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[MadameOvary]

Hi
I have a BRCA gene mutation and I'm likely to be having a risk reducing BSO soon.

I'm 49 and already on HRT (Mirena and patch) which works well for me. GP wants me to come off HRT because of BRCA. I've been referred to menopause clinic but won't be seen for months.

Everything I can find about BSO and BRCA suggests I can take HRT until 51 than I'll have to come off it. I'm terrified of being plunged into surgical menopause in a couple of years' time.

Is anyone else in this situation? Has anyone with BRCA gene managed to stay on HRT beyond 51?

I just can't imagine going from steady estrogen dose to zero estrogen. I went on HRT because I found perimenopause so hard. I'm so scared it will be taken away from me.

[CLKD]

Morning.  R U able to take a cancellation if some1 no longer wants the appt at the Clinic, this may get you seen quicker. MayB ring to C if they have the facility?

What is the GP judging his idea upon that you should stop HRT ?  Quality of Life is imnportant.  Why the magic 51 cut - off?

Hopefully some1 will be along with advice.  This is of course your decision at the end of the day, sometimes it depends on how worried a lady might be regarding the risks. 

[MadameOvary]

Thanks. That's a good idea about cancellations. I'll try calling the clinic tomorrow.
The 51 cut off is mentioned in a few places including RCOG guidance on HRT and surgical menopause. I think the idea is that women should have hormones replaced until natural menopause age (around 51)and then it's no longer safe. But I don’t know of there's any evidence that it's not safe or if they just don't know and would rather err on the side of caution.

[CLKD]

Which would U rather err on?  4 me it's feeling well for as long as possible regardless of 'what if'.  If HRT is so dangerous then various operations should be offered in order to avoid cancer, i.e. bilateral mastectomy.  Would U B prepared to be followed up which ever route you choose as part of a Study? 

What family history would implicate future problems if U continued with an HRT regime?

[MadameOvary]

Bilateral mastectomy (and reconstruction) is one of the options. It's offered as a preventative treatment to women with BRCA gene. I might go down that route but I'm really scared about it.
I suspect if I did have a mastectomy it would be easier to advocate to stay on HRT beyond 51. So that's something to consider

[CLKD]

I think it depends on what relationship you have with your breasts.  It's difficult when our bodies are well to take preventative measures.  Hopefully any1 who has taken these steps will be along.

[MadameOvary]

Thanks. Yes, it's such a difficult decision when you're healthy. People say it's a million times better doing it as a preventative measure, rather than waiting until you have to do it because you've got cancer. But it's still a very difficult decision. Surgery on a healthy body doesn't compute!

[CLKD]

Leaving well alone springs to mind!  Do U feel rushed into making a decision?

[MadameOvary]

No, not really. I feel I might be rushed on my ovaries because I'm having a few gynae issues so I think they'll be keen to just do the surgery ASAP.
Things take a long time on the NHS though so I think I could be on a waiting list for a mastectomy for years while I try to decide.

[bombsh3ll]

I'm a non carrier within a BRCA 2 family, however prior to the availability of gene testing I was lucky enough to be able to have my cancerbags removed prophylactically at 29, which I fought tooth and nail for, and which really is a much less invasive or risky operation than BSO, as it doesn't involve opening up a body cavity or any endocrine consequences.

I was offered BSO as well which I declined as I didn't want to enter menopause and could reduce my risk of that by half by taking the combined pill continuously for the next 20 years and I pay for private ovarian screening.

I have continued both of these measures despite learning my status, as a negative test doesn't erase the psychological trauma of having watched it rip through your family.

However if I were your age, and known to be positive, also as I believe the ovarian risk is higher in BRCA 1 than 2, I would go ahead with that.

But I would say to anyone having that surgery who doesn't actually have cancer, do not sign the consent form unless and until you have a prescription for estrogen in your possession.

There is no argument for denying a previvor estrogen - with breasts your risk is extremely high anyway, and the additional risk of hormone therapy a drop in the ocean, and without breasts your risk is close to zero, much less than the average woman.

[CLKD]

  bombsh311

[MadameOvary]

Thanks bombsh3ll. Sorry to hear you've had to deal with BRCA in your family. I feel the same about not wanting to agree to the surgery until I've got a cast iron guarantee that I can have HRT for as long as I want it!

[bombsh3ll]

I don't know if you have been on any of the forums for BRCA and other hereditary breast/ovarian cancers but it does seem to be quite a big problem, particularly for younger women going into surgical menopause without being properly made aware by their clinician about the endocrine consequences, then finding out after the fact when suffering devastating symptoms that nobody is willing to treat their menopause.

There's just an attitude of well if you aren't having any/more children you don't need your ovaries.

I was offered BSO without even asking for it, and I also have a problem with how hard women have to fight for mastectomy, which has no negative long term health consequences, but are castrated as if it is trivial, presumably because one affects the male gaze and the other (without replacement) destroys a woman's quality of life, shortens her life but doesn't immediately alter her appearance.

[MadameOvary]

Yes I'm in a few brca groups. It was actually on one of those groups that someone suggested I post here with my question about HRT.
A lot of the women I've met in brca forums are younger and either haven't had a BSO yet or have no issues taking HRT because the guidelines say it's fine until 51.
I feel there's a lot of focus on mastectomy, rather than BSO but maybe that's because it's mainly younger women.

[bombsh3ll]

I think anyone telling you that you "have to" come off HRT is practicing in the last century.

Thankfully many clinicians are moving away from such a paternalistic stance and thinking more about patient autonomy and shared decision making, particularly in view of the complete lack of evidence that hormone therapy makes one iota of difference to someone with an 80% lifetime risk of developing it anyway.

I had already decided prior to genetic testing that I was going to be on estrogen for the rest of my life, but I do think that being breast free makes that a lot easier, and probably also makes it easier to argue for ongoing hormone therapy if you have negligible breast tissue left.

As well as just the peace of mind that risk reducing surgeries provide, it really did feel like having a death sentence lifted, plus never having to have mammograms!