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[CLKD]

What did we say B4 'catch 22' was written 

But how dangerous is HRT in reality against 'that bus' appearing ?  . why won't Consultants get together with ladies after surgery to discuss?  Probably because oncologists have NO idea how awful menopause symptoms can be?

[Wrensong]

But how dangerous is HRT in reality against 'that bus' appearing ?

  I wish I could answer that CLKD - none of us knows what's around the corner & we can only take what feels the right decision for us at the time & this is a very difficult one for any woman after BC.

why won't Consultants get together with ladies after surgery to discuss?

If the patient wishes & her symptoms are bad enough to seriously affect her quality of life, sometimes the MDT - consisting of those clinicians involved in her care e.g. Breast Surgeons, Oncologists - will discuss whether it's reasonable for HRT to be prescribed, providing the patient is fully informed about & accepts the related risks.  But if the need for HRT arises years down the line, after the patient has been discharged, then the team of medics originally involved in her care may no longer all still work together & it may be more difficult for their successors to make a confident decision if all they have to go on is medical records, rather than first hand knowledge of all the detail of that patient's circumstances. 

You could well be right that some Oncologists' decisions may be affected by their having no idea how bad menopause can be, but those involved in breast treatment do come up against this situation & some of them are open to the idea that HRT is sometimes something their patient really needs to take a chance on. Their approval will also depend on the circumstances I think we talked about in Nas's original thread - the nature of that patient's particular cancer, past treatment etc.

It is a horrible situation for any woman to be in & can be a huge worry.  I do hope Nas can get the expert help she needs, that her symptoms can be managed one way or another so she can get on with her life all these years on & not have this hanging over her.

[CLKD]

Maybe 'they' should listen to the patient?  Surely the further down the line the less chance of HRT triggering cancer and would it be the 'same' cancer ?  Another Research Grant may be ;-).  But it seems from what ladies say on here that they get a straight 'no', use anti-depressant medication, 'not open for discussion' 

[Wrensong]

Agreed CLKD, it's very important that the patient's needs be considered. 

I'm sorry I can't answer your question about likelihood of recurrence long after initial treatment.  In answer to your other question, it is possible for a new primary cancer to develop & women who have had an incidence already are considered at increased risk of this.

In Nas's earlier thread on this topic some weeks ago, Hurdity posted a link to The British Menopause Socy . . .

https://thebms.org.uk/publications/consensus-statements/the-diagnosis-of-the-menopause-and-management-of-oestrogen-de%EF%AC%81ciency-symptoms-and-arthralgia-in-women-treated-for-breast-cancer/

the relevant para of which says:-

"Lifestyle measures and non-hormonal interventions should be first-line management for estrogen deficiency symptoms but if these are ineffective systemic hormone replacement therapy or low-dose topical estrogen may be considered but only after taking specialist advice."

Nas, a charity called Breast Cancer Care has a forum where the topic of HRT after breast cancer has been discussed if you'd find it helpful to speak to women in a similar position.
Wx

[LuLu71]

HI Nas,

I've just read through all of your posts in this thread and so sorry that you are still suffering and not getting the help you need. I can't imagine how exhausted you must feel with everything.

I'm not living in the UK but am wondering if you can ask your GP to put a rush on a referral to a menopause clinic you mentioned in your recent post? Hopefully if you explain at length how you've been trying to deal with this with the oncologist he/she spoke to and all of the symptoms you are having and that the antidepressant isn't what you want, the GP can step up and put a rush on a referral? Sorry you are going through this and I really hope you get the right treatment soon.

[CLKD]

" .......... but if these are ineffective systemic hormone replacement therapy or low-dose topical estrogen may be considered but only after taking specialist advice."


I haven't seen anyone here being offered HRT after treatment for breast disease  .  The last words my oncologist said to me was "No HRT for your my Lady" and fortunately, I haven't required anything other than for VA. 

[Nas]

Hi all,
I just want to say thanks once again, for listening and sharing your thoughts 

The subject of HRT for the medics, is indeed an ethical dilemma, but unfortunately I cannot see beyond my debilitating symptoms and would rather have my quality of life NOW, than look at the bigger picture of the 'what ifs' later on.  I am sure there are many ladies in the world, who would not even be considering HRT in my position. However, when you are driving down a dual carriageway and are panicking and sweating, forgetting basic information, trying to learn a new job (got another new job for September, which will be demanding) trying to run a home and raise pre teen and teen kids; all whilst experiencing these godforsaken symptoms (which many of you know so well) it isn't easy! Then the carrot gets dangled and I am being told no no and more no. I feel angry and frustrated. But oncology remind me that I will be even more angry, if the cancer returns. It may return anyway, or I may have an accident on the road, due to lack of sleep whilst experiencing panic attacks, all because of the menopause! They haven't considered that have they, when they speak of ethics and moral codes of doing no harm!!!

The GP with whom oncology spoke with on Monday, has now gone on holiday and has left the task of sharing the outcome with me,  to another GP. I no doubt will have to chase that up next week! The private GP who saw me in April seems to have forgotten that I have asked for a private prescription (if she is willing) and I now need to get myself referred to a meno clinic (I am thinking the Chelsea and Westminster hospital). If they dare say no, I will scream!

Lulu, yes I am exhausted. What was the point of surviving the cancer, if this is the life I am condemed to for who knows how long?
As if losing the breast, hair, surgery, more surgery, chemo and more surgery, wasn't enough? Now they want me to suffer some more!


