Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Mojo61 on August 23, 2016, 05:36:15 AM
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I've just seen a report on BBC breakfast regarding new research which shows that women taking HRT run triple the risk of developing breast cancer, and that previous statistics were greatly underestimated! Anyone know anything about this?
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Edit by Emma
This is on our news page
http://www.menopausematters.co.uk/newsitem.php?recordID=173/Effect-of-combined-HRT-on-breast-cancer-risk-likely-to-have-been-underestimated-new-study-finds
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I have just seen this too ...
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I'm not sure if links are permitted on the forum so please remove if this is the case. This from The Telegraph:
http://www.telegraph.co.uk/science/2016/08/22/hrt-triples-the-risk-of-breast-cancer-longest-ever-study-shows/
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My vaginal atrophy was so bad that I require local and full HRT , and quite frankly I don't think I would be here if HRT is taken from me because of reports like this.
Three times the risk , you still need to realise the amount in percentages though.
I no three ladies with BC , one extremely aggressive NONE of them have ever been on HRT.
I have considered a hyster to get rid of the progesterone part, but that comes along with potential problems later also with a vaginal vault prolapse.
We are damned if we do and damned if we don't. 😔
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Just seen this too. Yet another worry for combined continuous hrt use. Is there anything out there about risks with sequential regime does anyone know?
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It's why some of us are only on a 100mg of utrogestin 7 days a month to lessen the BC risk . I believe it's the progesterone that is the issue with HRT ?
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Thanks for posting the link, Mojo61 - I felt very dismayed when I heard this on the news a short time ago as I am off to the GP this morning to see about being prescribed HRT. The symptoms have had a huge impact on my life & I cannot face feeling like this for possibly years on end. Is it better, I wonder, not to have combined tablets but to have separate oestrogen and progesterone so that the progesterone element can be tweaked? I had read good reports about Femoston but now I am not sure what to do. :-\
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Just when I had settled on combination of Everol 25 and daily 100mg of Utrogestan after 15 years on cyclic HRT, this comes up. Need to think logically, I have enough health worries this year.
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As always we don't know the full details of this study which has not yet been published. A press release (with probably more information than reported in the press) will have been sent to the press – but the abstract of the paper will give us more details.
The Guardian gives a little more information:
https://www.theguardian.com/society/2016/aug/23/combined-hrt-increases-breast-cancer-risk-nearly-300
The details of the study are not clear at this point.
When they talk about combined oestrogen and progestogen – do they mean continuous combined only or all forms of HRT in which a progestogen is used?
Also how do these results vary according to where the woman is in menopause and her age? This is absolutely crucial.
We need to know what sort of “pills†were used for this study – is this across the board ie all types? What about transdermal HRT? How do the results vary for different progestogens and progesterone? I doubt there are sufficient data to assess the latter). Without this information the results are meaningless – since other studies have shown no increase in breast cancer for those using progesterone vs some of the synthetic progestogens (don't have the studies to hand), and that progesterone (Utrogestan) is thought to be "breast friendly".
Crucially – this is a study of association and correlation – as far as I can gather what is known as a “longitudinal study†where women are followed over time. This is very different from a placebo controlled trial which sets out to look at cause and effect - in which some women are treated and others not.
For example one could argue that certain other factors (background, lifestyle – alcohol, weight, smoking etc) could make some women's menopausal symptoms worse and drive them to seek help from their doctor for HRT, and it could be these factors which account for the differences in risk observed in the study and might lead to greater breast cancer. I'm not saying this is the case but you can't conclude causality from non-experimental data.
I expect the British Menopause Society will release a statement in response to this and it will appear on this website in “Newsâ€. I see that Dr Currie has already made a statement (in the press) and mentions lifestyle factors, and there is a link to another study and Guardian article ( haven't read this – too early, going out!) https://www.theguardian.com/society/2014/jan/08/higher-breast-cancer-white-women-alcohol-breastfeeding-birth-rate.
The 7 day progesterone treatment is not to prevent breast cancer but for progesterone intolerant women. There has to be a balance between preventing endometrial and breast cancer. If utrogestan is breast friendly then no need maybe for the 7 days anyway?
Mojo61 - it is absolutely OK to post links in fact we are encouraged to do so to substantiate any claims made. We can link to anything except websites where you buy something including some of the many (mainly US based) menopause doctors who also sell vitamins and creams. the rule is designed to stop people from companies coming on here promoting their menopausal products really.
Hurdity x
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Thanks Hurdity 😊 a great response as always .
Just feels like GPs want any excuse to not give HRT and His sort of thing fuels there fire.😡
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I saw the report on the breakfast news. I won't comment as I don't use HRT myself but I did think the info given out was rather sketchy but could worry a lot of HRT ladies. It did not explain much but just ended with 'see your GP if you are worried'. The surgery phones might be red hot this morning.
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Thanks Hurdity, as ever logical and informative. I must admit with the million woman survey results I felt they did not take into account the variables you have mentioned in your post. Interested to hear that Utrogestan is 'breast friendly'. Flutterby x
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Quality of Life, Girls, Quality of Life ::). I had breast disease 10 years after a 3 month course of HRT which I stopped as it didn't work. Any connection, maybe? but it didn't bother me then and hasn't since.
That bus might be along way B4 any cancer cells get out and about ;-).
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Another one with severe VA that needs topical and systemic HRT to be able to live a life where I can sleep, walk, sit down etc.
I shall continue taking it all.
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I don't like their scaremongering, CLKd is right about the bus. A relative of ours has a life changing hereditary disease in the family and does not yet know if they have been affected but will have tests at a later date. Other realtives in the same bloodline have had tests and are clear. there is nothing to say that they won't contract some other equally devastating illness in the course of their life, or die prematurely in an accident before one of them who does inherit the disease. Life is so random and CLKD is also correct in her 'quality of life' philosophy. I agree and my decision not to use HRT was never based on the scare stories about breast cancer.
A cousin used HRT and got BC; a friend got BC and didn't use it. It is not set in stone.
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Excellent post as always Hurdity, thank you.
These reports do make you worry a little but there are so many variables regarding dose, route, length of time etc etc and , until I see all the evidence I shall continue to use hrt.
In a few years there may well be yet another report saying it's safe, so many confusing studies.
I see my hrt as giving nature a helping hand, alongside healthy eating and exercise. If I were to come off my patch I would probably need anti anxiety meds , strong painkillers for my aching bones and pills for IBS. Those would put a strain on my liver and may well cause other problems down the line!
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I think what matters is that a woman can make an informed decision about what risks she is prepared to take - it's always going to be a trade off between relief of current symptoms and long term risk/ benefit. Only the individual can decide whether symptoms are so unbearable that quality of life matters more than longevity. The problem of course is for doctors who have a duty of care to try and prevent harm to patients and have to take into account all risk factors when prescribing. Also , it's easy when caught up in the turmoil that is the menopausal transition to think that all that matters is the here and now and being symptom free- one may feel differently if one was unlucky and did develop hormone therapy related breast cancer down the line.
Although my aunt had breast cancer , my GP didn't rule out HRT use but explained the possibility of increased risk etc and i decided it wasn't for me at this stage.
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It is an increase in risk, not a cause.
They said that the risk returns to normal after 2 years of stopping, which makes it less likely to be a cause.
My in-laws both lived pretty teetotal lives with plenty outdoors, healthy food and followed health advice, had all the tests and check ups and had parents who lived to a grand old age. They died at 71 and 73 of cancer. My mother died of gallstones at 70 after years trying to keep her blood pressure/cholesterol down so as not to die 'early' at 78 like her father.
If I get past 70, then I am on to a winner. Until then, quality of life. I am not compromising for a tomorrow that may never come.
Fresh air, exercise, good food (and in my case HRT) help me to enjoy the life I have :)
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Two glasses of wine per day are apparently similar risk, breast cancer can be present 6 years before a tiny lump is noticed, so in many cases was most likely there and then exacerbated by the HRT or maybe not? Weight lifestyle and genetics will also play a part. Some people smoke heavily all their lives and dont get lung cancer. Also the equine based HRT which was most commonly used in USA to me might be more disruptive to the body than the Bio Identical . The numbers always look impressive until an expert comes along and puts them into persepctive
:-*
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I've read this study and it seems rather full of holes. The main one being that it talks of RELATIVE risk rather than absolute risk. If someone is better at statistics they may be able to calculate this for me as I am rubbish at stats.
I was also surprised that there was quite a few older women in the study.
The study also spoke of its limitations which should also have been taken more into account
They also seemed to have a high use of oral hormones rather than transdermal etc. The study was based on self-reporting by use of questionnaires so they could also have encountered bias there - if someone's drinking a couple of bottles of wine a night they are quite unlikely to state that on a questionnaire for example.
But I think the most important thing is that we have to remember that this is relative not absolute risk.
Here's a link to the study if anyone would like to see it
http://www.nature.com/bjc/journal/vaop/ncurrent/full/bjc2016231a.html
Personally I feel it is a case of the usual problem of journalists getting hold of a study and not having a clue what to do with what it really says.
Hope that helps!
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This is on our news page
http://www.menopausematters.co.uk/newsitem.php?recordID=173/Effect-of-combined-HRT-on-breast-cancer-risk-likely-to-have-been-underestimated-new-study-finds
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Interesting. Having read the info on MM News it will not in any way change how I feel about taking HRT. I will continue to use it for the foreseeable future.
It really does concern me though that there is so much conflicting evidence out there on these type of reports and it will of course make many women decide to stop taking HRT and without doubt increase the never ending bad press that HRT gets.
Like so many of you I know so many people who (even before this report came out) look at me in horror when I say I take HRT as if I am some kind of idiot but for me quality of life is more important.
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This study doesn't worry me in the least and it more or less confirms what most people know - it's the synthetic progesterone component of HRT that carries the breast cancer risk, NOT THE OESTROGEN. I usually take these studies with a very large pinch of salt because they so often conflict and no doubt another study will come along soon which contradicts this one and they are always full of holes.
However, I do think there might be something in the theory that synthetic progesterone raises the risk slightly because it comes up time and time again. Purely from my own personal point of view, I am dubious about any drug that causes breast pain. My body decided to completely reject all forms of synthetic progesterone post menopause, perhaps it is an in-built defence mechanism.
It really is time to find an alternative to this outdated stuff not only because of possible breast cancer risk but also because of the endless, horrendous side effects - it really is nasty stuff. The whole thing needs a radical overhaul with new guidelines (like the UK licencing Utrogestan to be used vaginally and actively encouraging women to use it in that way) and doses for the progesterone part of HRT need to be reviewed. I think there are too many women taking too much progesterone in order to cover worst case scenario and this is not only damaging women's quality of life but also (slightly) raising breast cancer risk.
For women who are just about to embark on HRT, I would suggest looking at a cyclical regime with Oestrogel and Utrogestan (micronised progesterone) because it carries fewer risks. I think it is important to try and use progesterone vaginally because (a) it works better at lining clearance and (b) it has fewer side effects - like breast pain for example.
For those who are happy with their continuous combined regime, I would say continue with it because the risk is very small.
Things need to change.
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Excellent post Mary. As a scientist this study doesn't worry me at all but the reports in the media do; yet again women are left confused and many will probably abandon the one thing that gives them relief and helps them cope. My answer is oestrogen patch + Mirena and maybe this is something that should be considered more. My GP calls it "the GPs perfect HRT regime". There's long cycle, there's Utrogestan and other things that can be considered but sadly the consensus seems to be to reach for the pills as a one-size-fits-all solution. Biological systems just don't work that way!
I'll keep fighting to keep my Evorel until I'm dead or reach 100. Whichever comes first.
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This news wouldn't persuade me one way or other but sadly I'm afraid it will make gps even more resolute in not prescribing hrt,its just another reason they've been looking for as some of us here can vouch for :-\
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I had to come off the pill at 49 and was put on progesterone only (cerazette) which seems the way things are going.
As a result, I had breasts like melons, that were certainly as hard as melons, and sore, sore nipples. So I tried a more usual POP after 6 weeks and they still did not go down, so threw in the towel after 12 weeks. They are supposed to be better for breast cancer than COC but also, the small print says there is not as much research ::) I am sure there will be scares in the future about all the long lasting progesterone stuff they encourage these days.
I too think that it will make GPs who are not keen on prescribing HRT more resolute.
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So, are there not risks in taking contraceptive tablets then, both have progesterone in them.
My friend has taken the POP for years but doesn't agree with HRT, even though she had premature menopause in her mid forties. Yet she happily indulges in a fair bit of wine and is overweight...both of which increases breast cancer risk.
