Hi I’ve been diagnosed with triple negative breast cancer, genetic test normal. I’m nearly at the end of my treatment. I’ve had chemotherapy, immunotherapy, right mastectomy followed by radiotherapy and more immunotherapy. I’m now trying to think of the future. I’m going to go ahead with a mastectomy on the left side, risk reducing surgery but also been thinking about having a hysterectomy. I’m now 43 and I wasn’t menopausal prior to starting chemo. I was wondering if anybody else is going through/thinking about the same things or has anybody else been through it and how are you feeling following the hysterectomy and what’s your thoughts?
Hi @cwtch I’m at the end of chemotherapy and radiotherapy for ER+, PR+, HER2 low IDC. My genetic testing was also normal but I have a strong family history. I saw the gynae consultant about having my ovaries and tubes removed early January and subsequently I am having a total hysterectomy as well. I was peri-menopausal before my treatment (I turned 49 in December) but have since started Zoladex so that I can take Exemestane and Ribociclib, so now post menopausal. I’m having my hysterectomy on 18th Feb and apart from the short term surgery and recovery, I can’t wait to just get on with it. It was actually the consultant who suggested the hysterectomy - we discussed the pros and cons and I decided to go ahead.
I can’t really offer any advice apart from get your oncologist to write to the Gynaecologist requesting an appointment to discuss further xx
Hello. I’m 56 and was diagnosed with tnbc in 2021, found to be BRCA2. Had chemo then double mastectomy, one risk reducing. Easy decision for me and no regrets. In 2022 had salpingo oophorectomy ovaries removed, again risk reducing. Was already in perimenopause and was quite happy with my decision. Was advised against full hysterectomy as no reason to remove healthy uterus etc. Told having it all removed could cause other issues with nothing to keep bladder etc in place. Op was straightforward and recovery quick. 2 weeks after my op the effects started. Now everyone is different and not everyone gets the same symptoms. I was already suffering hot flushes which started with chemo in 2021 and I still have now. My worst side effect was anxiety and dark thoughts. Went through a really tough time and my saviour was a lady care magnet. I was offered medication as in anti depressant but felt it wasn’t for me. My oncologist did say I could have systemic hrt as the cancer had been triple negative. Felt though that systemic could be risky so went with accupuncture for hot flushes to help calm them. Issiva rejuvenator, dilators and Estriol cream for vaginal symptoms which basically dries and tightens making sex a no go. Testosterone for energy and libido. Matcha for brain fog
It’s been a long and bumpy road, lots of trial and error, picking the brains of GPs, consultants, friends, online forums because I wasn’t prepared to go hrt.
I am feeling like me again.
It’s a huge decision bigger than I expected, I feel I took it quite easily. Yes take my ovaries so I can be confident I’ve done everything to reduce my risk of ovarian cancer. Would I change my decision knowing what I know now? Some days I think the answer would be yes but in reality I do think it’s the right one for me.
My two closest friends have both had double mastectomies and elective hysterectomy’s because they have the BRCA1 gene.
One has had breast cancer twice but the other none.
They have both been fine since surgery. One was able to take HRT but the other one isn’t but she has managed admirably.
For them, having both surgeries took away the worry. They were both under 50 at the time.
I had a hysterectomy at 42 due to endometriosis (my mother and sister were in their 30’s) and there have been no problems whatsoever. There’s a 3 month recovery time if you have open surgery but they can do it without that these days which is incredible.
I hope you’re doing okay, there is plenty of support here from some very knowledgeable people.
Did you and your friends have a full hysterectomy? If so have you had any problems following it?
My genetic testing was negative but I have a strong family history of ovarian cancer and with now having breast cancer even though not hormone fed I am anxious about everything and knowing what to do for the best.
@cwtch Yes, we all had a total abdominal hysterectomy with a bi-lateral salpingo oophorectomy! Try saying that after a glass of wine.
I had HRT patches from the outset but they have now been stopped with my breast cancer diagnosis outstanding. I won’t go back to them again.
My one friend has HRT cream which she loves and the other wears light tops and takes lots of supplements!
None of us have had any issues apart from flushes which are more of a nuisance than anything else.
All of the females in my one friends family have the BRCA1 gene and they have all had elective mastectomies and hysterectomy’s when they are done having children.
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