I was dx with tn grade 3 idc in Oct 2014 aged 41. I underwent wle and anc, followed by 6 cycles of fec-t & then 15 radiotherapy sesions as part of the Import High Trial. Towards the end of my chemo, my oncologist recommended that I take tamoxifen as my er status was 3/8 (so very mildly reactive). I was happy to take anything if it helped to keep the bugger away!!
I’ve had genetic testing as I lost my Mum & Nan to BC & two of my Mum’s sisters have also had BC…but it came back negative or BRAC1 & 2 to my surprise…although we’re still classed as a high risk family.
My periods stopped during chemo but then returned a year later. I’ve had gynae investigations (hysteroscopy, endometrial biopsy) which were all normal.
When I saw my onc in March I mentioned this to him (had been done via BCN & GP). He gave me three options…
stay on tamoxifen & review in 5 years
monthly zoladex injections for 5 years then review
refer to gynae for removal of ovaries
My periods have been playing silly buggers since they came back 4 months ago & I’m thinking that maybe I should just bite the bullet and have my ovaries out. I’m lucky in that I’ve completed my family…in fact they could take the whole lot out.
I’m just a bit hesitant of the side effects of doing this…although I have read that chemo can cause a menopause 5-10 years early anyway even if your periods do return.
Can anyone enlighten me if they’ve chosen to have ovaries removed…how was it, what side effects are the most common etc.
I was dx Jan 2015 at 41, had wle + anc followed by 16 of chemo + 20 RTs. Also put on Tamoxifen as er & pr status was 8/8. Periods came back in Dec but I decided to have ovaries out instead of Zoladex as I’ve had enough of side effects from meds and like you had completed my family.
So now I’m going through menopause for the 2nd time and have stopped taking Tamoxifen for 2 months to let hand rash caused by Tamoxifen to settle before going on Letrozole.
I didn’t want to take another med (Zoladex) with it’s potential side effects and contra effects with Tamoxifen. Also having the ovaries removed gave me peace of mind re ovarian cancer and irregular periods and pms.
The keyhole op itself was very straigh forward, only had discomfort for the first few days and then back to normal exercise within 2 weeks. I’ve since started taking sage tablets as a natural approach to settle hot flushes and it’s been even more effective than I expected.
Having ovaries out has worked for me but you need to decide what’s best for you. Good luck with the decision x
Hi…thanks for that info. I’m leaning towards removing them but just trying to assess the side effects…but I guess everything has those!!
Think I’ll ask to be referred to gynae
Thank you x
Thanks for replying. I’ve been on tamoxifen for a year and my periods have returned. Hot flushes don’t particularly bother me…but feeling crap for half the month because of hormones does!!
Just reread my post…i was dx Oct 14…stupid autocorrect!!
Hi bevrog I’m in a similar position to you. Dx sept 14, 2x Idc, er + 8/8, 26 lymph nodes +. I had mx with implant recon, chemo, rads, further recon. Started tamoxifen in June 15. Periods stopped a month after I started chemo and returned last week. I had a 5 week break from tamoxifen for surgery and felt so much better without it. Tried it again for a week and felt so bad onc agreed I could stop.
So onc has suggested zoladex but with another drug too - an AI. I’m seeing gynae next week to discuss ovary removal or hysterectomy vs zoladex. It will be interesting to compare notes. I think onc is keen for me to try drugs first as you can always stop but can’t reverse ovary removal!
Hi. Did you decide which option to take? I was supposed to start tamoxifen but they think I might be too high risk for thrombosis as I have an unrelated condition. The alternative offered was zoladex and anastrozole but I am not at all keen on the potential side effects (which I had to look up as no one told me much, they said it is because there is no other option! As if that matters, I still need to know what might happen especially for the common effects).
I have thought that having my remaining ovary removed might be a reasonable solution and just have anastrozole rather than the combination but they don’t seem keen. I know that it is irreversible and would instantly start menopause symptoms but it wouldn’t have the other potential side effects.
Hi. I had endometrial cancer 5 years ago and had a total hystectomy (including ovaries) to reduce risk of BC. Sadly (just 3 months before 5 year discharge) I was diagnosed with BC. An aunt and my Mum also have had BC. Both thankfully still here 30 years on, although not BRCA in family. I continued to check boobs after hysterectomy but it was a routine mammogram that found the little b*****! I’m sure I would make the same choice again but don’t want anyone else to be as complacent as I was that losing the ovaries meant no risk. I also had horrible and immediate menopause! Xx
Hi. Thank you for your reply. I don’t think that I will be complacent and I know that having my ovaries removed wouldn’t stop me getting BC again but it seemed a more palatable option than the zoladex to me. I expect both will give me the horrible and immediate menopause that you had.
I am continuing to check the other side as mine didn’t show on the mammogram xx
Hi Rosebud. I think the most eye opening thing for me has been the wealth of information and support on here and it feels like there was such a gap in this last time for me, other than a very strange American site. I now think I imagined the conversation that said removal of ovaries would prevent!! It frightens me how I managed not to feel the lump I had, given the size it turned out to be. I’m hoping my 2nd menopause isn’t as difficult but ready to grit teeth - and buy a new chillow! Anastrazole on the cards for me too. Hugs xx
Hi Janey, we can compare notes. I am going to try the combination treatment and see how I get on since it isn’t permanent. Having to go through it all again a few years after stopping the treatment is also not appealing.
I looked at chillows but they had sold out, I will have to look again.
Hugs xx