Hi im meeting with Oncologist on Friday to discuss not continuing with hormone treatment. I had grade 2, stage 1 recurrence in mastectomy envelope, ER 8/8, PR 6/8 in reconstruction from 2004. Hysterectomy and oopharectomy in 2007 so surgical menopause at the time with no symptoms, luckily!
Ive had Anastrozole and Exemestane so far, both with unbearable side effects. The options I have now is change to Letrozole or Tamoxifen or stop the hormone blockers. Im not sure whether I should give the other 2 a go or just call it a day.
Im going to ask risk factors for stopping but is there anything else I should be asking? I know my situation is a little complicated and there aren’t many folk who have a 21 year recurrence but im wondering if anyone may be in a similar boat? Xx
@susynight my heart goes out to you, this is a time when we don’t know if were on our head or heels,
I really don’t know the answer, however thinking maybe give the other two a try you have nothing to loose, you can always stop taken the medication ( I stopped after 3.5 years and my cancer returned) however have been free for the passed 5 years without any medication.
Speak with your team, I’m so sorry I can’t be more positive, I feel sure you will make the right decision.
Im hoping they will explain the risks of stopping v keeping going. If I stop and it comes back again I’ll blame myself and if I cant function on the meds I’ll blame myself! Its a catch 22 usnt it! Xx
Hello I was diagnosed with IDC stage 2 breast cancer and had surgery end of May 2025, had the Oncotype DX test, and then radiation treatments. After the radiation treatment and waiting 30 days, I began taking Letrozole in October 2025. By Jan 1st, my side effects were unbearable for me. I met with my Oncologist and she suggested I take a break from Letrozole for 30 days and then suggested I try Exemestane ( which I see you were already on.) My oncologist said I could have different results…. I am hesitant to try another AI and am weighing “quality of life” versus risk of recurrence. For me, my initial symptoms were sore knees etc…by the end I could not walk up and downs stairs, sleep more than 2 hours at a time, cognitive issues, and hand, joint, and bone pain. Now being off of it for 50 days, some symptoms have stopped and others still persist. Each person may have different results, so, I am not sure that this information helps, As a side note, my Oncologist suggested I get the BCI test, but it only tells you risk of recurrence AFTER being on AI for 5/10 years. I was hoping there was a test for recurrence if you STOP the AI during the initial (1-5 years). Per the company who performs the BCI test, they are working on this type of test but there no date yet for when it could be on the market. Good luck at your appointment.
Thanks for reply. You seem to have similar symptoms to me. Ive been off them for 5 weeks now but symptoms are still persisting. Its all a bit of a minefield isnt it. X
