Menopause Matters Forum
General Discussion => New Members => Topic started by: Helenhelena on February 07, 2017, 01:01:24 PM
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Hi I have been finding this forum so useful for many months so thanks.
I started evorel patches in November aged 51. I decided to cut them in half to start due to advice on this forum.
And they were brilliant. I was sleeping better then I have for many years. The itching was reduced. And I had other unexpected effects like the minor anxiety I had had for many years disappeared. My awful creakiness went. I smelt better (I think). I just felt rejuvenated .
So all great . Then I had a letter re my first mammogram. And to cut a long story short I was after several biopsies found to have precancerous cells called lobular carcinoma in situ in one breast. I have an increased chance of developing breast cancer in the future.
The clinic I went to were great and did say they did not absolutely say to stop HRT but warned it may increase likelihood of getting cancer.
My feeling at present is to stick to the half patches. I just cant cope with 4 hours a sleep a night and with the unbearable itching. I have a further meeting in the clinic in May and to discuss it further then with them. I think I have picked up from here that patches are better than tablets as the estrogen is directly applied
My lifestyle is good -exercise and eat well. not overweight, hardly any alcohol. No history at all of breast cancer in family.
I do have a friend who had breast cancer after her first mammogram that is urging me to stop HRT as she says the discussions she had with her surgeon were extremely anti HRT and the effects of estrogen.
I find it a difficult situation but I just feel so good on HRT that I am reluctant to give it up.
Would appreciate any advise from folk who have been in similar positions :)
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:welcomemm: sorry about your news. Have you required any treatment? Quality of Life is important and I don't think that any risks about how HRT is delivered and the added risks have been thoroughly investigated.
You could send an e-mail to Dr Currie on here perhaps, details should be 'above'.
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I personally would wait to speak to someone in the know about such things. Like you I would be reluctant to go back to only a few hours sleep per night. However, specialist may be able to help with that aspect. I was always told that HRT was much safer transdermally. Of course nothing can be 100% safe. My GP agrees with me that quality of life is very important. Yours has been caught early.
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I can't really comment on HRT or breast cancer per se but I am currently receiving treatment for ovarian cancer and I'd say that while you are fit and healthy , it's easy to think quality of life is all that matters . You soon find you think very differently when faced with the possibility of it being cut short prematurely and your quality of life on chemo is pretty diminished. I can't help but think that given the chance to avoid cancer occurring, that I would take it - some aren't so easy to avoid or detect but you have had an early warning that your body is capable of cancerous changes and have been told you are at risk of a tumour proper starting. I understand your reluctance to give up HRT but I'd be inclined to have a trial and see how you get on off it - your own hormone levels may have settled sufficiently to make what symptoms are left more acceptable to you.
I don't know whether LCIS can be tested for hormone receptors which would give indictation of you needing to avoid hormone treatments - something to ask your team about? Xx
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All brilliant advice thanks
Have required no treatment.
I do totally take on board that I dont want to risk actual cancer if I dont have to.
My instinct was though that good sleep is important to my body and that it might actually balance out with a low rate of HRT so that I am not putting myself more at risk. But will ask at clinic :)
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Make a list to take with you, adding any suggestions on here? Let us know how you get on??
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Updating that clinic advised that better not to use HRT but not absolutely saying not to. I am still on half doses of Evorel Sequi. Am awaiting further information that a specialist has been asked to provide.
Meanwhile the clinic said to stay on the Evorel for as short a time as possible
So I would like to ask advice on what is best to do next.
I was previously having very bad itching that lessened but didn't absolutely go away on the Evorel. Suddenly it seems to have gone (thank goodness)
So is my body getting more used to the menopause?
When should I think about going onto the non progesterone Evorel -is there a specific age?
Is there an age where the sleep problems I was having (4 hours a night - tough)would lessen naturally.
With the proviso of staying on HRT for a short time -what age is it best to try to come off. I am 52 and 5 months.
Thanks for help so far
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Tnx for the update? Has anyone suggested mastectomy?
