Given all the comments about menopause, I thought I might add my twopenneth as well as a few words about me as it has been a while before contributed to these threads. I think I last posted last October?
Anyway, about me -
Diagnosed July 2023 with a 50mm grade 3 IDC ER+, no lymph involvement or spread, thankfully. Opted for a single mastectomy, no reconstruction as I did not want additional surgery or scarring, and implants weren't for me. Plan was mastectomy, radio (due to size of tumour), and tissue sent to be sent for oncotyping. Oncoptype score high, and confirmed chemotherapy needed, and around this time I discovered that I have not one but two BCRA mutations - BRCA 1 and BRCA 2 - which rather threw the MDT as Bart's as they had never seen this before. When I met my oncologist, his first words that t'hey would have thought with my genes, I would have triple negative', to which I quipped 'there's still time'. At that point, I very much wanted to wait and see rather than start cutting off and out my other breast, ovaries and fallopian tubes.
Completed eight cycles of ACT - four doxorubicin - four docetaxel a little over a month ago. Tolerated the red devil surprisingly well, more so as I refused steroids after the first cycle as they made me so so manic. It was terrifying, and not something I wanted to repeat. That said, the final cycle made me so unwell, I spent all of Christmas on the bathroom floor. Regrettably, from the outset, docetaxel made me horrifically sick, but as a result, scored the fabulous (if slightly scary) anti-nausea meds Levompemazine which meant I pretty much slept through the final cycles. However, am still horrendously tried, yet struggle to fall asleep, bones and joints ache, terrible pins and needles in my hands and various other unwanted side effects of chemo. Am due to start five sessions of accelerated radiotherapy next week after which I have to tell my team that I am refusing endocrine treatment.
And that takes me back to menopause. I went through premature ovarian failure in my late 30s which triggered an early menopause. Yet, due to my age, my GP refused to send me to the menopause clinic even though I had told him about my family history of breast, ovarian and pancreatic cancer, and that my first breast consultant I had seen at 15 years old had told me he suspected I was oestrogen dominant and should never take oestrogen-based contraception. I had every symptom going and pretty much suicidal that no-one would listen. My quality of life was non-existent. Finally, a different GP prescribed me HRT - everol sequi - which I knew wasn't right as all my symptoms got one hundred percent worse during the oestrogen phase of the patch. Again, I asked to be referred to the menopause clinic and was refused. Eventually, I threw my savings at the problem and went to see a private specialist. And guess what? She told me I did not need oestrogen, just lots of progesterone. And she was right, my symptoms abated within days. HRT saved my life, not to mention my sanity. When my hormones shifts again, we needed to add both testosterone and oestrogen into the mix, along with vagifem). Due to my concern with oestrogen, I took the barest minimum, and every other day at that.
I was absolutely gutted finding out I had a hormone positive BC 8 ER/5 PR as I knew I would have to stop HRT. My MDT never ordered me to stop, they only suggested I consider it, which I did, more or less immediately. My GP put me on a v. low dose of prozac to regulate my mood, something HRT had been marvellous for, and to try to stave of the hot flushes returning. At one point, I was having hundreds of hot flushes a day and had to change my clothing several time. For a time, this worked well. Even though chemo brain plus meno brain was a real challenge, the insomnia did not return, nor did the hot flushes, sweats or anything else really. That said, I do think not having hair did help keep me cool while I slept. Ha! But now I am post chemo, the hot flushes are starting again - am sweating profusely as I type this even though the widows are open and am sitting here in my underwear. My bones, particularly in my legs and knee joints are so painful, some days I have to climb the stairs on my hands and knees and the pain keeps me awake. Each day is a reminder of how much I love love loved HRT and how much I miss it. I can't be dealing with this getting worse. It's already as bad as it was when I first dealt with menopause. I just don't want to start ET for it to get worse, only to have to stop taking it in x years time and for the cancer to return. Also, with my genes, I have been told I'll probably get triple negative anyway, and/or ovarian, pancreatic or well, pretty much any cancer full stop. They have decided my double BCRA is a positively welcoming environment for cancer full stop. But that said, even with two BCRA mutations, I might not get any of these cancers either. And hey, could get hit by a bus tomorrow anyway.
So, what to do?
Initially, I was very much of the opinion that I would rather wait and see what happens, particularly with my remaining breast. I last had a lump in it thirty years ago. However, having been through chemo, gosh, it has made me think differently, and have decided on a second mastectomy which I hope to have once I finish radio. Am still determined to refuse ET due to menopause symptoms, particularly bone loss and osteoporosis - am still under 50. Am due to see gynae oncology this week who want me to remove my ovaries and fallopian tubes, something I don't want to do because again, am concerned about the consequences. Mania was also something I struggled with during perimenopause, and why I refused steroids because having to deal with it again would have pushed me over the edge. Having been through a debilitating menopause once that robbed me of almost three years of my life, and made me consider taking my own life several times, I am more concerned about quality of my life, not quantity. Going forward, I have to live in this body post cancer. I do not want to be miserable.
So yes, solidarity and sympathies with all on here, not just those with cancer which is shitty enough, but having to deal with menopause, be it due to chemo or surgery. It's fucking shit.
Eeek, sorry for the essay, typos too - chemo has fucked my eyesight, pins and needles in the fingers make it difficult to type and chemo/meno brain is still plaguing me!