Hormone Replacement for Surgical Menopause

[Doggies221]

Hi dear ladies, have any of you used HRT to cope with the horrors of surgical menopause resulting from OC treatment, if that diagnosis happened to you prior to natural menopause? I find that there’s no discussion or warning about the effects of surgical menopause prior to treatment and that no one seems to care if a premenopausal woman is thrown into menopause prematurely and about the effects that living without hormones may have on her overall health and functioning through the rest of her life. Then, one is left to figure it out on their own. Of course, there should be more support to OC survivors facing this problem (maybe not many survivors are in this situation🤷‍♀️), but it seems like there isn’t any advice or support in this regard.

Taking HRT and topical estrogen is one way to partially regain lost functions as a result of surgical menopause and to prevent a host of other health problems that arise from living with 0 hormones (I think I read that the immune system is also supported by hormones so I’m thinking it’s healthy to be hormonally balanced), so wanted to see if any of you have sought and used HRT, what kind (I’ve been hearing a lot about bio-identical hormones), did it improve your life? Were your oncologists ok with the use? Seems like there’s only a few studies on HRT and OC, but they did not find any ill effects from the use of HRT. Do you happen to have any advice on this issue? Thank you so much!

P.S. did some research and here seems to be the official recommendation: pubmed.ncbi.nlm.nih.gov/320...

[Marieck]

I take hrt through small stickers my doctor prescribed. Five weeks after my surgery hot flashes were horrible it helped a lot I also couldn’t sleep and that improved unfortunately everything is still very dry and that has not changed I was also very worried about this and felt the doctor didn’t seem to be concerned enough when I brought it up. I had t see another doctor for the hrt treatment hope that helps

[Doggies221 in reply to Marieck]

Thank you so much for sharing your experience w HRT! Do you mind sharing if your C was ER positive and what histology (what kind), just trying to see if diff types of OC have different considerations when it comes to HRT. Regarding the dryness, I think vaginal estrogen cream and supposedly moisturizers help, but the problems are very real:(. It’s sad surgeons are not concerned about any of these problems when they decide to remove organs that are unaffected by C🙁.

[Marieck in reply to Doggies221]

It was clear cell and not hormone reactive

[Doggies221 in reply to Marieck]

Thank you! I don’t know if hormone reactive = estrogen receptor positive or if one can have ER positive but not hormone reactive 🤷‍♀️.

[AnaJim]

Hi Doggies221,

My Oncologist organised an appointment with the Menopause Clinic at my local hospital where I saw a specialist to discuss my options.

I am not taking HRT because it wasn’t recommended for my particular circumstances but I have been coping through lifestyle changes: physical activity, healthier diet and stress management (difficult at times!) I have hot flushes but not too frequently, sleep is ok but dryness and lost of libido are definitely an issue. However, it is not too bad overall.

I guess it is all quite individual at the end of the day and we have to do what it feels right for our personal situation.

Best wishes in your journey

Anax

[Doggies221 in reply to AnaJim]

Thank you so much AnaJim. It’s great your oncologist at least cared about your QOL after treatment to send you to the menopause clinic bc none of my treating doctors cared about these problems I’m experiencing as a result of the treatment. I searched for a clinic myself and will be seeing a regular gynecologist there in a few months. In addition to hot flashes, dryness, lack of libido (lack of feeling feminine as a result of all these losses), I’ve gained a bit of weight despite eating extremely healthy and exercising (the menopause belly), have lack of energy, suffer from fatigue and lack of mental focus and sharpness. I’m sure that all these symptoms are from lack of hormones in my body so I know I need to figure this hormonal problem out. Even testerone balancing might help, even if ER per se is “viewed” as a little risky cancer-wise. There should be more on HRT and gynecologic cancers out there :(.

[Colyn]

Completely agree with you and currently in battle with my oncologist about this as he even admits it’s not his area of specialism and that he will simply pass me on to a colleague (to try and fix the mess)

My situation is a bit different as I am currently monitored for a BOT, so just saying I agree with you!

[Doggies221 in reply to Colyn]

Yes, Colyn. To me, that lack of discussion and caring about the effect of aggressive surgeries has been more shocking than the cancer diagnosis itself. I can’t understand why the medical profession would do this to women and then leave them to figure out how to live w all these problems and changes to their bodies. There is not much caring or whole person approach to women’s health. Regarding BOT, I thought that a woman would not need to remove organs w a BOT… thank you for replying and keep pushing the doctors w questions.

[tealblue1]

Hello, have you checked the type of cancer you had. I was not recommended HRT as it could prompt a recurrence especially if your cancer was hormone based. I was put on clonidine as this was safer. Definitely agree surgical menopause is horrible and hit me like a train. I struggled with hot flushes, insomnia, dryness, brain fog and it drove me mad. The oncologist did try to help with this new medication but it takes a couple of months to kick in. I feel things are improving a bit. The nurses are very kind and you could talk to them if you have no joy. I was warned about the surgical menopause but nothing prepares you for it when it hits you like this. I really hope you find some help and I wish you all the best.😍x

[Doggies221 in reply to tealblue1]

Thank you so much tealblue1. I’ll research clonidine. I tested the tumor. It’s clear cell staining for ER positive, PR negative. Supposedly, CC is ER negative and PR negative in most instances. So is it “hormonally driven”? It’s not known to be hormonally driven, yet the ER stains for positivity, not all cells of course. I don’t know where this leaves me w HRT and the docs don’t know either. What I’m struggling with is the realization that there are consequences to living w no hormones beyond the annoying menopausal symptoms. It’s not making sense to me that a body that’s supposed to have optimal immune system in order to take the hits of treatment and fight a disease is being handicapped by depriving it from its fuel - hormones. Premature meno has been proven to cause bone loss, cognitive dysfunction (that’s all we need now after having been battered by the surgeries and chemo), heart problems, depression, increases the risks of dementia and Parkinson’s, and the immune system is also influenced by hormones. So I’m struggling with weighing the certainty of the negative effects of hormone deprivation on overall health with the uncertainty of the effect of hormones on cancer. You’d think the certainty would outweigh the uncertainty, yet fear (ie the uncertainty) usually wins as the most powerful human emotion, even if irrationally.