I personally know three people who have had BC and the two who died were both under 40, so no HRT involvement there.
My worry is, as someone else said, that doctors will question prescribing it again.
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Or they will hide behind the lowest dose for the shortest time, ie 5 years only.
I'm not sure that these studies are helpful to the individual. It is an increase in risk to a population group. You do not have any idea of what the increase of 3 times is. You do not know if it is an increase in 3 times of never getting breast cancer or 3 times the increase of a certainty, or one of the many places in between. You either get a disease, or you don't (except for uncertain diagnosis) and not a percentage of one.
Also, you have to take into account the other things that you might be more likely to get or not likely to get and might die of.
It is exhausting :o Sometimes you have to just hold your nose and jump.......or not.
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There is no answer, at least not as long as GPs are dumbed down by the government, have far too many patients and not enough time, and have NICE telling them what their every move must be and enforcing a "treat by cost and algorithm rather than treat people as individuals" culture. No wonder nobody wants to do general practice any more.
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There is no answer, at least not as long as GPs are dumbed down by the government, have far too many patients and not enough time, and have NICE telling them what their every move must be and enforcing a "treat by cost and algorithm rather than treat people as individuals" culture. No wonder nobody wants to do general practice any more.
for me, that is the crux of the debate, not the relative risk factor of any given treatment. It may well be that HRT really isn't that safe ( I'm not a scientist, I haven't read enough etc so I don't know) but what it does do is ameliorate the rubbish symptoms that an overstretched GP surgery either ignores or pushes you onto various psychiatric drug cocktails. If further research shows that the risk of extended use of HRT is dangerous with the risks outweighing the benefits to all but a small number of women ( I'm thinking those facing a very early menopause) then something else is going to have to be put in place to support the large numbers of women who don't find the transition a breeze, emotionally or physically. Personally I've had so many trips to the doctors since this started and not once have any of the HCPs I've seen offered anything other than anti-:depressants or the possibility that HRT might be the way forward at some far off point that we never seem to get to. I'm not suggesting that a listening ear and support would be as good as HRT for all, but it would be a start and surely it's better to have those sort of health care systems in place for the eventualities that new medical research might throw up about any manner of drug treatments.
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Just to reiterate, it is the progesterone part of HRT that carries all the risks and has the nasty side effects, not the oestrogen part. It is the oestrogen part of HRT that relieves symptoms, protects your long term health and makes you feel good.
Some experts believe that oestrogen only HRT can REDUCE breast cancer risk.
The answer is to find an alternative to synthetic/micronised progesterone.
In the meantime, I think the progesterone component of HRT should be kept to a minimum if possible and oral use should be avoided.
Perhaps the progesterone dose in the Mirena coil could be reduced for HRT use which might make it more suitable for more women. At present, too much of the progesterone gets into the overall system causing side effects like low mood and breast pain.
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Perhaps, the fact that there is a little bio identical progesterone in the OTC creams, and they have not been brought up as having any risk, the Utrogestan would be outside of this study's risks.
I guess we just have to wait for the full report to know more.
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Hmmm. Interesting.
For me personally, the question has got to boil down to - how would the risks of foregoing progesterone altogether (possible endometrial cancer) stack up against/compare with the increased risk of contracting breast cancer. ???
I'd guess more likely to contract endometrial cancer, (although I was told by a gynae doctor an arguably easier to treat cancer) - but of course that would have a cost implication of scanning ladies on a regular basis. ???
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It's interesting isn't it that there are lots of studies about the 'harmful'effects of HRT yet very little research on improving HRT preparations. In the utrogestan/oestrogel thread Hurdity has posted some links to some small scale studies looking at alternatives ways to give the progesterone element which do not involve continuous use and one consultant recommends use of progesterone 7 days a week per month - and yet the standard 'licensed' route is oral administration continuously or up to 23 days per month. Why are there no decent large scale trials of these alternative uses of progesterone or trials which look for the smallest amount possible while maintaining a healthy endometrium for those us still with wombs? The reason probably is that drug companies don't want to fund them (because might lead to lower prescribing) and such studies might not be 'sexy' enough for other funders to fund them - no major disease breakthroughs etc - simply improved quality of life for an awful lot of women - no one is going to win a Nobel prize for that. I feel really angry today....
Apparently Women's Hour are going to feature this later this week - I'm at work so won't be able to listen live but it would be good if lots of people who have struggled try and get in touch to make sure the voice from this perspective is heard.
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I have to say I was very upset to hear this current bit of news - why can't they pick on other drugs that give bad side effects and risks. Wouldn't we all like an alternative way to relieve our meno symptoms???
To me, it highlights the risks of progesterone, which many of us have problems with anyway. Surely this opens up the possibilities for a drug company to come up with an alternative way of keeping your womb lining thin - a real money spinner. Why can't they produce a ring (like the Estring) that can be inserted for a few days each month, gives less pregesterone in the first place and possibly giving micronised progesterone directly to that area - this would surely reduce the risk factor? Unfortunately many of us can't use Utro vaginally as the coating causes irritation in the vaginal area - a silicone ring would be ideal
This study was carried out by the Institute of Cancer Research so was of course looking for the cancer risk specifically.
Like Hurdity, I would like to know what the study actually looked at : were life style choices taken into account (e.g. diet and exercise), alcohol intake, what actual types of HRT were used etc. - was Utrogestan part of this study?
I was once employed to help facilitate a medical conference 3 years in a row that was looking at Blood pressure drugs and treatment. Each year there were presentations given by eminent doctors and scientists showing their findings from studies regarding various drugs and treatments - all varied and clearly geared to promoting the use of blood pressure drugs.
At the end of each conference was a rounding up discussion - unfortunately most of those attending had gone home, however, for me this discussion was the most interesting, as they were talking about the prevention of high blood pressure in the first place. Blood pressure drugs can give some nasty side effects - my mother takes them and feels awful for a couple of hours each day after taking them. These conferences left me very sceptical about studies in general.
I believe there are now worries over statins which are routinely dished out and give many people very nasty side effects - there is also doubt whether they are truly beneficial. Why aren't they doing more research into this???
Why oh why do they never emphasise the benefits of HRT - there is a balance to be considered. All drugs have benefits and side effects and this scary stuff will give more fuel to GPs to refuse women treatment and simply ‘kosh' them women with ADs/SRRIs which can also have some nasty side effects.
One of the biggest risk factors for all cancers, especially breast cancer, is being overweight. ADs/ SRRIs are notorious for making people put on weight - I'm sure if they did a study to look at breast cancer risks for women on ADs/SRRIs they might come up with a similar BC risk factor. DGx
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What it comes down to in the end is if the research was not done, and then published, women would be none the wiser.
However, everyone has the right to the full facts, so they can decide what is best for them.
Can you imagine the outcry if we were kept in the dark or the statistics not checked.
The more information the better, in my view.
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So, are there not risks in taking contraceptive tablets then, both have progesterone in them.
Yes, it's all hormones - my previous GP used to make muttering noises about me being on it too long because of the risks of BC, my current one is happy for me to stay on it until I'm 50 - I just hope this research won't make her change her mind. :(
I'd like to know if the increased risk applies to younger women though... bearing in mind I'm going to be taking some form of hormones for at least the next 9 years...
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From the press "39,000 women were monitored for six years. During that time 775 – or nearly 2% – developed breast cancer and women using combined HRT (for an average, median duration of 5.4 years) were 2.7 times more likely to contract the disease during the treatment period than women who had never used HRT."
So 2% got it and the women who had HRT were 2.7 times more likely to get it. The 2% included woman on and not on HRT. That's 2.7 times a tiny existing risk. Quite frankly, I'll take that to feel normal and I'm only 43 so am going to continue to be on HRT for a considerable time.
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Hello :) I have been on HRT for about five months now and aside from the first two weeks on Elleste Duet (when I felt amazing!) seem to be getting no benefit whatsover now. I was switched to Femoston and for the first three months there were no benefits nor side effects. Am now three weeks into Femoston 2mg and if anything feel worse. Have hot flushes still, headaches, either can't sleep or am overwhelmingly fatigued, ache all over, have breast pain and tenderness like never before and my nipples are often painfully inverting and need to be tweaked out, have zero libido (it made a welcome return during the first two weeks of Elleste Duet but not since) and am more anxious than ever. Whilst I was happy to ride all this a bit longer on the GP's 'give it time' advice, this news item (though I haven't gone off alarming about it and have read all your very helpful comments above) has made me wonder if I am putting myself at increased risk for what seems like zero benefit. Am scared to go cold turkey though so what should I be asking for please? I am still having reasonably regular periods by the way. Would really appreciate your wisdom and experience. Thank you.
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Here we go again.... All designed to make women feel bad about using something that makes them feel good. Yet again more women and doctors will be scared away from hrt based on a media story.
No doubt this report will make a lot more noise and get a lot more attention than NICE because that's the way things go with hrt. Everyone loves to hate it because how dare women expect to have something to make their lives easier.
Frankly I don't care what the "research" says. Without hrt the insomnia would make me top myself anyway.
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I am a Chartered Scientist (amongst other qualifications) and I have reviewed the report and it is deeply flawed.
As others have said, it has heavily relied on self report questionnaires.
These are notoriously unreliable and often invalid as people frequently over or under report their symptoms or living habits. As the old joke says, the definition of alcoholic is someone who drinks more than their GP. And as GP friend of mine says he tends to mentally double the units of alcohol some says they consume weekly!
Also it has relied heavily on oral, not transdermal, HRT and too many other variables or factors haven't been considered.
As others have said, it's combined HRT with progesterone being the health issue and it is appalling that there's both insufficient research and treatment options available for women.
I think the current NHS advice for 200mg of Utrogestan for 12 days a month is both clinically outdated and appalling- clinically often unnecessary, resulting in many women feeling so awful they just give up on HRT and suffer even more.
GP's often are intellectually and clinically challenged when it comes to thinking about HRT, and I do think HRT prescriptions are too frequently given without thought as to the right HRT: the right dose, the right format and the right frequency.
The NHS "one size fits all" attitude just doesn't work.
Nor does the often prescribed anti-depressants as an "alternative" to HRT work for women whose psychological problems are hormonal in origin. Albeit it's a cheaper option for the NHS
Basically it's a flawed study. Unfortunately there is minimal interest by drug companies or the NHS
to address HRT issues per se, to conduct more reliable and valid research, as both are primarily financially driven.
It's all about reading the facts, not sensationalist news reports and deciding how you want to spend the last third of your life and your quality of life.
Keep calm and carry on!
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Good post Freckles :clapping: DG x
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DeDiva Ann
I am not a fan of oral HRT (I was on Femoston 1/10 and it did nothing at all for me, although I accept some women finds it suits them) and think the clear clinical evidence for transdermal (gels or patches) HRT indicate they are safer and more effective.
Don't panic- spend some time to read the many posts on the forum. It may be the case the Estrogel and Utrogestan regime would suit you better. It has been very effective for many women on here compared to oral (tablet) forms of HRT.
Don't go "cold turkey" until you have some more informed information about HRT and can consider your options to ask from your GP.
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And here we go again.
Yet another scare story. I hope they do a proper study, one where they can pinpoint which types of HRT is safe and which methods carry more risk,
rather than put a blanket ban (it's too dangerous) on all HRT again, which is usually the case with these things.
Are we facing a situation where it will be a battle once more to get GPs to prescribe HRT for women?
Just when we were getting somewhere. :'(
I don't think my quality of life will be up to much if they refuse me HRT.
I don't think I'm on my own.
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It's been reassuring to read all the different posts. I get very frustrated about the lack of research that has gone into just what the effective amounts of progesterone might be deemed sufficient to clear the lining build up, rather than a one size fits all.
If you look at the various hrt preparations available under the relevant headings on this site, there's some inconsistency in the amount of progesterone to take eg a 1mg oestrogen dose requires 1mg of Norethisterone, and the higher medium dose of 2 mg of oestrogen also requires 1mg of this progesterone. Both are for 12 days. Yet when you look at the (limited) patches available, the progesterone part has to be taken for 14 days - I reckon the reason 14 days is stated is purely because it ties in with patch changeover days and maybe fewer days would suffice.
Mrs frustrated cheesed off about it all!!
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Thanks very much Freckles :) Very helpful and I will do some more research. My next HRT review is not until end of October but might see if I can bring it forward. Have been wondering for a while if the oral route is not for me and this post has precipitated that thinking.
Your informed wisdom above has also been very helpful reading.
