I wonder if others in my position would mind helping me…?
I was 45 and pre menopausal when I had chemotherapy (EC-T) earlier this year. My periods stopped after chemo 1 and I’ve had hot flushes and other menopausal symptoms. I’ve had surgery and radiotherapy and my oncologist has told me that from my oestrogen levels I’m now post menopausal and so am starting aromatase inhibitors rather than tamoxifen. I’m worried that my ovaries could kick start again and me not know, and the aromatase inhibitor not be able to deal with it! The oncologist says very unlikely at my age, and the nurse on the BCC helpline said the same but suggested I might get some reassurance (or not!) by posting on here.
So, has anybody else had a chemotherapy induced menopause and started straight into AIs rather than tamoxifen. Has anybody else had their periods stop and have symptoms of the menopause and then them restart further down the line?
Thanks.
Hi blue
i had one period 6 months after chemo then they stopped for good.
i was premenopausal before the nightmare began.
i was told it’s tamoxifen for two years for people in our situ then AIs
funny how the protocol is different in every trust.
if you’re not happy see your gp & request tamoxifen to start with
xx
Thanks Bibi.
I think it is partly because other people are being treated differently to me at different trusts that is adding to my worry about it all.
I was originally supposed to have tamoxifen but read that there is an increased benefit from having ovarian suppression and then aromatase inhibitors and bisphoshonates (SOFT/TEXT trials) so I actually went with the intention of asking for that! So, I’m happy to have the AIs, but worry that I’m not truly post menopausal and should be having ovarian suppression anyway!
Yeah it’s all such a worry isn’t it? Difficult to know what to do for the best isn’t it. I think if you’re getting on ok with AIs stick with that because you would end up on them anyway. You could always ask your GP to check your hormone levels which will show if your ovaries are active or not. They produce other things as well as oestrogen e.g. DHEA. Obvs oestrogen should be low because of AI, but they could test for other stuff. Take care xx
Hi blue, I’m pretty similar to you (47 at diagnosis, now 50) periods stopped during chemo, I’ve had a bit of spotting once or twice a year since. I originally went on tamoxifen but side effects were horrible so swapped onto AI, side effects even worse. I now don’t take anything (since July 2016) and so far no periods. I had a blood test last week and hope the results will confirm. My onc said that they class you as post menopause when you’ve gone 2 years without periods. My spotting is so rare I actually cannot remember when the last was!
Thanks for the replies. Just to update you, and anyone else searching for similar information in the future, I recently saw another oncologist who has advised regular blood tests for oestrogen levels for the next year or so, bringing me to 2 years without a period and post menopausal as although very rare, it is possible for ladies in my situation to return to their pre menopausal status. Makes sense and reassures me too!
Another update for anyone searching the forum for similar information… It seems I have reverted to being pre menopausal!
My last screening blood test was in February and I was definitely still post menopausal in that test.
I’ve had some symptoms of oestrogen in my body for the last month but just thought I was finally recovering from the last year and benefitting from the yoga and swimming I was doing, lol, however my hot flushes stopped last week so I had my bloods done and my ovaries are functioning again. I haven’t had a period.
Not sure how I will be managed treatment wise yet, but just for information, I was advised it could happen but there was a very slim chance. And yes, it does happen!
Hi Blie2. It’s Starfire from the January Chemo thread. Thanks for finding me. Just for the record I was far from the menopause before chemo and my last period was during my second chemo. My menopausal symptoms such as hot flushes, chills vaginal atrophy started during my 4th and last round of chemo. I was started on Tamoxifen which gave me horrible side effects, dizzy, numbness and sensory changes etc so I stopped after 3 weeks. Went to see my consultant who suggested the blood test to see if I could have Zolodex injections instead of returning to Tamoxifen as my side effects had improved since stopping. He was very surprised to see that my bloods score 66 as opposed to 700 plus when you are premenopausal. I am now POST MENOPAUSAL and soon to start on Anatrozole. He said it is very rare for periods to return like 1%. Any advice on the side effects if Anatrozole please xxxx
Hi Starfire, yes, you sound just like me! Completely and happily pre menopausal before diagnosis, 1 period just before 2nd chemo, flushes and ALL the symptoms you describe arrived after chemo 3/4. I asked about zoladex after finishing all my active treatment and that was why I had my bloods tested. My oestrodial was less than 35, so I was also most definitely post menopausal. I even got a second opinion about my management as you can see from the thread. Anyway, roll onto April and after feeling different (atrophy improvement was actually my first symptom that things were changing), I requested bloods and my oestrodial was 700+! On anastrazole! It is extremely unusual to return to premenopausal at my age - I didn’t know the percentages - but I wanted you to know it can and does happen and to put it in your mind to be vigilant about any change in symptoms! I’m currently on zoladex and tamoxifen since April, and will change to exemestane once my ovaries finally give up! Anastrazole was ok. I did have bone and joint pain and limitations to my movement, but on tamoxifen, I’m exhausted! I can’t even drive home from work I’m so tired. So, they all have effects - it’s just finding the best way to manage them. Good luck!