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. 😞
Sorry to hear that the call to the BCN was not helpful. I really know what you mean about knowing who to trust about the information and advice you are given. Have you tried to call the helpline from this website? My situation was similar in that there is not any evidence to back up my treatment plan. My oncologist did write to me after our telephone consultation(because of Covid). He explained that he had examined the research himself and also explained that he is treating women in my situation in the same way. I did find this helpful. I understand now that this is experimental treatment, with possible risks, but have decided to trust in his plan. If you do not have that trust you could ask for another opinion. I think this is fair enough, with such a big decision.
I will continue with listening to my own body and will ask for my plan to be reviewed if there are unmanageable side effects. You know your body best, giving yourself a break from treatment to weigh everything up is also always an option.
Hope you're doing ok.
I decided to contact the BCNs to ask about the research behind the carry over protection from Zoladex and Exemestane which the Oncologist had said about. I've been very much leaning towards coming off them because of what he said.
However, he told the BCN that there have been no trials regarding the meds I'm on and the evidence is based on trials regarding the long term use of Tamoxifen. This has completely thrown me as he has basically told me something thats not true.
I really don't know what to do and am not sure who to trust. Its stressing me out trying to make the right decision. I'm feeling very lost at the moment.
Thanks so much for posting Emma
You are so right. It is very strange that we find ourselves in this position when for the last 5 years all decisions have been made for us. I am so thankful, as I am sure you are of getting this far and being able to make a decision for myself, but it does not make it easier. I did speak to the BCN and she did say tamoxifen and mirena was ok. It appears this is a very new treatment option and the oncologist was clear there was a “theoretical” risk of recurrence. I suppose that this is the issue for me that each decision carries a potential risk. However, a bit like you mentioned I am deciding on a keeping my options open decision. I am going to have the tamoxifen and coil fitted. I will give this 6 months and then request blood test to check my menopausal status, you cannot do this on xoladex. If still pre- o will carry on but if post, then I can just have letrozole. I will also request another scan after stopping the Zoladex.
I think making a decision for now is the main thing for me, so I feel I can get on with things. I am then going to see how this goes and re-visit as and when I need.
Good luck with it all.
Let me know how you get on.
Thanks for your reply. It does sound very similar to my predicament and I'm sure like me you're just really stuck as to what to do.
I've been having bone scans every 2 years and they found I already had osteopenia after my first one. Unfortunately, osteoporosis runs in my family - both my Nan and my Mum have it - but I'm not sure if its because of the genes or my treatment or both. I'm on Adcal for additional calcium plus Alendronic Acid to try to reverse the effects and it has improved. It is another good reason to stop the hormone treatment as the oncologist said it should get better.
You should definitely have another bone scan if your last one was 2 years ago - the oncologist or your GP should be able to organise this.
My oncologist said about the possibility of returning to Tamoxifen in a few years if I want to after having a break from my current treatment, but I'm worried as my recurrence happened whilst I was taking it. Though I guess it could have been bad luck as the tumour was around the scar area of the original lump.
I am leaning towards coming off the Zoladex and Exemestane but want to try and find some evidence of the carry over effects and protection that the oncologist mentioned. I may try and ask the BCN team about it. Did you get any more info from your BCN?
It feels weird to have got to this point of the long winding cancer journey where the majority of decisions were made for you and now you have to make one yourself. Its the thought of getting it wrong and what could potentially happen that is making it so hard. Only time will tell...
Hope you're ok
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.
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.
Thanks for any help or advice.