Hi 6 years ago at the age of 38 I had a lumpectomy, 8x chemo and 25x radiotherapy followed by 5years of tamoxifen … It appears that my periods are back ?.
I am concerned as my cancer was hormone fed … Feeling anxious.
Appreciate any information especially from anyone similar situation but further along than me? Thankyou x
Hi YoungTL
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Hello,
I was a bit older than you, 44 at diagnosis. My periods returned at 50 after five years tamoxifen (yes, 50! how could that be?). I think it was my hormones having a last blast, as I had four periods over 12 months then nothing since (I’m now 53).
When I was finishing tamoxifen (late 2012) the research had recently been published that 10 years tamoxifen was better than 5. It was clear from this forum that oncs around the country were telling their patients they would have 10 years of tamoxifen. When I saw my onc she said she followed NICE guidelines and until such time as they were updated she wasn’t changing her treatment, ie I was stopping at five. Part of me was very relieved - I had been desperate for the hot flushes to stop, and part of me was worried it would come back.
Then in 2013 my friend died of BC. She was triple negative, so no tamoxifen for her, but I kept on coming back to the same thought - what would she say to me if she knew I wasn’t doing everything I could to stop the BC come back? I am sure she would have done anything to stay with her family, her youngest was only 12 when she died. So eventually I went back to my GP last year (I had read here that the guidelines were due to be updated in 2014), he wrote to the consultant, who took months to reply, with the result that I finally restarted tamoxifen in August last year, 21 months after I had previously stopped.
So now I have peace of mind - I am doing all I can. I am not taking it for a further five years, just the balance of the five years, ie I will stop 10 years after I first started. Interestingly the hot flushes aren’t as bad second time around. I wonder if this is because I went through the real menopause in my tamoxifen gap? As opposed to a chemically induced one on chemo?
Thanks for your reply I have just had a meeting with my consultant and oncologist and have been offered tamoxifen for another 5 years … This terrifies me as it was hard to take and took a while to settle into all the pain hot flushes etc… Plus 4 months before I finished tamoxifen I had started having periods as my body was “finding a way” ???
I really did not want this to be my only other option as I feel in 5 years I will be in same situation at 49 ?
I am going to try and find a group of younger women who are further on than me to put my mind at rest
Thanks for your input xx
Thankyou for replies it has taken me a while to understand how to work this site from my iPhone x