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Dang! I have an appointment with my GP tomorrow for a 6-month script renewal. I'm in NZ...every time I go, I get the disapproving look and the suggestion that I quit. Not a gun-rights nut, but I repeat the NRA bumper sticker to myself with a substitution: "I'll give you my HRT when you pry it from my cold dead hands". We don't have the same drugs...here, I'm taking, daily two pills: (1) Progynova (estradiol valerate) 1 mg and (2) Provera (medroxyprogesterone acetate) 2.5 mg. I would welcome any insights people have into this regimen re the latest study...or any observations really. This is funded here, and I imagine if I wanted to branch out and try something else, I'd have to pay the full cost. But I can't say I have much understanding of the different combinations etc. Meanwhile, I'll be looking out for more detailed reviews of the study. I feel like HRT saved my life...
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Unfortunately, I think those of us who wish to continue, because the benefits outweigh the risks, will have to go private and get prescriptions off gynecologists, who seem much more clued about HRT than your ordinary GP, who are prone to falling hook line and sinker for scare stories.
Lets all stop eating eggs while we're at it, after all, they're extremely dangerous. There was a study and all, it's been in the newspapers, It must be true!
Oh wait , that was a load of bull**** ::)
Just like this is, I suspect.
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I'm joking on the outside, but inside I feel like crying at this latest news.
Seriously.
Why is society so anti-HRT? Are they anti -older women? (because it feels that way)
I'm fed up with constantly having to fight for something that improves my quality of life.
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You are welcome DeDiva Ann. I found the whole issue of HRT is really confusing at first, but once you read some informed posts, things do become clearer. Personally I'm not a fan of oral (tablet) HRT and transdermal (gels or patches) are consistently shown in clinical research papers as being a far safer and more effective treatment option. Why GP still prescribe HRT oestrogen tablets is beyond me, other than they are a bit (but not much) cheaper than Oestrogel and often a lazy option to prescribe.
I was so frustrated with Femoston doing nothing for me, I ended up seeing Professor John Studd privately, as my GP just wanted to give me antidepressants instead. Even if you don't see him, his web site has some really useful articles and information on HRT you can read. Quick Google will show his web site.
Do read up on the posts though and any links - knowledge is power!
Good luck and keep us updated?
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First class post Freckles, brilliant!
I've just watched BBC News at Ten and they made it quite clear, the risks of using oestrogen only HRT are the same as for women who do not take HRT.
They know where the risks lie so they now need to deal with them and change the progesterone doses and delivery method.
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Hi ladies, don't often post these days but felt I wanted to post on this topic as I know it's such a important one.
I was diagnosed with bc 2014 by routine mambo, I was on hrt for 13yrs -7 of these on estrogen only as had hyster. I will always wonder if hrt played a part but it was the right thing for me all those years as I had horrendous symptoms. It is easy for people to judge against hrt but for some it is a life line. If anything estrogen probably makes cells develop more rapidly but not actually cause it.
Thankfully mine was caught early but I do still struggle with memo symptoms and have had to give up work. I would say it's a decision made according to ones symptoms and their quality of life and remember it is not JUST women on hrt who get breast cancer...I miss it😘
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Thank you DG and Mary G! Much appreciated.
They *should* improve treatment options regarding progesterone but they (both pharma companies and the NHS) won't as:
a) they don't care;
b) it will cost money;
c) women with HRT aren't a particularly lucrative group for drug research and we don't overtly cause future problems for the NHS re costs for health problems (but of course we potentially do, re heart, osteoporosis, psychological problems, etc., if incorrectly treated)
d) they don't care- oh, already mentioned that ....
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Hi Petra,
The HRT drugs mentioned on here are fully available in NZ- it's just the trade names that vary.
As you will gather, I am a huge fan of the Oestrogel and Utrogestan regime, rather than oral (tablet) HRT. I found it life changing compared to the oral HRT I was on.
I have briefly lived in NZ and can't quite remember how the health system works although I remember it was a mixture of public and private health care .
Private prescriptions for the Oestrogel and Utrogestan regime vary here in the UK according to the pharmacy but I paid £70 for three months supply, including a small amount of Testim (testosterone) gel after I first saw Prof. Studd. Have a look online for NZ to see what the charges are?
I'd suggest reading as many posts as you can on the forum so at least you can make an informed decision about treatment options.
And as many on here will testify, don't be fobbed off by a GP who is intellectually, clinically or often emotionally, challenged about HRT and the best treatment regime to offer.
It's your body, your life and your choices about the quality of life you want.
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Thanks Freckles. I've often wished I could see Prof Studd but sadly can't afford it. My GP does her best within the constraints of the NHS and I'm really hoping she'll be happy to switch me to gel or patch. I think she's also going through the menopause as been very interested when I've shown her posts from here before. I did ask my (male) GP if testerorone was available for women on the NHS as I am desperate to get my libido back (very long story but as a full time carer to Mum from 5 -46 my sex life didn't really begin until three years ago and I feel hard done by!) and he said "some old fashioned gynaecologists might still prescribe it but it was far too risky and caused a) b) c) etc." I can't bear the thought of being condemned to a life without desire. Will report back. Thanks so much for yours and everybody's input, experience and advice.
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Dang! I have an appointment with my GP tomorrow for a 6-month script renewal. I'm in NZ...every time I go, I get the disapproving look and the suggestion that I quit. Not a gun-rights nut, but I repeat the NRA bumper sticker to myself with a substitution: "I'll give you my HRT when you pry it from my cold dead hands". We don't have the same drugs...here, I'm taking, daily two pills: (1) Progynova (estradiol valerate) 1 mg and (2) Provera (medroxyprogesterone acetate) 2.5 mg. I would welcome any insights people have into this regimen re the latest study...or any observations really. This is funded here, and I imagine if I wanted to branch out and try something else, I'd have to pay the full cost. But I can't say I have much understanding of the different combinations etc. Meanwhile, I'll be looking out for more detailed reviews of the study. I feel like HRT saved my life...
Hi Petra
I'm in Australia, so we probably have similar HRTs. You might find the Australasian Menopause Society website helpful as the information is more relevant to us in regards to the different types available. They specifically show the types available in NZ.
http://www.menopause.org.au/for-women/information-sheets/426-ams-guide-to-equivalent-hrt-doses
I agree with Sunnydays that there is no real consistency with the amount of progestogens needed for a particular dose of estrogen. However, it depends very much on the individual woman, so it is very difficult to have a set dosage rule. It really comes down to trial and error, and this is one of the reasons why I prefer Provera to Utrogestan which is very inflexible with doses.
I use a 50mcg patch which is a medium dose, and I take a 5mg Provera tablet for 12 days every two months. That works really well at keeping the lining at bay. Sometimes I even wonder if I took 2.5mg for 12 days if that would be enough as well. I also toy with the idea of trying a continuous method, where I would take 2.5mg Provera every day, but I'm nervous about how taking it every day will effect me.
The other option I may try next year is to take 5mg x 21 days a month, giving myself a break for the rest of the month, to see what effect that has. It might be enough to keep the lining thin enough so I don't get a period, or it may make no difference at all.
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While this study reported today is good for an observational study, it is still an observational study and hence has biases. The overall information does not tell us anything new and nothing that was not included in the NICE guideline.
Some important points to consider:
1. The associated risk returned back to baseline within 1 to 2 years after stopping HRT, confirming the view that HRT does not CAUSE breast cancer, but that it may promote the growth of cancer cells which are already present in some women--it can act as a promoter, not an initiator. This is a really important message since many women fear that HRT causes breast cancer.
2. The NICE guideline did in fact take into account the fact that previous observational studies may have underestimated the risk so NICE recommendations are still very relevant.
3. There is evidence that different progestogens may be associated with a different risk, types increasingly used today were not the main types used in this study.
4. While trebling of risk sounds very alarming, the actual figures are still very small and for many women, the benefits will continue to outweigh the risks.
5. Statement from British Menopause Society and Royal College of Obstetricians and Gynaecologists will be placed in our news section later today.*
I hope this is helpful.
In summary, no major changes in advice or recommendations.
Best wishes
Heather
--
*update: the statement is on the news page here:
http://www.menopausematters.co.uk/newsitem.php?recordID=174/RCOG-BMS-response-to-Breast-Cancer-Now-Generations-Study-on-HRT-use-and-breast-cancer-risk
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Hello again DeDiva Ann
If you GP is interested, do go to John Studd's website as his clinical research articles and his more "reader friendly" for the lay person are on there and you can print them off to give to your GP.
Do read them re gels versus oral HRt and testorterone
Your male GP is taking rubbish re testosterone!!
All women need testosterone and in fact young women in their 20s naturally have more than most young men.
The Testim (testosterone) patches were taken off the UK market for commercial reasons, not clinical ones.
I am prescribed a daily very tiny bead of Testim by my GP via Prof. Studd on the NHS. So it is prescribed and it's not "old fashioned". It helps not just with libido, but also depression and loss of energy and works with oestrogen to improve mood. It's not "risky" (there's not any evidence clinically for that all, at a very low dose that I and others here on MM are on)
There was a recent article in the Sunday Times "Style" magazine by a woman in her early 50s who had lost her libido and went to see Studd and is now all singing and dancing in that area due to Testim!
Studd currently costs £300 to see him initially and I got my hormone blood tests done on the NHS to save costs at his clinic.
I couldn't afford it either but as my GP is a mentally challenged 12 year old and wanted to put me on anti-depressants, which I didn't want, I had no option.
I am so, so pleased I did, as his regime I have found to be life changing and worth every penny.
He wrote to my GP and I get it prescribed all on the NHS
If your GP isn't helpful, beg, borrow from family/friends or use your credit card to see him.
Life is too tough and too short to feel so crap for the last third of your life.
Good luck- do some reading and research and let us know how you get on?
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Thanks @Dana and @Freckles. Obviously I need to do a lot more reading around what to do re the Provera/progesterone side of things. I will check out the Oz site for sure. Thanks for the really useful feedback to my post.
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That is all incredibly encouraging Freckles. Thank you soooo much. Am going to speak to my GP and if not my credit card may just have to come out. I had pretty much written myself off but am daring to have a little hope now :D
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Petra and DedivaAnn
Do search and also check out posts on here and read other internet forums.
Knowledge is power- and at least you can make an informed decision on what treatment options are offered to you, what is more effective and safer, what may be better than you are currently receiving as meds, etc.
I was pretty clueless back in March this year and this forum and the helpful posts from some posters was incredibly helpful.
I had spent a few hours researching treatment options in the UK for HRT and as my GP was so unhelpful, eventually decided to see Professor Studd as he seemed the best option due to his considerable clinical experience. Ironically I found that tough to do, as I was so low in mood I struggled to be motivated to do anything, despite being on oral HRT at the time!
As I said, I couldn't really afford it but figured that it if helped me feeling so awful, it would be worth it.
It was and it has been. Best £300 I have ever spent.
Sounds bit dramatic I know, but his treatment regime has changed my life. It's only looking back I realise how rubbish I felt, getting worse slowly over a period of a few years.
I am a devotee of the gel treatments for daily Oestrogel, Testim, and the short term treatment for Utrogestan (progesterone) especially. It's safer, more effective and does help re future problems such as heart problems, osteoporosis
I do realise some other women get on fine with oral (tablet) forms of HRT.I didn't at all.
I just don't agree with the "one size fits all" approach of the NHS, whether from GP's or NHS Menopause Clinics, as evidenced by bad experiences from so many posters on MM.
I think they often do more harm than good, prescribing inappropriate treatment that make many women feel so awful that they then give up and then suffer for years.
That shouldn't be the case.
Sorry, on a roll here!
I don't think any GP (or other medical doctor) is omnipotent.
It's about taking control of your life and your hormonal symptoms by getting appropriate diagnosis and treatment.
If you feel you have crap service from your GP, then reading up on all the information, then thinking about getting more informed advice and treatment from an appropriate specialist would be sensible?
Life is truly too short, too uncertain and certainly not worth the last third of it spending it as an extra in a B rated version of the "Twilight Zone" feeling an anxious, depressed, sexually numb zombie as I was feeling, with inadequate health care.
Sorry for the long post and rant but I feel so strongly about women's hormonal issues being generally mistreated, diminished, and/or disregarded.