[tealblue1 in reply to Doggies221]

Hiya. I also had clear cell and was told it was linked to endometrioses and so was hormone based. The clonidine is often prescribed for blood pressure but can be used to help with hot flushes etc... I totally agree there is so little info out there even and nobody talks about the long term effects. I take multi vitamins and supposedly immune support tablets but I don't know if it helps - your right the uncertainty is the hardest thing to deal with. Glad your getting to see a gynaecologist - keep asking questions and pestering there is help out there.🙏😀x

[SopSinger]

Ask for referral to a menopause clinic - they are the real experts and will tailor the treatment to you. They are few and far between, so you may have to travel (in my case it was one 80-mile round trip to Oxford and all follow-up has been done by phone, so not too bad). I had horrendous symptoms and my surgeon was in the "let's see how you get on" camp, but I went to my GP and she spoke to my oncologist and between them they agreed that quality of life was necessary too. (This was 2006 before tumours were routinely tested for oestrogen receptor status.) I tried oral HRT but symptoms came back when I tapered it off. Now on a low dose patch which menopause clinic is happy for me to stay on for life.

[Doggies221 in reply to SopSinger]

Thank you so much! It sounds like you’ve been successfully using HRT for many years, SopSinger. Do you mind if I ask you if the tumor in your case was non-serous? Apparently, advice differs based on tumor histology and apparently the receptor status does not indicate whether a tumor is estrogen dependent. Which really presents a lot of uncertainty for rare tumors. There is a study out there that in non-serous tumors, HRT increased disease free survival. How funny (or sad) is it that some doctors are afraid of HRT when studies show it helps some people. I understand it may hurt others. Individualized medicine is not often practiced but so necessary in the case of the different types of OC.

[SopSinger in reply to Doggies221]

Mine was mixed clear cell and endometrioid and I have Lynch syndrome, which also appears to improve survival.

[Doggies221 in reply to SopSinger]

Thank you for sharing SopSinger. I’m assuming it was an ER positive tumor and you still went for HRT (good for you!). The real kicker regarding the HRT decision is a clear cell that’s ER positive (in most instances they are not) given that clear cell is known as a hormonally independent tumor, which should mean HRT is ok. Also, regarding endometriosis, the HRT question is also murky in that folks have wondered whether HRT causes endo to recur post menopause. Several studies have found it doesn’t and it doesn’t increase risk of malignant transformation so different guidelines recommend that women w prior endometriosis take combined HRT (estrogen and progesterone), which in my mind is more natural anyway. I wish that after OC treatment, medicine took patients by the hand and said let’s balance you out hormonally now so your body functions in an optimal way (I guess that’s too much to want out of medicine where every treatment is in a vacuum🤷‍♀️). When thyroid is taken out due to cancer, people are surely put on thyroid supplements. That is not done w women launched into premature menopause. None of my doctors either warned me about the effects coming nor referred me to any clinic to manage these effects and the effects of hormone deprivation on overall health. It’s been an amazing situation and I’m angry on behalf of all women treated like this.

[OvacomeSupport Partner My Ovacome Team]

Hi there Doggies 221

Thank you for your post. I can see you've had lots of replies from the forum community who have shared their experiences. I hope you've found this useful.

I just wanted to share this Ovacome information booklet about surgical menopause that may be of interest to you: ovacome.org.uk/surgical-men... . This has a section all about HRT and a webinar recording with Dr Louise Newson, GP and menopause specialist.

Your oncologist should be able to provide you with some personalised guidance about whether HRT is suitable for you and may be able to refer you to a menopause specialist in your area. The Ovacome support team is here to help you plan or prepare for any future conversations with your clinical team, if you think this could be useful?

Please don't hesitate to get in touch if you would like to talk things through or if there's any further information we may be able to provide. You can message us here on the forum, email [e-mail] or give us a call on 0800 008 7054. We're here Monday - Friday, 10am - 5pm.

Best wishes

Annie - Ovacome Support

[Doggies221]

Thank you so much, Ovacome is so helpful and we all appreciate all the support you give to patients.

[Mund2121]

I am on HRT following surgical menopause. Assumed I couldn’t take it due to a diagnosis of mucinous borderline ovarian cancer, saw my gyno/ oncologist who suggested it, highly recommended it and educated me on some of the issues surrounding HRT. I use the gel which is said to be safer than the tablet form . Had 10 months of a horrendous surgical menopause, started HRT the day after my appointment and have never looked back.

[Doggies221]

Thank you so much for sharing! I so want that gel :). The trouble is the fear with a tumor that expresses the estrogen receptor. Maybe yours didn’t express it or the doctor just didn’t think it was important?

[Mund2121 in reply to Doggies221]

My tumour was not ER positive .