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You can read about it here CLKD http://www.cancerresearchuk.org/about-cancer/breast-cancer/stages-types-grades/types/lobular-carcinoma-in-situ-lcis
Hi HelenHelena
Taz x :welcomemm:
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Hi HelenaHelena
:welcomemm:
Sorry to hear about your lobular carcinoma and I can totally understand your dilemma.
Re the Evorel - if you have a uterus then you will always need to take some kind of progestogen. In the large WHI trial it was the progestogen component of the HRT that led to a greater risk of breast cancer although different type of oestrogen and progestogen were used in the study.
Some studies are showing that using natural (ie the same hormone our body makes) progesterone might associated with fewer breast changes than the synthetic ones so that is an option. However oral progesterone has to be taken in quite large doses to be effective (although can be used vaginally at lower doses).
As coldethyl says you should ask about whether if you were to develop cancer it would be oestrogen positive - in which case it would probably grow faster than if you were not taking HRT.
This is a very specialast area and I know very little about it but sounds like you are under specialist care.
You can reduce your risk of getting breast cancer through lifestyle measures although I don't know whether this is the case if the lobula carcinoma is already there. By these I mean keeping your weight within normal BMI limits and trying to reduce excess if necessary, taking lots of exercise, reducing alcohol to a minimum and eating an extremely healthy and varied diet with lots of fresh unprocessed foods and fruit and veg.
Re how long on HRT - women who reach early menopause are advised to take HRT at least until the natural average age of menopause of 51/52 (to protect heart and bones), but many women experience menopause later than this and so symptoms may not even start past this date. Depending on where you were (what your periods were doing, cycle length etc) before you started HRT - you may still have a few years to go before menopause - or you may have got there. Some women continue to have symptoms for several years even after menopause.
Sorry I can't comment on the sleep issue - for me because HRT stopped sweats and flushes - that enabled a better night's sleep.
I hope you manage to decide what to do for the best - to protect your health as well as quality of life.
Hurdity x
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I had a 'good' diet (when I was able to eat) so I don't consider that to be a factor in why I developed a lump which at histology was found to have changes at the outer edges. When I am not anorexic I eat well and usually make healthy choices.
Tnx Taz - Tamoxifen isn't without it's dangers i.e. cancer of the womb
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No advice to add HelenHelena but just wanted to pop by as you kindly posted on my thread.
I really hope you find a solution to all this - it's a proper "rock & hard place" situation for you isn't it.
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I think that Tamoxifem is not used so much now. Three of my friends who are in remission from breast cancer are on a different drug but I can't remember what it's called!
Taz x
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I think that Tamoxifem is not used so much now. Three of my friends who are in remission from breast cancer are on a different drug but I can't remember what it's called!
Taz x
Is it Letrozole Taz? My mum is taking it and is having some rotten side effects. Her Consultant wants her to continue but I'm starting to think at 85 that enjoying life is so much more important.
Sorry to hear your dilemma Helenhelena, what a difficult decision. Have you been able to discuss your options properly- my first thought was as CLKD wondered and whether you could have a mastectomy and keep using HRT?
Take care xx
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Tamoxifen still used in premeno women - they use Letrozole in post meno women- used to be 5 yrs but now 10yrs recommended for those with ER pos breast cancers.
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Thanks coldethyl.
She is on Arimidex and has had no side effects.
Taz x
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Salad - I had to stop tamoxifen - it almost killed me as I felt so ill. Not having felt ill nor suffered any physical pain during diagnosis and surgery, I decided to stop that drug. That was in 1996 ;-). Maybe your Mum could speak to her Oncologist and ask if it a) is necessary and b) if there is another med with less side effects. Quality of Life is important! Why did she undergo surgical intervention and what does she really feel about taking further medication?
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Hi CLKD, I so agree that quality of life is the key.
My mum had a successful breast cancer surgery in December with a diagnosis of it being Oestrogen sensitive and was subsequently started on Letrozole. Since then she's had thinning hair, poor appetite, abdominal pain/nausea, joint/muscle pain, dizziness/losing her balance and the most troublesome to her, low mood and anxiety.