Nas, a charity called Breast Cancer Care has a forum where the topic of HRT after breast cancer has been discussed if you'd find it helpful to speak to women in a similar position.
Wx

Wren, yes I did use the BCC forum a few years back, I will return to see how other ladies have coped in this situation.

But if the need for HRT arises years down the line, after the patient has been discharged, then the team of medics originally involved in her care may no longer all still work together & it may be more difficult for their successors to make a confident decision if all they have to go on is medical records, rather than first hand knowledge of all the detail of that patient's circumstances. 

This is indeed what has happened, ten years down the line.

CLKD, Wren -  thank you so much for your valuable contributions. I shall keep on battling as I do not want to take anti D's. I want my depeleting hormones replaced.

Bye for now
Nas

[CLKD]

One shouldn't have to battle though ....... I've thought about this topic a lot in the last 24 hours.  Time medics came up with some actual facts about the actual risks ?

 

I was talking to a lady of 89 last week and she had breast disease in her 50s treated successfully; lumpectomy and chemo.; - it's returned in the last 6 months ... she never had HRT but it's returned, well they tell her 'it' but I do wonder if the same cancer would return after all that time? 

[Nas]

Indeed, we should not have to battle through I agree.

If 'it' returned, it may be a new primary in the other breast, or secondary in an organ?
The GP is of the opinion that once diagnosed, you are never cured. Instead, the cells lie dormant, until it they decide to re ignite. I disagree. I believe I am cancer free right now and at the same point as any woman who has never experienced breast disease. Annual mammograms confirm this. Therefore why is HRT a 'risk'. As you say CLKD, until they start doing some hard accurate research into this, it will remain a dilemma for them. I was told that the cancer would return within 5 years.Did they have a crystal ball?? I had small children at that time. A decade on and I remain cancer free. I want HRT because by their reckoning, I should probaby be dead now anyway! 

[CLKD]

5 years is the 'magic' time?  Probably backed by Research.

Tamoxifen made me ill.  Almost killed me and did encourage cancer of the womb from which my friend died  .  She had taken it for 15 years, stopped for 5 then re-started when she had further breast problems.  Followed by womb cancer.

Quality of Life.  Would men put up with symptoms?  We get all the adverts about prostate cancer on TV right now but nowt about HRT v breast disease 

Why would cells lie dormant?  That's the whole point of intensive, invasive treatments, surely?  Otherwise why offer chemo and/or radiation?  My Surgeon and Oncologist told me that as the lymph glands were clean radiation treatment would zap any left over cells in the breast.  I also had annual mammos but wasn't told that there was probably more risk of those triggering recurrence or poisoning me  .  I stopped annual mammos after 15 years ......... still here.

[Nas]

They recommend tamoxifen for ten years now. I stopped at 3 years. Also didn't agree with me.

Men wouldn't put up with this. There isn't enough being said publicly about HRT and breast disease. Only a few women bring it up in the telegraph or mail occasionally  on the whole, its a quiet topic. Well I want to bring it out in the open, I'm a working mother and I want my quality of life. I don't want to be zombiefued by anti d's!! I'm not having it.

So battle on i will. My thinking is though,they by the time they have made a decision, I will either have had an accident on the road or the meno will be Over! If the former, I will hold them responsible and they will be negligent!

[LuLu71]

Hi Nas,

Thanks for sharing all of what you're going through and up against. Again, how exhausting and frustrating this must be you. Have you looked into other alternatives, besides antidepressants? Above this forum, under Treatments, there is a description about phyto-estrogens and other types of therapies. Are there specialists in naturopathy in the UK that you can connect with ou'for a consultation? Just a thought and perhaps you've already tried this route.

I hope they connect you with that meno clinic, and fast...please keep me posted. I hope you get a nice rest tonight.

[Wrensong]

Hi Nas,
You said "There isn't enough being said publicly about HRT and breast disease"  (sorry can't get the quote function to work properly today).

When I saw your comment (& I completely agree), it reminded me of the dismay I felt during the recent BBC breakfast coverage of menopause, at the unfairness of the situation for women needing HRT after BC.  Generally I thought the programmes were very valuable, but there was a comment from one contributing medic who simply said something like we don't give HRT to ladies who have had breast cancer, but most women can safely take it.  Given 1 in 8 of us will develop breast cancer at some point in our lives I felt that was dismissive of the potential needs of quite a large number of women.  It is also not strictly true.  Some women are prescribed HRT after breast cancer depending on their circumstances.  They may have covered HRT after BC in another broadcast in the menopause series as I didn't see them all, but that rather sweeping statement got to me.

If you are in Cheshire, Chelsea & Westminster is a long haul for you & if an NHS referral, there may be a long waiting list, but have you thought of approaching the Newson Clinic in Stratford on Avon?  Again, not that close to you, but closer than London & it's private, so I know that may mean it's beyond your means, but I can recommend a doctor there via PM if you'd like me to.  I never identify medics on the open forum for confidentiality reasons, but would be happy to give you a name privately if it helps.  Alternatively, to prevent you wasting money if they cannot help in your circumstances - you could perhaps ring or email to get their view before making an appointment if somehow you can get the cash together.  Just a thought.
Wx

[CLKD]

Girls  we are a Mine of Info. 
 
But Tamoxifen can cause womb cancer  ...... my Surgeon at the time told me that 'none of my ladies have developed it'. 

I thought of this thread a lot in the early hours 

[Wrensong]

So did I CLKD - the issue is really emotive.
Wx