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[Punkaninny]

I hope this post isn't too redundant, but I couldn't find any posts that fit the criteria for my situation. I'm 36 yo, and had a bilateral salpingoophrectomy in late March, due to BRCA status. Essentially, I've been told since I was 25 that I needed to get that procedure, or I would almost certainly get ovarian cancer. I had triple negative breast cancer at 25, underwent chemo and surgery (double mastectomy and reconstructive surgery), and have been cancer free since 2015. Because of my prior cancer, I have been unable to get HRT, no doctor I've talked to will consider it. I was under the impression that a double mastectomy minimized the risk of a recurrence of breast cancer, so I don't understand why I can't get HRT. Not only that, but my cancer was triple negative, which means not hormone sensitive! I know it's a long shot but I am desperate for a solution, my life has fallen apart since I started menopause. Especially my marriage. My husband doesn't seem to understand why I don't want to be physical, and his idea of being supportive means only asking for physical intimacy every 2 weeks. To be clear, not only do I have zero interest in sex, but it's extremely painful now, even though I try to mitigate the problem with adequate lubrication and everything. Can anyone help me? Advice? Resources to show my husband to help him understand? Research about HRT that I can show a doctor to support the use of HRT? Anything would be appreciated. Also worth mentioning, I live in a relatively small town, 3+ hours away from any major city, so my access to doctors is limited.

Thanks for the time and support!

[bombsh3ll]

That is scandalous leaving a 36 year old with no ovarian hormones.

Please don't let this go, you have to fight for your future health as well as your quality of life.

Your oncology team were happy to let you have natural ovarian hormones all those years without any concern about breast cancer recurrence, so to deny you hormone therapy is illogical as well as being beyond cruel.

I am a non carrier within a BRCA family and was lucky enough to get risk reducing mastectomies based on family history alone before the availability of genetic testing so this is something I have a keen interest in.

I didn't find out my status until I was 34, but whilst I'd had to fight tooth and nail throughout my 20's to get my breasts removed, I was also casually offered BSO without even asking for it (I declined this).

The culture of being so resistant to removing a threat to a woman's life that only affects appearance yet so cavalier about leaving young women without ovarian hormones, which is unseen but life destroying, is extremely damaging and I am sickened that this is still happening to BRCA women in 2024.

Double mastectomies reduce the risk to as close to zero as it can possibly be, and the fact that you are so far out from your original diagnosis makes the development of metastatic disease extremely unlikely.

Please if you can, scrape the money together and get an appointment with Louise Newson or one of her colleagues - I believe you can do this via video consultation but even if not, travelling to her clinic is well worth it in your situation - and get the treatment you need so that you can be comfortable and well whilst you fight the battle with the NHS which may be long and arduous but which I am certain you will win in the end.

The doctors there will help you fight your case with letters and documentation.

It is completely unethical that you are being denied the autonomy to make your own informed decision regarding your treatment.

[Gnatty]

Totally agree with all of the above. Even women that have had oestrogen positive breast cancer are given vaginal oestrogen these days.

[CLKD]

U R in the right place!   

Quality of Life is important which many surgeons don't understand.  Treated, out the door, out of mind.   I use the analogy that a bus might creep up behind me B4 any problems of disease occur! 

U have had the preventative surgical interventions that you require to avoid future disease.  I agree with the  suggestion by bombsh311 - contact Dr Newson, explain your story as you have to us and ask for advice.

In recent years there's been more leaning to allowing women to begin HRT to ease symptoms.  Vaginal atrophy treatments are totally different in that the absorption is much less so using prescribed treatments are important.  Do read the bladder issues and vaginal atrophy threads on the Forum, make notes ;-)

When I developed VA symptoms in 2001 [?] my GP didn't hesitate in prescribing treatment, my breast treatment was in 1995 [?] .  I can now manage symptoms with 'estriol' inserted into the vagina.

Let us know how you get on.  U may be able to see Dr Newson privately for proper advice and any treatment can be transferred to your GP/Nurse Practitioner.  All is not lost!

[Punkaninny]

bombsh3l:

 Thanks so much for your response. I suppose I should have mentioned that I am located in California, not the UK. But knowing that Dr Newson is out there, and presumably on my side, is helpful. Even if I can't see her, maybe she knows of a  like-minded peer closer to home who I can see! I'll definitely be looking into it.

And everyone else who has responded, thanks as well to you all, if I don't manage to reply individually to you all, I truly appreciate the support and input!

[CLKD]

Don't worry about replying to us individually.

Let us know how you get on. 

[bombsh3ll]

Sorry I assumed you were in the UK.

There is a doctor called Corinne Menn in the US who has made a number of videos on YouTube and works with a company called Alloy.

She is also a survivor of young breast cancer and takes hormone therapy.

I am not sure which state she is in but if she can't help you directly she may be able to recommend someone who will be willing to treat you.

Also, don't just settle for vaginal estrogen - whilst this is a start, at 36 you really, really need systemic estrogen to protect your bones, cardiovascular system, brain etc. as well as your quality of life.

Early loss of ovarian hormones has a much more profound negative impact on women's life expectancy than breast cancer, so please fight as hard and as long as you need to for this.