Good luck and let us all know how you get on? xx
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So good to read the comments on here as when the news came out I went "oh no!" The thing that struck me is how few alternatives are offered for severe menopausal symptoms ... for e.g. I've found acupuncture helpful but I've yet to see it publicly funded! Until more alternatives are offered, then unless a woman finds other things that work to reduce the symptoms to a manageable level (and can afford them - which is a whole other social justice issue), HRT is, in the interim, the most helpful and effective thing. As someone else said, it's quality of life that matters too. I couldn't function properly before I was put on it and while things have been a bit rocky the last 6 months (I actually had a breast lump in May this year - fortunately non-malignant), I've not regretted going on it. I found it very hard to function with clinical depression and as a single person responsible for supporting myself, HRT enables me to function and live life. At some point we're all going to die ... it's just the manner in which we will go that varies. Personally I would rather have my mental health intact over the possibility of some physical ailment that may kill me in the future.
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As Freckles says , if necessary use a credit card to see Studd or whoever privately we shouldn't have to but ??
I saw Dr Annie Evans who has now retired , and will now be seeing Nick Panay in November all on Credit card.
Feels like I have done my " bit" raised three children, all pay there taxes etc and I have been sent to the back of the cave and ignored by the medical profession.
If I was overweight , with diabetes etc there would be far more help.
Need to put in my next three month scrip of HRT next week , see if it gets a response . I have three months extra that I bought privately , in case there was ever an issue and I would be left without anything .
Thank you Dr Currie and all the other informed posts , to help those ( me ) who felt like rolling over and giving up what I saw this on the news yesterday.
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This news worried me yesterday, I must admit. Currently on Oestrogel and Utrogestan days 15-26 per month which I take orally. Would it be worth trying the Utrogestan vaginally instead? Would this lead to a lesser risk, I wonder? Frankly, I've considered giving up on HRT many times because of the Progesterone phase....... makes me feel sedated and miserable when I'm taking it. Just a bit concerned as I do suffer with thrush, so using it vaginally could set that off.........
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While this study reported today is good for an observational study, it is still an observational study and hence has biases. The overall information does not tell us anything new and nothing that was not included in the NICE guideline.
Some important points to consider:
1. The associated risk returned back to baseline within 1 to 2 years after stopping HRT, confirming the view that HRT does not CAUSE breast cancer, but that it may promote the growth of cancer cells which are already present in some women--it can act as a promoter, not an initiator. This is a really important message since many women fear that HRT causes breast cancer.
2. The NICE guideline did in fact take into account the fact that previous observational studies may have underestimated the risk so NICE recommendations are still very relevant.
3. There is evidence that different progestogens may be associated with a different risk, types increasingly used today were not the main types used in this study.
4. While trebling of risk sounds very alarming, the actual figures are still very small and for many women, the benefits will continue to outweigh the risks.
5. Statement from British Menopause Society and Royal College of Obstetricians and Gynaecologists will be placed in our news section later today.
I hope this is helpful.
In summary, no major changes in advice or recommendations.
Best wishes
Heather
Thanks so much Dr Currie for taking the time personally to let us know your comments on the recent study and confirming that Guidelines on HRT remain unchanged as a consequence.
Hurdity :)
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I've read this study and it seems rather full of holes. The main one being that it talks of RELATIVE risk rather than absolute risk. If someone is better at statistics they may be able to calculate this for me as I am rubbish at stats.
I was also surprised that there was quite a few older women in the study.
The study also spoke of its limitations which should also have been taken more into account
They also seemed to have a high use of oral hormones rather than transdermal etc. The study was based on self-reporting by use of questionnaires so they could also have encountered bias there - if someone's drinking a couple of bottles of wine a night they are quite unlikely to state that on a questionnaire for example.
But I think the most important thing is that we have to remember that this is relative not absolute risk.
Here's a link to the study if anyone would like to see it
http://www.nature.com/bjc/journal/vaop/ncurrent/full/bjc2016231a.html
Personally I feel it is a case of the usual problem of journalists getting hold of a study and not having a clue what to do with what it really says.
Hope that helps!
Thanks for posting this link. I was in a hurry yesterday and going out again today - thought I read that it wasn't published yet so didn't look for it, assuming the press info came from a press release in advance of the date being published!
Here also is the link to the BMS/RCOG response:
https://thebms.org.uk/2016/08/bmsrcog-response-breast-cancer-now-generations-study-hrt-use-breast-cancer-risk/
From what I recall from a quick glance at the study, the combined HRT mainly used by the women were the Premique types and Elleste/Klio types - all containing norethisterone, Provera etc and the synthetic progestogens. As Dr Currie says different HRT types are used increasingly today and the study says nothing about the risk associated with progesterone itself. Therefore it does not confirm that progesterone itself is dangerous (or increases risk of BC) - and as I think I mentioned in my post yesterday morning there are studies showing no risk of breast cancer associated with progesterone itself (note to self - find these studies at some point - but v busy atm - maybe someone else can do so?) - which has been described as "breast friendly".
Freckles you make some helpful comments, and so glad you have found an HRT to suit you, but you turn every discussion about HRT into a call for members to visit Prof Studd, and to promote the 7 day progesterone regime (not to mention travel costs). This isn't really relevant to the thread and I really hate to think of women feeling inadequate or that they have failed or causing themselves risk if they cannot afford this expensive consultation!!! it is not necessary (to see him to get that HRT)!!!!
I think we all need to get some perspective and carry on making the decision we need to make based on our circumstances, age and stage. Personally I would not use synthetic progestogens because I have been on HRT for more than 9 years and in my 60's, but someone in their 40's who wants to take HRT say for 5 years should not worry one jot. It is sensible if you have been taking it some time and over 60 perhaps to review what type you are using and weigh up the risks if any.
And of course if we need to - lose weight, stop smoking, reduce alcohol, take more exercise, eat a healthy diet - to minimise these risks to health/reduce risk of cancer, but continue with HRT if it enables us to function in today''s society! Off out now!!!
Hurdity x
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Thank You Dr Currie its exactly what I was hoping to hear.
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Thank you Dr Currie - so helpful to have a clear and balanced view on all this.
Thank you again Hurdity - all your info and thoughts are so helpful.
What a terrible shame that, yet again, women will continue to suffer - many women in meno have health anxiety anyway and this latest study is really not helpful. I also think the BBC together other news and media outlets have reported this irresponsibly - does no inspire us to trust anything else they report.
DG xxx
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Hey Freckles Really loved your last long post - not ranty at all! Thanks Maryjane too. I feel that 2016 has been a write off in every possible way for me and felt this was the shape of things to come. I too was reading everything on here back in March and keen to see Prof Studd back then but when I phoned was told first consultation was X, follow up was Y and tests were Z etc and it all amounted to around £2000 and was definitively financially prohibitive big money for me. I lost heart and every day since has been a muddled depressing write off with me feeling like I've aged 20 years in six months. I could defo muster up £300 though if the rest could be dealt with by NHS. Having reluctantly popped another Femoston 2mg I emailed lady GP this morning. Turns out she is on holiday. Am just waiting for another GP to call. She's new so this could be the best or worst thing. Will see how the call goes and then make contact with Prof Studd if there is no willingness to think outside the box. Thanks so much for your advice, moral support and inspiration via sharing your own story. So pleased things are far improved for you. Will let you know how I get on xxx
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Just spoken to the very rushed and unsympathetic new lady GP. She was INSISTENT that it is oestrogen that causes increased breast cancer risk and not progesterone. My understanding is that if we still have a womb we have to take progesterone to protect against endometrial cancer but that progesterone is not the reason for increased breast cancer risk. I need a medical link I can refer her to if I am right.
She said the only alternative for me if I couldn't tolerate oral HRT (which she seemed doubtful of) was a coil with progesterone. I said I felt the issue for me was synthetic progesterones and I wanted something more bio-identical. She said she had never heard of Utrogestan but I asked her to look it up. She then reluctantly conceded (felt like I had to bully her as she kept trying to get off the phone) to prescribe Oestrogel and Utrogestan but she has to clear this with another GP who is in charge of costs (the same GP who refused me Testem.) I then asked her about Testen and she said the more hormones I introduced to my body the more risks. I quote Freckles on the low risk versus significant benefit with Testem. She then conceded I could have a blood test for my Testosterone level.
I need to go and collect the blood test form and go to the hospital phlebotomists. Am not sure what else (if anything) she may have included. I wonder if I should be asking for other tests so that I could use this info to potentially take to Prof Studd?
I have been so dangerously depressed and anxious this year, I have a long history of not getting on with antidepressants and mood stabilisers (including in hospital, have ECT too.) Aside from the standard oral HRT options the only thing my (male) GP was prepared to offer me was occasional use of steroids to give me a boost (and because I sometimes seem to have an autoimmune response to sex.) Without this forum and especially this post I would have just shut up and put up and am starting to feel really angry that whilst feeling very unwell I have to fight and make a fuss about something that could really give me a chance of a better quality of life. >:(
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DeDiva Ann
I'd ask for your blood tests to include oestrogen, progesterone, testosterone and FSH (follicle stimulating hormone) levels and a T4 for your thyroid, to rule out an underactive thyroid, which can cause depression.
Check out Studd's web site for an article on what he calls "reproductive depression" and how this is often wrongly diagnosed and treated with AD's, rather than hormone treatment.
Your GP sounds a nightmare!
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I've read this study and it seems rather full of holes. The main one being that it talks of RELATIVE risk rather than absolute risk. If someone is better at statistics they may be able to calculate this for me as I am rubbish at stats.
I was also surprised that there was quite a few older women in the study.
The study also spoke of its limitations which should also have been taken more into account
They also seemed to have a high use of oral hormones rather than transdermal etc. The study was based on self-reporting by use of questionnaires so they could also have encountered bias there - if someone's drinking a couple of bottles of wine a night they are quite unlikely to state that on a questionnaire for example.
But I think the most important thing is that we have to remember that this is relative not absolute risk.
Here's a link to the study if anyone would like to see it
http://www.nature.com/bjc/journal/vaop/ncurrent/full/bjc2016231a.html
Personally I feel it is a case of the usual problem of journalists getting hold of a study and not having a clue what to do with what it really says.
Hope that helps!
Thanks for posting this link. I was in a hurry yesterday and going out again today - thought I read that it wasn't published yet so didn't look for it, assuming the press info came from a press release in advance of the date being published!
Here also is the link to the BMS/RCOG response:
https://thebms.org.uk/2016/08/bmsrcog-response-breast-cancer-now-generations-study-hrt-use-breast-cancer-risk/
From what I recall from a quick glance at the study, the combined HRT mainly used by the women were the Premique types and Elleste/Klio types - all containing norethisterone, Provera etc and the synthetic progestogens. As Dr Currie says different HRT types are used increasingly today and the study says nothing about the risk associated with progesterone itself. Therefore it does not confirm that progesterone itself is dangerous (or increases risk of BC) - and as I think I mentioned in my post yesterday morning there are studies showing no risk of breast cancer associated with progesterone itself (note to self - find these studies at some point - but v busy atm - maybe someone else can do so?) - which has been described as "breast friendly".
Freckles you make some helpful comments, and so glad you have found an HRT to suit you, but you turn every discussion about HRT into a call for members to visit Prof Studd, and to promote the 7 day progesterone regime (not to mention travel costs). This isn't really relevant to the thread and I really hate to think of women feeling inadequate or that they have failed or causing themselves risk if they cannot afford this expensive consultation!!! it is not necessary (to see him to get that HRT)!!!!
I think we all need to get some perspective and carry on making the decision we need to make based on our circumstances, age and stage. Personally I would not use synthetic progestogens because I have been on HRT for more than 9 years and in my 60's, but someone in their 40's who wants to take HRT say for 5 years should not worry one jot. It is sensible if you have been taking it some time and over 60 perhaps to review what type you are using and weigh up the risks if any.
And of course if we need to - lose weight, stop smoking, reduce alcohol, take more exercise, eat a healthy diet - to minimise these risks to health/reduce risk of cancer, but continue with HRT if it enables us to function in today''s society! Off out now!!!
Hurdity x
Well said Hurdity the voice of reason!
I'm sick to death of hearing about Prof Studd's regime and every post being turned on its head to promote it.
We're all different and we're all vulnerable and we don't have to spend money/credit on seeing him.
So frustrating, it's putting me off coming on to this forum. If it wasn't for Hurdity and quite a few other balanced views I wouldn't bother!
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Hear hear
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For some of us myself included . I had no choice but to go private , I have / had severe VA .
Various " experts " I have seen wanted to do pudendal nerve blocks / nerve blocks INTO my vagina / nerve blocks into my vestibule / Botox into my bladder. Potent steroid cream. A concoction of various drugs , with serious potential side effects.
