Hello, I had my initial diagnosis in 2013 at 35 which was treated with surgery, chemo, rads and then Tamoxifen. I had a recurrence in 2015 treated with mastectomy followed with more chemo and put on Zoladex injections with Exemestane. 1 out of 8 nodes tested positive.
So initially the plan for the hormone therapy was 2 years, then 5 and then my oncologist thought it should be 10 years. I moved to a new area last year and my new oncologist has said I don’t have to continue with the Zoladex and Exemestane now I’ve reached the 5 year milestone. He has said that whilst the treatment is really good for first 2 years and then good for up to 5, there is little evidence it has much effect after this. He has said that the medication provides protection for a few years anyway and I should think about how the side effects etc impact my life as to what I choose to do. He has given me 3 options which he said is a good thing: 1) Continue as I am with the treatment for a further 5 years. 2) Stop for 2-3 years and if I want to return to medication, they could look at Tamoxifen. 3) Stop altogether.
At first I was quite concerned at getting different advice from my previous oncologist, but now I’m thinking it would be nice to stop and be free of achy joints, hot flushes, vaginal dryness and mood swings. I might start to finally feel like the old me after all these years, like a woman again, and the cancer won’t be controlling my life anymore! At the same time, it terrifies me that the cancer may come back. Its such a hard decision and I’m trying to compare the pros and cons. Everyone says its my decision but I’m so scared of making the wrong one!
Has anyone else had to make this sort of decision? I would like to try to find out more about whether there is research or evidence of the protection from the treatment - has anyone heard of this.
I am in a very similar situation to you. I am at 5 year mark, 2015 chemo, radio and mastectomy. Diagnosed 41 years, so slightly older than you. My decision has been forced by some thickened endometrium from tamoxifen. I’ve had 4 years of Zoladex and 5 years tamoxifen. I find myself now being in a position of having to make a choice which is very difficult. It has been suggested I could stop treatment, carry on with Zoladex with letrozole, orphrectomy with letrozole or continue tamoxifen with marina coil. I don want more surgery and like you said would not like to be without double whammy of side effects from Zoladex and letrozole. I feel so stuck. I did call the helpline which was helpful and have looked at lots of research, still can’t decide!! I might call BCN today. Have you had your bone density checked from Zoladex? I had a scan two years ago, but nothing since. This is a consideration too as Zoladex and AI can have an impact. You could have tamoxifen, which is an option and a lot of pre menopausal women have this alone.
Let me know how you get on with your decision making.
I am in the same position. I was on Anastrozole and after 5 years of struggling with it, I realised after reading the instructions in the box, the 20 symptoms I have been dealing with are side effects. I was suicidal on Boxing Day, and not much improved from then but seeing a therapist is sort of helping.
I got an appt with Oncology and was offered 6 week sabatical, then to be put on another 5yrs of Exemestane, which reading those side effects are not much different. I was told the molecular structure was different, and its possible I wont have them as severe. I have read that after 5yrs its something like 1% benefit, from 7 to 10 years is debateable if at all.
I am 56 and have felt crap for 5yrs, literally crap. I am not sure mentally I can cope another 5yrs, I left a job i had after 10yrs there, took a humongous pay drop because I simply could not think, my reactions were slow, my brain was spent. I am now in another role and making lots of mistakes, and struggling and this is the easiest job I have ever had!.. I genuinely do not know, like you what to decide. I know its likely I will panic not taking it or be of the mindset “what if”. That is wrong I do know that, but sat here typing I am struggling for words, to think and now not sleeping again.