She is now on medication to try and help with the anxiety and is taking pain killers but she's so reluctant to go out anywhere and gets lonely at home.
We saw her Consultant this week. I had printed out information from a cancer specialist website about the Letrozole side effects to discuss with mum and she did talk to him about them. I also said how she did not have the same quality of life at the moment. He did acknowledge the tablets cause most of those symptoms but he was adamant he wanted her to take the Letrozole. And my mum will only do what the doctor tells her, especially as some of her anxiety is focused on the cancer coming back.
I will follow up on your suggestion though and try and find out whether there is a different tablet, until then I guess that I'll try to be supportive :-X
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That seems harsh attitude from consultant- If I read it correctly, your mum is 85 so surely quality of life is more important at that age- could understand if she were 35 - she is more likely to die of something else now than a secondary cancer I'd think. I understand her panic about recurrence as I was treat for ovarian cancer last year/this Spring and it never leaves you- I receive counselling via the NHS chronic illness support team and it has been useful- there are also lots of online support networks though I appreciate at 85 she may not be techno savvy or interested in that route.
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aged 85 - AgeUK have people in some areas that are matched to anyone housebound who would welcome a visit, i.e. if you like gardening/knitting/fishing ....... or do ask your Consultant's Dept. if there is a dedicated Breast Care Nurse who could phone/visit with your Mum once a week. I was offered another patient to chat with but that didn't suit me. It's when I was discharged from radiation treatment and between consultations that I felt adrift ::). The structure and support were gone for a while.
Esther Ranzen started a group too for isolated people who can contact by phone I think : "Silver something"?
Is there a Church/Chapel group you could approach for your Mum? Mothers Union? Do you belong to any groups where someone would go along to chat with your Mum, what interests has she had over the years? Is there a reading group she would join in with, even if it's for company? Crosswords keep me busy when I am able to concentrate, or a pile of magazines to flip through.
You could ask a local Pharmacist what else is available similar to what the Consultant has prescribed so that you could maybe ring his Secretary to compare notes?
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Really appreciate your input coldethyl and CLKD- a lot to think about :thankyou:
I felt the Consultant was focused on doing his job of treating the cancer and preventing a recurrence, but he missed the point of her just being able to enjoy living her life.
I've just got her to apply for Community transport which will ferry her to local shops and nearby towns as she is not wanting to drive very far now- and hopefully she might meet some new people on there.
She nearly went to a local lunch club but avoided going after saying she wasn't keen on spending her time with old people ;D
Lovely ideas CLKD - I will research the Esther Rantzen group. Her hobbies revolved around dance (she only gave up line dancing this time last year). There seems to be a fair bit she could do locally it's just her not being 'bothered' to do anything- guess that's related to the low mood/anxiety.
Thanks again- it helps just unloading on here :)
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She may well be in shock too! It can take a while to come through symptoms, diagnosis and treatment. Could some of her 'friends' from the line-dancing visit her at home? Maybe they don't like to make the initial move?
Let us know! :bighug:
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Just an update for you who kindly posted before.
I researched on american websites - useful sometimes and found out that this cancer does react to oestrogen. So I did come off HRT under doctor guidance. We never got a clear answer from hospital.
And then the good news is that I had my first annual mammogram in December and it was clear. So feeling good for the present.
I am a bit fed up having come off the HRT. Have bad itching again and joint pain and didnt feel myself for a couple of months.
But feeling a bit better now . And will research on here how to deal with the symptoms in non HRT ways.
Thanks lovely people!
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Tnx for the update! What did your Dr. suggest regarding alternative treatments to ease symptoms as much as possible?
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Hi I was waiting for my body to settle before going to ask. So far its mainly the itching which has been mad again. Ive been just trying to put a lot of oil on and keep skin really lubricated during winter and its' associated central heating.
The joint pain has also come back but comes and goes
Reluctant just to go for itching for the moment. Will wait another couple of months to see if settles better