I start d the potent steroid cream , at a time when I did as was told oh dear why a BIG mistake , I was told I had LS lichen Scerlosise.
My NHS gynae said you will want to be on HRT for a few months !!!!! a few months VA is for life.
I still see on here ladies being given short change, so yes it's good to be told there is help out there , if you are getting nowhere and where as desperate as I was.
So I then started researching ( at this point I was now suicidal ) I am 80% better it is VA. I kept saying to the experts is this VA , no your to young still having periods etc etc etc.
So yes the credit card has been my best friend , because unfortunately some of us do have to go private , and by passing on hat knowledge it may help someone else to not go through what I have , it wasn't just me but my husband / children also.
If a post " irritates" then look the other way.
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Can I just say that further to Freckles support (which backed up what several other members said to me many months ago) I called Prof Studd's secretary again. She was absolutely lovely and encouraged me to keep pestering my doctor until I found a regime that was right for me and that this was my right. So for now this is what I am going to do. She helped empower me in the same way ladies on here have.
Hopefully there is room for us all on here with our multiple menopause experiences. I tend to most tune in to those who are having similar experiences to me and some of these women have had a lot of success with Prof Studd and it's really good to know he is there along with a myriad of other options I am learning about via this site.
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For some of us myself included . I had no choice but to go private , I have / had severe VA .
Various " experts " I have seen wanted to do pudendal nerve blocks / nerve blocks INTO my vagina / nerve blocks into my vestibule / Botox into my bladder. Potent steroid cream. A concoction of various drugs , with serious potential side effects.
I start d the potent steroid cream , at a time when I did as was told oh dear why a BIG mistake , I was told I had LS lichen Scerlosise.
My NHS gynae said you will want to be on HRT for a few months !!!!! a few months VA is for life.
I still see on here ladies being given short change, so yes it's good to be told there is help out there , if you are getting nowhere and where as desperate as I was.
So I then started researching ( at this point I was now suicidal ) I am 80% better it is VA. I kept saying to the experts is this VA , no your to young still having periods etc etc etc.
So yes the credit card has been my best friend , because unfortunately some of us do have to go private , and by passing on hat knowledge it may help someone else to not go through what I have , it wasn't just me but my husband / children also.
If a post " irritates" then look the other way.
I have had severe VA; fortunately Femoston 2/10 combined with Ovestin cream prescribed to me on the NHS has resolved the problem with no need for me to 'go private'.
This is exactly the sort of post/attitude that makes me not want to come on here *looks the other way* :'(
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I genuinely do not understand my post offended you so much .
For me ( and others on here ) I tried the NHS route , i was offered very expensive procedures.
My GP said I could have vagifem twice a week , with the need of progesterone every now and then to protect the womb for two vagifem a
week !!!!
I always value Hurdity/ Dancing girls opinions ( and others ) who are so knowledgeable, but for some yes we do have to go private .
There's a lady I chat to privately on here , who has also had to go private as she so obviously had VA , but was getting nowhere and I had an update last week where she is much improved , and she has past on the knowledge to someone else who is now improved .
So I most definitely do not think my kind of post , requires someone to leave .
and I apologise if it has done so. 😊
I read posts here quite often by an OZ lady who suffers dreadfully from VA, and she said if she knew what she knows now she would have walked over broken glass , to have taken HRT , so for me that has had to be private.
A virtual 💐
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I for one, am happy to read input from all posters :) and am thankful for everyone's posts! :)
If there was a subject I wasn't interested in being discussed within a post, I would acknowledge that person's right to discuss it and hold that opinion, but perhaps just disregard for myself!
We are all valuable contributors surely? :) :thankyou: :foryou:
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Oh heck, there's another poster gone now.....
I think the reason Professor Studd is seen as the meno magician is because we are all getting short changed from the NHS and our GPs for a start!!! If you're lucky to have an understanding GP who is clued up on the meno, then that's great but most of us aren't in the fortunate position of having that so feel privately is the only way to go. Does it really matter if he gets mentioned so often for goodness sake???
Maryjane, you've absolutely nothing to apologise for.... >:(
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I have followed this thread because it is topical. Considering we are all at some point or other in menopause I am surprised there are not more spats and disagreements. On the whole I think the whole forum conducts itself well and has a nice balance to it. The occasional over reaction is inevitable given our hormonal situations and frustrations.
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I had to resort to the private route but saw someone local to me cost £180 ( less than my car insurance ) ! He perscribed the same as Prof Stud for half the price then wrote to my gp who then carried on prescribing utrogeston 200mg capsules and estrogen . Job done. :) some off us have good gps who would/can perscribe this straight off I think you just need to stand your ground in a polite way and state you want to try x,y or z.Studds regime isnt the be all for everyon. Remember that there are thousands of women out there on all sorts of pills,patches,combos all happily living their lives to the full ;)
Whatever works for you thats my motto ! :)
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The RCOG-BMS response is here
http://www.menopausematters.co.uk/newsitem.php?recordID=174/RCOG-BMS-response-to-Breast-Cancer-Now-Generations-Study-on-HRT-use-and-breast-cancer-risk
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I think that the reason some women find it upsetting to have private treatment recommended so enthusiastically, is that for some of us it just isn't possible. I was eventually able to get the help I needed via the NHS, but I know that when I was still looking for answers (and in constant discomfort from VA) I found it really stressful being told 'you need to go private'. I would get a real sense of panic rising because I knew there was no way I could afford a private consultation and if that was the only way, I was going to be in constant pain for the rest of my life! So I'm not surprised that women who are unable to afford a visit to Prof Studd get edgy when he is presented as either the only or the best solution. I don't think it is anything personal toward those who have benefitted from going private, it's more fear that there is no hope, no answer, no end in sight for them.
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If a post " irritates" then look the other way.
I have to say I agree. Some people will not be able to get what they need from a GP. Others will not be able to understand enough about what they need.
Some people need/want/have to go private. Yet it is very hard to find the private help you need and to find reliable witness accounts of it, so I for one appreciate seeing things about private doctors and their regimes on here. I am a private patient, not of Studd, but I'm considering changing what I'm doing because it's not working well and we've tried so many things. To make that change I may need to switch clinics. Hearing about the options on this forum is all good.
How else are we supposed to learn if we don't share our experiences?
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We are going off the original topic here, but I totally agree with your post Dorothy.
I am now on benefits, my savings gone & going through the menopause, suffering other health problems as well - no I cannot afford to go private, However I have paid into the NH all my 45 years of working life & this is only the second time I have made a claim.
To be honest, I suppose I am jealous of the ladies who can afford it, maybe they have husbands who are in well paid jobs, maybe they have private insurance. But it upsets me when I see members advising others to go private (as if they hadn't already considered it)- if only it was a viable option.
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I think there are lots of problems with prescribing hrt at the moment.
GPs have been on a rollercoaster for the last 20 years with all these studies coming out and hitting the headlines and turning things around, then quietly in the background, with further study, things are not so clear cut.
I am really pleased with Dr Currie's reply. The NICE guidelines have already taken this into account and still hold, and the work in getting them out there continues. There is hope that things will improve.
There is also the problem with those who hold the purse strings for prescriptions. When you look around, a lot of authorities are saying that GPS must prescribe Elleste duet as a first line, then if that doesn't work then Femoston, then if there are problems with that, they start on the transdermal. So things like Uterogestan will not be in every GP's everyday knowledge. The 'lowest dose possible for a max of 5 years' is still around too. So this is tying their hands too and it does not fit well with the guidelines.
Hopefully, with the knowledge you can get on here, you can work your way to a consultation (pref NHS) with someone who does know, so that the GP can be helped.
I do hate these big out of proportion headlines that are not followed through with vigour. Really it is just telling us what was already known but in a sensational way. They are also studies that focus breast cancer and not hrt. We have a lot more going on in our bodies.
I have looked at the Breakthrough Generation Study's pages and they have done a lot of work recently on identifying genes related to BC and hopefully they may come somewhere to finding how it is actually caused. Then we might be able to know what the risk is that is being tripled by HRT (whilst it is being used).
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This is going off topic I agree .....it was insolently mentioned by a lady ( can't remember name ) and I mentioned I have had to go private also.
This has become abit like the private / state school discussion.
I have not seen Prof Studd , I don't think his character would suit me.
But after being told I also had herpes twice and treated for it , plus all the other things I mentioned we took out an interest free CC ( not that that matters TBH ).
There will always be those more fortunate in life , but that does not mean that these people can't mention they go private as those , who can go private by whatever means may be glad of these ladies experiences.
For those of us who do go private , we are freeing up the NHS anyway.
I was so desperate I would have sold items on e-bay TBH.
To say only one sector of the meno ladies on here can post , for fear of upsetting others is rather ????
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Interesting reading, and helpful in the wake of newspaper stories and latest findings.
There seems a lot of confusion regarding oestrogen and progesterone and which is most risky regarding breast cancer.
There is also confusion on best delivvery of HRT, it seems most studies are on oral tablets if combined HRT, which in my understanding are processed and utilised by the body in a different way to transdermal.
I use oestrogel,and have the mirena coil for progestogen, I understand minimal amounts of the progestogen enter the blood stream due to the location of the coil.
In this day and age, it concerns me the Russian roulette we are left to play regarding HRT and conflicting advice and research results.
Firstly to make a decision on whether to take HRT is bad enough, then what firm, then what dose age, etc etc… it's unfair and it's crazy that at what is a crazy time of life for us women, we are made to feel more crazy with our treatment choice 😡😡😡
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I am trying so hard to get the regime I think might work best for me via the NHS but if it doesn't work I think I could possibly put the £300 quoted to see Prof Studd on a credit card. I too am currently on benefits due to long term ill health, have no savings, live a hand to mouth existence and have not a soul I could ask for money. I could resent putting money on a credit card for private treatment and am also angry that it can be such a battle to get what we need on the NHS but my life seriously isn't worth living like this and I'd have no qualms about ending either (please don't worry I am quite sane, have thought it through very carefully and it will impact nobody) but the ultimatum I gave myself is not until I had exhausted all routes. I'm that desperate now and even though I only have £30.48 to my name am glad and grateful to know about ALL options.
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However: unless 1 phones the Private Hospital to ask for a list of charges, one won't know even within areas what a private appt. will cost. In the 1990s I was paying £70 for an hour's psychological counselling and my breast treatment was paid via work insurance, for which tax was taken 'as a perk' ::).
For piece of mind, a 1-off private appt. is often worth spending the money on. After all we can't take money with us ;-). In many cases a private consultant will be a part-time employee of the NHS - so a patient may well see the same Consultant privately who can do the consult, recommend treatment if necessary and refer back to the NHS waiting list if it's a non-urgent situation.
Private Consultants who work out of Harley Street etc. charge a lot more. It may not be possible transfer to the NHS from that kind of private clinics.
Worth ringing round to ask the question then decide whether to stick with the NHS/not. It would worry me if the private info I was given differed from what is available on the NHS :-\
Quality of Life girl, Quality of Life!
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Oh, gawd!!! Another 'study'. I really wish the press would stop grabbing on everything to do with women's health and whipping up hysteria, especially anything to do with HRT. As you all know, I am uterus and ovary-less but do read with great interest all of your posts on the trials of progesterone. I'm thinking very strongly that this aspect of HRT needs a serious reconsideration by the medical community as the synthetic progs. seem so problematic and there is so much conflicting advice with the Utrogestan on exactly HOW to use it. A complete nightmare at a time when women need effective regimes that actually work!! For a health professional to say 'oh, but your hot flushes have diminished haven't they' when you feel like crap on the regime you're on is nothing short of a disgrace. When are they going to realise it's NOT ALL ABOUT HOT FLUSHES????
This is why the private sector is thriving. Every woman is treated as an individual, and not just given an HRT picked by their GP just because it's the one that the majority of women in their practice gets along with (I suspect a lot of them DONT get along with it and give up, and then shuffle off in despair to haunt the aisles of a well known chain of health stores in pursuit of something, ANYTHING that might help).
I'm adding to my private healthcare fund weekly. I've TOLD Hubby that this is how it's going to be, if I don't find the improvement to my quality of life via the NHS that I need. He's just bought a new car, so its not like he can argue!!!
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My first post on MM so forgive me if I get it wrong!