I don't know if you've already looked into them but there are also some online communities specifically for individuals with BRCA and other hereditary breast and ovarian cancer risk genes which may also be able to provide practical support in obtaining treatment.

[Ayesha]

This link should help you it has a section on Breast cancer and GSM (Vaginal Atrophy) and is headed by Dr Louise Newson and referenced by many eminent people in the same field. Knowledge really is power here!

https://bssm.org.uk/wp-content/uploads/2023/02/GSM-BSSM.pdf

[pepperminty]

Hi,

It should not be a blanket NO! It is about balancing risk and benefit with HRT. You should be able to use vaginal estrogen at the least. Please look up Louise Newson's site . She has lots of pod casts around Breast cancer and HRT. There are leaflets also.

https://www.balance-menopause.com/menopause-library/

Just click pod cast and and select breast cancer and have a listen . If you have no life at the moment due to lack of estrogen then you should at least be able to have a conversation with an INFORMED health cares specialist - so many aren't.
If you read up and get informed then you will be empowered and you should be part of the decision making process.

Let us know how you get on.

PMxx

[Punkaninny]

I'll look into a way to see the Dr Corinne Menn that you mentioned, I actually tried to use Alloy already and was turned away, but they offered me the topical gel. Unfortunately they didn't accept my insurance and it was outrageously expensive out of pocket. I'll message the Dr I have on their platform and name drop dr Menn, see what happens!

[joziel]

OMG that is awful!!

I can't believe they just left you with no HRT. If you don't have any breasts or ovaries, surely your risk of cancer is basically as low as anyone else's now?! (HRT or not!)

I would suggest you look at the Balance Menopause website (which is Dr Newson's) and read articles there.

And then I would suggest you use the US telemed providers called 'Defy' or 'Elevate'. They are the most forwards-thinking providers of HRT in the US. They are your equivalent of Dr Newson...(!). And you can access them from most states. And know that, because you are quite young still, you might need much higher dosages of hormones than many older women do.

I can't believe you haven't even been given any LOCAL estrogen cream or pessaries for the vagina?? There is tons of research that isn't absorbed systemically... Look up Dr Kelly Casperson on Instagram too. She is US based.

[Punkaninny]

I was offered a topical estrogen gel for vaginal application but I couldn't afford it out of pocket and they didn't take my insurance. I will end up paying for it, if I can't get anything else, but I was waiting, in the hopes of a better offer. If I have to spend a small fortune on for relief, I want to be sure that it's the best option I can get, ya know?

I reached out to my provider at Alloy (she prescribed the topical treatment) and reiterated my opinion that my extremely low risk of recurrence shouldn't be grounds to refuse to let me choose HRT. I offered to share my research, if necessary, and cited Dr Newson's work.  I also mentioned Dr Menn, hoping that I can get her to weigh in on the matter, since she is part of the Alloy team.

I am waiting for responses from Defy, Elevate, and one other online platform. And today I'm going to be placing calls to my gynecological surgeon (told me post op to talk to my oncologist regarding HRT), my oncologist (who doesn't work with HRT at all), intending to ask if a colleague at her facility was able to provide HRT or a referral, and I can go to my primary care doctor's urgent care clinic to ask for a referral if I hit a wall everywhere else (I have an  appointment on the books but it's not until Dec 2.)

Wish me luck everyone!

I'm gonna make another post, because I have a separate question and don't want it to get overlooked in this thread, so I will be checking back later hoping for some advice there too, if you don't mind my neediness. I'm ever so grateful for you all!

[bombsh3ll]

If it were me, and I had made an informed decision to take estrogen many years out from an ER negative cancer that had been definitively treated, and I was 36 years old with NO OVARIES, and I couldn't get any doctor to help me, I'd go somewhere they didn't have my records and not disclose the cancer.

I'm not saying that's what you should do, but it's what I would do.

I'm a non carrier within a BRCA family and I certainly don't disclose how many affected relatives (7) I have when I get my birth control pill, or that I've had risk reducing surgery.

Also you could look into Dr Avrum Bluming. He is another US doctor advocating for breast cancer survivors to have estrogen should they wish. He wrote a book called Estrogen matters, and also treated his wife with estrogen after her breast cancer diagnosis.

[Nas]

It’s a tough one Punkaninny.
I've had primary breast cancer and had to fight tooth and nail to get HRT prescribed ( at the lowest dose) from a private MS in the UK.

Then womb cancer arrived last year and at the same time, secondary breast cancer. I have no ovaries and one natural breast. My HRT was instantly withdrawn as oestrogen feeds my current cancer. I’m also on hormone blockers to block any remaining oestrogen made in my body.

Incidentally, my primary BC was 15 years ago and treated brutally, with a mastectomy, chemotherapy and 5 years of hormone therapy. It still returned.

At 53, I feel angry and bitter that like you, I am made to suffer ( in my case obviously, I am at the mercy of the disease now) But you at 36 and need oestrogen ( we all do!) and you should be able to get HRT from somewhere. Don’t suffer. Life is too short. Research and find a prescriber who understands quality of life and the need to have a libido!

Good luck 🤞