Interestingly, my first exposure to this news was by a woefully ill-advised meno nurse who seemed to delight in imparting such 'bad news'. This nurse, by the way, was sketchy on the difference between conti and Sequi. It's beggars belief sometimes. She obviously disapproved of hrt and it's not the first time at this clinic that I've had 'odd' treatment. Things such as "well, yes, it's ok but obviously you need to remember you'll be coming off this soon" and "I'm happy to prescribe this with a view to discussing coming off at some point soon" - always women and always delivered in a pointed tone. I've been using hrt for 5 years so not quite ready to give up! The most eye opening statement was from the actual consultant who stated that I wasn't to get too 'hung up' on bio- identical hrt and would give me a scan and all other singing and dancing add-ons if I had a mirena fitted! What's this about? Budgets? She also disallowed alt day utrogest use but has allowed it on here for another lady who visited her. On the day after a flawed study scares women into stopping their hrt and enduring miserable half lives the very people who should help are advocating the drugs that might be causing the problems!
This needs to stop! And I'm not convinced it's not linked to anti depressant drug companies pressure.
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Stellajane, let me tell you that they already see HRT in surgical menopause as 'non essential'! I was fobbed off for over a year following my surgery, and I was only 46 when I had my operation.
I can see the day coming, I really can. GP's already see it as us just being neurotic (I know I'm generalising, but i should say this has been my experience and the experience of many other ladies I have spoken to recently who are in natural menopause).
I was also told by my GP that she has a '3 strikes and then you're out' policy on HRT. This was before I kicked up such a big fuss recently and my Hubby complained and I got a referral to a Menopause Consultant. The GP said if I tried three types and then couldn't settle on any of them, then I would have to have antidepressants instead. Although I have to say that she put me on antidepressants first when I first asked for HRT! I tried 3 of those, and felt horrible and had problems with all of them. >:(
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As said earlier - this is not even published properly yet.
Terrible for a Nurse to even comment. Nurse is not even qualified to make that judgement or understand the figure or the impact it has on people.
She's wrong on 5 years as there is no limit for ladies to take hrt now - its up to you.
Even the numbers in 1000 - 14 to 34 was mentioned but no specific type (5 years or 15 years!!!) terrible reporting btw. All for the OOOH! factor perhaps.
The 54% mentioned would be 14 to 21 surely ? so where do we get the 34.
14 to 34 is actually an increase of just over 140%!!? Someone is either making this up or has no idea how to count. >:(
We are really only talking about 1.5 to 3.0% change here (within 1000).
Is this just re-running the numbers from other reports and studies as they did a few years ago.
In any study they run you could get variations each time you run the numbers and the people involved within these sort of numbers.
These studies dont fully explore or explain the group that made up the increase in numbers.
1) had they had children (i'll come back to that)
2) do they drink or have been honest about drinking alcohol
3) what other lifestyle traits did they have (smoking, eating smoked meats etc) dont laugh
4) where they lived (pollution)
5) what their own genetics/dna would cause
Ultimately, until we are informed on the wider issues and are able to discern the true cause then we are always going to be unsure.
Blaming it on one thing seems unfair and seems to lead to scare stories - especially when there are some many factors including damned "LUCK"!
If they really cared then if they pushed for more ladies to stop drinking then the breast cancer rate would plummet.
Just look at Cancer Research's own figures - the increase in Breast Cancer over the years follows the availability/affordability of Alcohol!
Coincidence?
However we dont see anyone trying to stop us enjoying alcohol on a regular as we like basis (or in the same hard line manner as the nurse mentioned above).
Going back to having kids, the breast is made up of cells, and the cells change when we have kids.
There is evidence that having kids and breast feeding protects the breasts.
However when pushed there is nowhere to check on which ladies had the extra cancers.
Did they have kids, did they drink, did they have traits that would have led to this cancers anyway? Your guess is as good as mine.
Just remember they hid the results for Estrogen only HRT actually seemed to reduce Breast Cancer!
A lot needs to be answered before we put ourselves and our lives back to before the introduction of the pill and hrt.
Or perhaps thats what some want.
:o
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I hope we don't come to a time where treating symptoms of menopause at normal age is seen as non-essential on the NHS. Unfortunately its not difficult to forsee a time when only women undergoing early menopause would be treated, with the rest having to go to a private clinic, or suffer.
Hahaha! Try getting early meno treated even now! Took me 5 years to get any kind of help! Best comment I had was from a (female) gynae who asked me why I was 'bothering' them and taking up 'women's healthcare resources' when I wasn't able to have children... Presumably only those with good 'breeding' potential are worthy of precious NHS resources. >:(
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Dorothy, that is BEYOND disgusting!!!!!!!! I'm so sorry you were treated so appallingly!!! :steamed:
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Just stick to the "pill" instead - dont come off it early. No need to await HRT - and the pill is free. Just ensure your pill is a single / mono phasic one - so you'll get the same estrogen portion thru the month ;)
Just an update, they are playing with tiny numbers!!!
http://breastcancernow.org/news-and-blogs/news/effect-of-combined-hrt-on-breast-cancer-risk-likely-to-have-been-underestimated
This is all that can be found and seems to contradict the Telegraph report - if we're even on the same planet :o
This overview mentions a risk increase from 1.7 to 2.7 - this is where the telegraph gets its 54%.
Bare in mind that the risk for alcohol - depending on how much you consume is in the same "window" of risk (1.5 to 3.0) for Breast Cancer.
1.0 would mean no risk or change btw.
I can't really see their real figures from this page - but it seems familiar (100000 ladies) (39000 meno) etc etc. I'm sure I've seen this before.
But bare in mind this. The 3.3 times figure they are talking about is 3.3 times the extra ones they think might be getting it from HRT.
So
if they found that in every 1000 ladies 20 got Breast Cancer (without HRT)
if they found that in every 1000 ladies 21 got Breast Cancer (with HRT original study)
if they found that in every 1000 ladies 24.3 got Breast Cancer (with HRT newish study??)
So the newish study has 3.3 times more ?! Now you can see how they are playing with very small numbers here.
However anyone getting cancer is a terrible thing. However its even more terrible to play constantly with ladies and families lives on the back of statistics.
Run this again and again and they will get a different answer each time, up , down , the same. That is what statistics are.
Statistics is the study of the collection, analysis, interpretation, presentation, and organization of data.
Any change or deviation in the way any of those items are done and you'll get a new and different result.
So if we just did this for teetotal ladies the answer would be different again but it maybe the same ;)
Just google "Misuse of Statistics" ;)
As I said earlier - these are similar to what you'd see if someone drank a lot of alcohol in risk terms and numbers of extra breast cancers.
They also go onto say that 90 genetics issues have been associated with breast cancers - and thats sounds like an awful lot of combinations thru the number of woman they followed up over 6 years only (not the 40 years total mentioned)
In all its still very unclear what they are trying to get thru here - as this is all numbers, issues and scare stories that have been rolled out many times.
Could this be sour grapes after NICE setting out in a new direction with HRT?
::)
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My first post on MM so forgive me if I get it wrong!
Interestingly, my first exposure to this news was by a woefully ill-advised meno nurse who seemed to delight in imparting such 'bad news'. This nurse, by the way, was sketchy on the difference between conti and Sequi. It's beggars belief sometimes. She obviously disapproved of hrt and it's not the first time at this clinic that I've had 'odd' treatment. Things such as "well, yes, it's ok but obviously you need to remember you'll be coming off this soon" and "I'm happy to prescribe this with a view to discussing coming off at some point soon" - always women and always delivered in a pointed tone. I've been using hrt for 5 years so not quite ready to give up! The most eye opening statement was from the actual consultant who stated that I wasn't to get too 'hung up' on bio- identical hrt and would give me a scan and all other singing and dancing add-ons if I had a mirena fitted! What's this about? Budgets? She also disallowed alt day utrogest use but has allowed it on here for another lady who visited her. On the day after a flawed study scares women into stopping their hrt and enduring miserable half lives the very people who should help are advocating the drugs that might be causing the problems!
This needs to stop! And I'm not convinced it's not linked to anti depressant drug companies pressure.
Hi Dawncam - sorry your post seems to have been missed - if it had been in the new members section it would have been seen but it got lost amidst all the controversy about the recent news!
I agree your treatment is poor and yet another example of ill-informed medical professionals. The meno-nurse should not be practising if she doesn't know such basic information! Also the consultant not giving you the respect to decide your own course of treatment ( I presume you mean oestrogen and progesterone when you mention bio-identical - and not the expensive compounded treatment?).
I hope you manage to get the treatment you need :)
:welcomemm:
Hurdity x
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Welcome Dawncam - start a thread about yourself so that you don't get 'missed' ?
I was disgusted that The Telegraph became yet another headline grabber >:( :cuss:
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This latest announcement has got me thinking!!!??? I'm probably completely ‘off the wall' here but I want to share...
The observations of this research/study, so comparing the women who have used HRT and those that have not, throws up some interesting questions:
Firstly, as we have all quickly picked up on - why is it combined HRT, which includes progesterone, that brings this very small additional risk of developing breast cancer - why aren't they looking at this in more detail as progesterone could be a key causal trigger for BC - research into this in all women (whether taking any hormones or not) could be interesting. A study looking at women's hormone levels overall might throw up some clues? Is it the menopause itself with all the hormonal fluctuations that brings the trigger for BC?
The claims of this study are not saying HRT actually causes breast cancer - as Dr. Currie pointed out - in fact I think the earlier findings actually showed that hysterectomised women were at lower risk of getting BC if using oestrogen - maybe this has changed???.
It is well known that women from their mid 50s and through their 60s,70s (when oestrogen levels are at their lowest ) are increasingly more likely to develop breast cancer (whether they take HRT or not) so I assume the claim is that HRT might encourage those who are already at risk to develop cancer sooner or perhaps that BC might not have developed without the presence of progesterone.
This leads me to question: Are women who need HRT because meno symptoms are quite severe and life limiting, perhaps slightly more prone to developing BC anyway? Do women who sail through their menopause have a good low level of oestrogen through peri and post meno which is actually protective? Genetics has a very big role to play in whether we develop BC or not and life style choices are also crucial but are they ignoring some other crucial factors.
Perhaps getting the right hormone treatment for women, who suffer bad meno symptoms, might actually be protective? We know that HRT protects the heart and bones for the long term - perhaps better hormone treatment is the key?
The post BC treatment of giving tamoxifen may reduce oestrogen in the body but brings the risk of developing womb cancer - not sure why - does the womb lining over thin or become thickened? In the absence of oestrogen do other hormonal or chemical reactions in our bodies cause cancer triggers or problems? Tamoxifen seems to be given to all BC patients and I assume not all these BC cases were oestrogen receptive - should they not be more careful about who gets Tamoxifen?
One of the good things that comes out of this study is the confirmation that oestrogen alone is not a risk factor, so for those of us who will need local oestrogen for VA and bladder problems should not be denied life long treatment for these problems.
I think this study throws up more questions than conclusions and facts. The medical and research scientists really do need to be more cautious about how they present findings - they know that the media loves to over blow scary stuff. There are so few certainties in life but spreading unnecessary fears is also irresponsible - it can ruin lives. DG x
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I hope we don't come to a time where treating symptoms of menopause at normal age is seen as non-essential on the NHS. Unfortunately its not difficult to forsee a time when only women undergoing early menopause would be treated, with the rest having to go to a private clinic, or suffer.
Theresa May's bound to be on HRT (you'd have to be, to cope with doing her job) and hopefully she will have empathy and ensure that HRT remains available on the NHS for the foreseeable future.
We can but hope!
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Yes, hotstuff and Stellajane - I can certainly see the day when many things will only be available privately. Many treatments are being rationed and if there are any risks with HRT (however small) then this gives a wonderful excuse not to have it as standard treatment - we have a blame culture these days with many seeking compensation that might make prescribing HRT something the NHS does not want responsibility for.
When I was suffering with depression my GP did prescribe Prozac for me. Our local chemist printed out the side effects and actually took time to explain these to me; he was concerned about me taking them - I had small children at that time and was even taking other peoples children on the school run in my car as well - he knew this and wanted me to be aware that I might not be safe to look after the children in the first few weeks. His advice was invaluable and I decided not to take these drugs. It is known that many people react very badly to ADs/SRRIs, particularly in the first few weeks, yet they are dished out without any warnings or advice by most GPs. I believe there are also now concerns about long term use of ADs/SRRIs!!!
Ironically, I know 4 women who have had BC and non of them had HRT - one died aged 52, one had extensive treatment with mastectomy plus chemo, radiation etc. when she was 55 - another had very early stages but still had mastectomy and she was 52 and the forth just had a bit of chemo when she was 63. All slim, fit, good diets etc. and no family history of BC. I know a lady in her late 80s still on HRT - she is slim and fit, she is not bent with osteoporosis but agile, alert and full of life.
We get quite a few women posting on MM who have experienced early menopause and simply told they have to ‘ride the storm' and not given HRT by their GPs or taken off it too early because of the 5 year cut off. I do hope these women sue the NHS for malpractice should they develop heart disease or osteoporosis?
I have to say, if I was in my 30s or even mid 40s and my GP or even the gynae refused HRT, I would ask he or she to put in writing why they do not believe I need HRT as I would want evidence in the event I develop heart disease or osteoporosis. It's sad we might need to resort to this kind of tactic.
Menopause is part of the ageing process and the consequences of oestrogen deficiency is very clear. As prevention is the key in terms of keeping us healthier for longer, keeping us all productive in the workplace for longer and saving the NHS and the country money, it would make far more sense they spend time and money on researching what can be done to prevent the negative effects of this oestrogen deficiency - sadly good lifestyle choices are simply not enough for many.
Dg x
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My vaginal atrophy was so bad that I require local and full HRT , and quite frankly I don't think I would be here if HRT is taken from me because of reports like this.
Three times the risk , you still need to realise the amount in percentages though.
I no three ladies with BC , one extremely aggressive NONE of them have ever been on HRT.
I have considered a hyster to get rid of the progesterone part, but that comes along with potential problems later also with a vaginal vault prolapse.
We are damned if we do and damned if we don't. 😔
Without HRT I think I would have committed suicide by now, my flushes and moods were terrible, and I would put the moods akin with drug withdrawal.
I will continue to take HRT, it's my body, and it should be upto me if I want to run the risk of breast cancer.
I would rather die of breast cancer at 50yrs old, than live to 85yrs old miserable.
Quality of life is the bottom line, not quantity.
I don't have the money to go private, but doctors don't own my body.
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I am trying so hard to get the regime I think might work best for me via the NHS but if it doesn't work I think I could possibly put the £300 quoted to see Prof Studd on a credit card. I too am currently on benefits due to long term ill health, have no savings, live a hand to mouth existence and have not a soul I could ask for money. I could resent putting money on a credit card for private treatment and am also angry that it can be such a battle to get what we need on the NHS but my life seriously isn't worth living like this and I'd have no qualms about ending either (please don't worry I am quite sane, have thought it through very carefully and it will impact nobody) but the ultimatum I gave myself is not until I had exhausted all routes. I'm that desperate now and even though I only have £30.48 to my name am glad and grateful to know about ALL options.
Without HRT, my life would not be worth living. Started flushes at 42rs old, blamed meds. They got worse and worse and I got anxious about the most ridiculous things, but they would worry me sick. No quality of life. No family either, well I do have one, but I keep away from them, because my life would not be worth living with them in iit.
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Thank you Hurdity and CLKD - I'm afraid I don't know how to start a thread about myself or the newbie section. Would you please direct me. Many thanks
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Thank you Menomale - really interesting post. Biology is fascinating stuff - your post really highlights why the menopause is such a dramatic and tough time for many of us - hormone loss and hormone imbalance as we age must reek havoc with our bodies and naturally make us more vulnerable to getting cancer generally. DG x
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Thank you Hurdity and CLKD - I'm afraid I don't know how to start a thread about myself or the newbie section. Would you please direct me. Many thanks
Go to the section you want to put the new thread in (e.g. to introduce yourself, go to General Discussion and click on 'New Members') At the top of the list of topics there is a blue bar on the right hand side. Click where it says 'new topic', enter your topic title, type your message and post.
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Menomale, that is very thoughtful. Thank you! :)
I really do believe totally in what you say that it is a very personal experience that needs to be lived. I have read so many varying experiences of women here in both how the menopause affects them, and their reactions to the HRT's they take (and the experiences of those who choose to take nothing or choose to quit taking HRT).
If we really are all the same, we should all be doing great on one type and dose of HRT (or nothing at all) but we are not.
I think this is something that we ALL need to remember when we beat ourselves up for maybe not doing as well as others on a certain regime, or in my case having a catastrophically bad time on one particular type of HRT. It can be so disheartening (if not downright distressing).
To cap it all, it would help greatly if medical professionals took off the blinkers and started treating the individual, rather than the diagnosis. The onus seems to be on the patient to fit the treatment, instead of the treatment fitting the patient. We need a game change!
Of course what would be perfect would be the invention of an 'intelligent' form of HRT which could deliver the right amount of hormones on demand according to the individual's needs. This would be the only way possible of ensuring a perfect fit (along with developing truly bioidentical hormones, but of course these would be variable due to the individual's genetic make up). We will doubtless not benefit from any such developments in our lifetimes, sadly.
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I know it's up to me if I use HRT or not, but I am concerned as I have had precancerous breast lumps, the last one was over 10 years ago I had removed in my mid 40s. I did take advice from an HRT specialist privately and he said it was fine to go ahead with HRT. I feel so much better since I have been on HRT for the past year, but think maybe I should stop, just don't want to go back to all those horrible symptoms again. My mum had breast cancer, she never took HRT. I feel like I am playing with fire!
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I too am debating coming off HRT after only 8 months on it, following this weeks press release. I use mirena coil and oestrogel, it has helped with hit flushes and anxiety is so much better, as are mood swings.
I originally had estriole cream as one of my worst symptoms has been overactive bladder, which was thought to be due to lack of oestrogen, however it has been really bothersome again recently and I have been on vesicare for my bladder for the past two weeks, and the difference it has made is great.
I am scared to stay on HRT for long, but I am equally scared the horrendous anxiety and mood swings might return if I come off it.
But then what's a hot flush or mood swing or even anxiety compared to potentially getting breast cancer?
What to do? What to do? Hate this crazy roller coaster I just need some stability
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Hi
Article in yesterday's paper online (DM) with expert opinions including Dr Currie about this, worth reading.
Usual comments from the public including those who say meditation and diet will cure symptoms...yeah right, for those lucky ones!
Although most did recognise that women these days are carrying a much greater load (kids, aged parents and having to work until nearly 70!) and they need something to help them do this whilst battling symptoms. Even if you don't have all that it's still debilitating!
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I feel so angry that, once again, we have women considering giving up HRT simply because of a media report. This is deja vu of what happened before, not that I was personally involved in that WHI scare, but it has been publicly acknowledged by the International Menopause Society that a whole generation of women were forced to suffer because of a completely misguided study and media sensation.
Are we going to allow this to happen yet again!!! I say NO!!!!!
Don't bow to the media sensationalism or the guilt trips that are always put on women simply because we don't want to be martyrs and suffer through it. We've already had Dr Currie's take on this whole thing, so don't fall into the trap of making knee-jerk decisions.
Let's be honest with ourselves. Say you are 55 or 60 now and you are taking HRT and living a pretty normal life again. What would you prefer? To continue living that normal life and maybe, just maybe, have it shortened slightly due to cancer, which may not have been caused by HRT anyway. Or would you prefer to go without HRT totally, live until you're 95, but be suffering from hot flushes, insomnia, anxiety, depression, osteoporosis, and a whole host of other ailments, and eventually die after living a miserable 30 years. I know what I prefer.
If your symptoms aren't too bad and you don't want to take the perceived risk of HRT, then don't take it. However, if you had the kind of symptoms I had before HRT there is no way in hell you would be giving it up, even if my life is shortened by 10-20 years. We are all going to die eventually anyway. Does it really matter if it's when you're 70 or when you're 85? It's going to happen whether you like it or not.
I frankly don't care if I die at 70, as long as the remainder of my life is a happy and healthy one, and I know it won't be if I stop HRT. In fact I'll probably top myself without HRT anyway, so it won't be a long life anyway.
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Meno male said ". I'll be in constant watch mode to promptly address any change on my body/mind that could mean something is going wrong. I'll keep in mind that there are side effects and that it takes a while as my body adjusts itself to the hormonal change'
That's how I am now, constantly checking my breasts, looking for change, feeling for lumps, it's crazy health anxiety, stirred by this bloody latest scare!
And any change, once it's there would be too late do anything to prevent it.
I feel damned if I stay on it, and damned if I come off it!… feel like screaming, it took me so long to feel ok about trying HRT, and when I first went on it, I bent the poor ears of dancin girl and Hurdity with my anxiety and worries, the NICE report made me feel more at ease, and the improvements from using HRT made me very emotional at first, a feeling of what I had been depriving myself of, a return to feeling a lot more ME!
And now this!! I could and do cry over the worry it has caused, when are we going to feel it's ok? When are we ever going to be given the full picture, not bits here and there, not one year one story, next year another? We are being used as Guinea pigs, no one seems to know, seems like it's a battle between oncologists and gynaecologists.
This roller coaster has to stop, my brain can't cope with all the complicated statistics and trial figures, informed choice my arse! (Sorry) I made an 'informed choice' so I thought, last year, now the information has changed, yet again!… just feeling so confused, and at the moment every time I rub in my oestrogel, or think of the progestogen from my mirena coil, I feel like a time bomb
😟😟😢😢
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I feel like that with wine nowdays ever since that woman talked about the cancer risk. Every time I have my nightly glass (which puts me smack on the limit each week) I feel like I'm drinking a glass of cancer! It's daft and stops enjoyment in life.
We do need to be told about any new findings in relation to health and possible risks from treatments but it is then important to look at things logically, which I realise is difficult for us in our hormonal state, and we should read Dr Currie's advice and stick with that. I have three friends at the moment going through treatment for breast cancer and none of them have ever taken HRT.
Taz x
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I so agree Taz. I am more than happy to be guided by Dr Currie I doubt if there is anyone on the planet that knows as much as Meno/HRT as Dr. Currie.
If any of us on HRT find difficulty in obtaining HRT from our doctors I wonder what would happen if we said we would be happy to sign a document saying we are totally aware of any risks etc but still want to take HRT, could they still refuse it?
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It is difficult with the way these studies are presented in the press. If it were anything else, the results would probably go through committees and people like Dr Curry, where they would be assessed and the results verified, before they even saw the light of the press.
It is terribly hard dealing with it in real life at times. I had 2 mammograms, and a recall by the time I was 51, with the breast screening service, even though I had no worries on that score ever before and now I am worried, in the back of my mind, every time I have a flicker of a normal change. I don't think coming off hrt would make a difference, though, because the small possibility is still there.
I take heart from my in-laws though. They both died early from cancer within a year of each other. They lived quiet sensible lives, had parents who lived until their late 80s/90s, drank sherry at weddings, spent a lot of time outdoors and walking, cycling. They followed the health advice, and had all their check ups and never left anything too late. They both had unusual cancers that were too late to treat. Nothing could have been done to stop it. My mother-in-law said that she had had a good life and no regrets. It was a huge shock at the time, but after a while, I realised that you have to enjoy what you have.
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Not only hormonal fluctuations, but low or virtually non existent estrogen levels Menomale.
I speak from my own experience in surgical menopause. The symptoms of extremely low or virtually non existent estrogen on the brain and body are beyond devastating. Everything, and I mean everything, ceases to function correctly. If left in this position, the estrogen receptors (which are present in many organs in the body) then down regulate, which means that if you then introduce a source of ERT into the body, it either fails to react as quickly or reacts in an unpredictable or violent manner.
Also the strain on the adrenal glands from the sudden removal of the ovaries is enormous, and they often cannot cope with this sudden demand if an adequate level of ERT isn't introduced.
My SIL who is a biochemist spoke to a colleague this week who is a Consultant Endocrinologist on my behalf, and this was his explanation.
This of course would not be so violent in women whose ovaries are intact and at least producing a trickle of hormones post menopause.
I would love to see a counterbalance study of this very issue. No one has to my knowledge done a comprehensive study of the effects of declining estrogen on the body. But I can categorically say from my own experience that this situation at its worse (say, in surgical menopause) is a greater risk to health than ERT would ever be. It is known that removal of the ovaries increases significantly the risk of developing ALL other known cancers.
I know my situation is different to many here on MM (there are a few of us surgical menopause ladies around, but we are of course the vast minority). But it certainly gives food for thought when looking at 'the other side of the coin', as it were.
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Personally I am not hung up on the age I live to, although I would like to see my 60s and 70s, but if I live to 94, like both my grandmothers (neither of whom ever heard of HRT) it does not necessarily mean that I am going to end up like Dana said 'hot flushes, insomnia, anxiety, depression, osteoporosis, and a whole host of other ailments, and eventually die after living a miserable 30 years.'.
My Nanna was never miserable, depressed or anxious in her life and neither of them had osteoporosis or any sort of heart trouble. they were pretty healthy and saw their grandchildren and great grandchildren growing up. A cancer death is no picnic, I saw my mum die of cancer and no, she didn't take any HRT either.
Life is for living, just live it
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I agree with you Tempest, I would love to see a survey done into the effects of low estrogen on the body. Maybe that would throw up more problems than this latest report does! Bowel cancer, heart disease, etc etc. It all seems so one sided .....
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Agree with you Babyjane :)
After witnessing and being part of a very traumatic event 3 years ago and still dealing with the fallout to some extent I have changed my outlook on life.
I live for today and am not worrying about the future.
I hope to be able to continue with my HRT if it suits ( still early days) and am not worrying about this latest report.
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I wonder who funded this study? Us, the taxpayers? There are huge cash incentives for churning this kind of stuff out and they just keep it rolling because it's easy money. What kind of health scare will they come up with next week? Anyone could have conducted that study, it's not difficult but it is lucrative. And it's not just HRT, it's drinking, smoking, vaping, standing on your head, you name it, there is a study on it but what do they actually achieve and do they offer 100% cast iron guarantees? No.
OK, so we have known for some time that synthetic progesterone, progestogens, progestins (whatever you want to call them) which are used in HRT preparations are bad news but it doesn't take a genius to work that out.
We know that synthetic progesterone carries a slightly increased risk of breast cancer and it also causes some very nasty side effects in many women, it doesn't actually serve any purpose for symptom relief and is only useful for keeping womb lining thin. All the feelgood factor and symptom control comes from the oestrogen part of HRT.
So instead of wasting time on meaningless, duplicated studies, why don't these people come up with something useful like a non-hormonal replacement for synthetic progesterone? This would revolutionise HRT, remove all the risks and women would feel better for not having to take the dreaded progesterone. Job done.
I hate synthetic progesterone and wouldn't put anything past it because I have seen what it is capable of doing (my silent migraines) but for those women who are happy with their current continuous combined regime, I would say carry on with it because the risks are very small.
For women who are about to start HRT from scratch, I would look at a cylical regime and keep the progesterone to a minimum.
You have a choice, you either take control of your own life or you allow yourself to be controlled and held to ransom by these pointless studies. If you stop taking HRT because of it, they have won and you could be faced with a whole host of health nasties in later life and for what?
I have to say I am not worried in the least.
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There are some really good explanations on here from apt of you ladies 😊 Why don't you send your views to the powers that be ?
I could never write and explain in the way some of you have. 😊
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Where would we start though Maryjane? GPs; MPs; direct to the Minister of Health; NICE :-\ ……… start a thread in the letters page of The Telegraph ………..
Petition - how many signatures are required for something to be discussed in Parliament?
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I'm wondering if Utrogestan is as much of a "risk" as the synthetics. I think I've read that it's not considered to be so, but quite frankly, who knows what to believe.....
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This is the thing Liz, we are told something is a safer alternative , then a few years later all the reports are turned on their heads. Think back to the butter versus margarine debate. No wonder we don't know what to believe these days.
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Petition - how many signatures are required for something to be discussed in Parliament?
[/quote]
Is it 10,000?
I've signed e petitions that people have circulated on social media , it's amazing how the signatures soon mount up. If anyone knows how to get one organised I would post it on my Facebook page and ask my friends to pass it around.
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Another case in point are Statin drugs. Just a short while back, it was lauded as the drug group that was going to save us all, and prevent all manner of health complications in later life. Everyone in middle age was going to be advised to take them at one point. Now opinion is changing.
A friend of mine works in biochemistry here in Glasgow. Senior guy. (I seem to know a lot of biochemists)! He says that he sees some disturbing patterns in biochemistry results from patients who take Statins, and that he wouldn't touch them with a ten foot barge pole (!).
No wonder we're all confused and frightened these days. Opinions vary and advice changes at the drop of hat, often switching back and forth. In the case of HRT, I would tend to go with what I have seen. And I have seen quite a few spry elderly ladies who have done very well on it for years, and continue to do so (my Nana was one of them)!
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Personally I am not hung up on the age I live to, although I would like to see my 60s and 70s, but if I live to 94, like both my grandmothers (neither of whom ever heard of HRT) it does not necessarily mean that I am going to end up like Dana said 'hot flushes, insomnia, anxiety, depression, osteoporosis, and a whole host of other ailments, and eventually die after living a miserable 30 years.'.
Life is for living, just live it
Sorry, the intent of my message may have gotten a bit jumbled because I when I wrote it I was truly angry on behalf of these poor women who are now scared to death of being on hrt, simply because of a media report. It's not their fault they have to feel like this. I totally blame the media for blowing up these things and scaring the bejesus out of women who at a very vulnerable time of their lives.
I didn't mean that every woman who lives to a ripe old age is going to suffer. However, my grandmother lived until she was 85 and she was a very miserable old woman. She died over 42 years ago, when I was 15, so hrt was hardly heard of back then, but for as long as I could remember she was always described as "sickly". Yet she was a woman who had raised 6 children, lived through the depression and war, had to chop her own wood, and had a husband die in a horrible freak accident at a fairly young age. She survived all that, but in her later years she was more or less bedridden, and doctors could never really find anything wrong with her. They put it down to her "nerves". Looking back now, with all my meno experiences, I'm certain she suffered until she died from menopause symptoms, and possibly that's why my symptoms were so bad, and I might become her if I go off hrt. I have a lot of longevity in my family. Most of them die in their late 80s/early 90s, so I certainly don't want to live that long and be suffering the whole time. Ironically she died with dementia and undiagnosed bowel cancer.
I think what I'm trying to say is that we are all "ticking time bombs", even from the day we are born. None of us know what we are going to die from or when it's going to happen, so I agree with you that "life is for living".
To those who are worrying about everything I just say this. If hrt is bringing you relief and you are able to live a normal life, honestly who cares if it's maybe shorted a little bit. I'm also not that hung up on how long I live. I would like to live for another 10 years, mainly because I've got two cats who are now 9, so I would like to outlive them, but after that I honestly don't care because I know it's going to happen to me eventually anyway. Live for today.
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HRT is the onlything that cured my horrible flushes and ibs etc, I'd rather die of cancer in my 50's than live till my 80's miserable as sin.
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A question: What is the difference really, between HRT and the contraceptive pill ? In terms of its contents I mean. Bother are oestrogen, progesterone or a combination of the two and we are not hearing about how the pill gives people cancer (or maybe we are and I am badly informed).
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I'm not sure of the scientific answer to this but some of the cancers are due to the amount of years our body is exposed to oestrogen I believe. This is why is you begin your periods early or finish them late, or are both an early starter and late finisher, your risk of some cancers is higher.
If you have a Google you will find quite a lot of studies and articles relating to the bcp's role in cancer. The info on the Cancer Research site states that the combined pill raises the risk of both breast and cervical cancer but reduces the risk of womb and ovarian cancer. http://www.cancerresearchuk.org/about-cancer/causes-of-cancer/hormones-and-cancer/the-contraceptive-pill
Taz x :-\
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Hi Taz - sorry but if that was the case we'd see far more "early" years in teens and twenties of exposure to Estrogen.
The studies have shown that estrogen only HRT "Reduces" the risk of Breast Cancer.
Ultimately it maybe down to a mixture of lifestyle, luck, cell turnover, mistakes in a process, and a single cell going rogue.
Estrogen is what our bodies expect.
For example alcohol - interacts badly with estrogen and your body metabolises cancerous agents as by products. Even at the point where its washing around your mouth before you've even swallowed.
I'm not against alcohol but I'd love to see a more balanced reporting on things that are dangerous for ladies.
Since the late 1970s, breast cancer incidence rates have increased by 64% in females. Over a period of time where availability, cost and attitude to alcohol has changed beyond anyone's expectations.
Nearly half of BC's are in over 65's, most of which would have stopped HRT with pre NICE update this year (stats say that risk returns to normal within 2 years). So we should see a reduction if Doc's have been stopping ladies artificially at 60!!
The evidence also points to "lifestyle" as the stats show those who are classed as deprived (low income etc) have lower breast cancer rates than those in least deprived (high disposable income) category.
:o
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Lifestyle is key, genetics are key - making HRT the bad boy with the BC risk is simply muddying the water.
The rise in BC cases is probably as much about women living longer anyway,100 years ago we were lucky to get to 50 and in the 1950s we were lucky to get to 65. We all have to die of something and the issues around the menopause and the consequences of oestrogen deficiency are a relatively modern problem because we are living longer.
They do not DARE to highlight the risks to do with the contraceptive pill or there will be a massive rise in unwanted pregnancies and abortion - so society and the medical profession are quite prepared to turn a blind eye to these risks.
In my day, almost straight after giving birth, they gave you the talk about birth control and you left hospital clutching your newborn and a prescription for a BCP.
If they did a survey of all the women who have to give up work because the meno has hit them so hard I'm sure they might try to offer better treatment. The country needs women to be active, keep working and ultimately cost the NHS less in the long run. What does it cost the NHS to treat women for heart and disease and osteoporosis that develops later in life due to oestrogen deficiency?
The BC risk is still relatively small and in fact being on HRT does mean we are monitored better for blood pressure, breast screening etc. so things may be picked up earlier and treated more effectively. How many women opt out of screening and even going to the doctor on the basis that certain lumps, bumps, aches and pains simply have to be put with because it is part of ageing. My mother did not go to the GP about the awful vaginal/vulva pain she was getting for ages, she put up with this pain for months - when she finally went she was rushed to the specialist the same day as she had developed advanced stage vulva cancer!!!!!
DG x
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Hi Taz - sorry but if that was the case we'd see far more "early" years in teens and twenties of exposure to Estrogen.
The studies have shown that estrogen only HRT "Reduces" the risk of Breast Cancer.
:o
We wouldn't see it in early years due to the fact that it is the number of years we are exposed to oestrogen from what I've read? The body naturally decreases it's oestrogen supply over the years but we increase these years by supplying it with oestrogen for longer than it would naturally be exposed to it? That's how I understood it anyway. I realise this article is from a while ago now but it does mention the role that early onset of periods/late menopause can play http://www.ncbi.nlm.nih.gov/pmc/articles/PMC314432/
Of course lifestyle has a lot to do with it as well. My own doc suggested that when I began combi HRT I should stop drinking alcohol so as not to give the body a "double whammy". Then there's lack of exercise, obesity, smoking and genetic factors.
Taz x
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Maybe, but you still get Doctors & Nurses grizzling against long-term BCP use due to cancer risk...I've had it raised several times, and just hope I will be allowed to stay on it (or a suitable HRT alternative) until I'm 50. Every time I go in for my next prescription, I'm twitchy in case they decide I can't have it anymore.
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So if alcohol is so bad to have while on HRT, why is it not mentioned on the info sheet?
I don't drink on a daily or even a weekly basis, but I do occasionally have a few drinks on a night out, when I like to have a fun relaxed time? Am I now increasing the BC risk 'double whammy' at those times?
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Ljp - you're doing it again - don't see the scary stuff so readily. The occasional night on the tiles with a few drinks is not going to be bad - it's drinking a couple of large glasses of wine every day that will do the harm. DG x
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Sorry DG I genuinely never used to be like this, menopause has created an anxiety Minster in me, HRT has helped me control it, but at scary times like these, it rears its ugly head yet again and spirals out of control and makes me doubt myself and all decisions I have made 😟
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I have survived breast cancer and bizarrely my surgeon told me that although there are many 'risk factors' such as smoking & drinking etc. 60% of the women he sees do not have any of those factors at all! There are so many other things at play I say do what you think is best for you.
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Well I'm totally confused!
Some of the posts over the past 12 pages refer to oestrogen potentially being the culprit and yet the so called studies indicate progesterones as the problem. A couple of acquaintances who have had BC (they didn't have hrt) were specifically told it was an oestrogen driven type.
It's so good we have this forum to offload our feelings and worries. I must admit to looking in the mirror, following this report, at my boobs and wondering if I was doing them harm by taking hrt. However I recall my surgery nurse telling me some months ago that there are certain life styles that carry greater risks. I'm sure I've also read/ been told that BC that might come from hrt is treatable.
HRT for me!
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thats the trouble when something is as random as cancer - you can never figure out "random" in every study.
if they ran the studies 5 or 100's of times then they'd end up with 5 or 100's of end results - due to the "random" nature of how it starts.
one cell goes rogue and years later there is an issue - no matter how much lifestyle / living like a nun we do or dont do :)
take care of the moment :-*