Hormone Therapy Fears

I am also more worried about hormone therapy than the cancer. I’m considering not taking the tablets. 
I’d like to know if you decide to go through with it or not and also hear from anyone else who has chosen not to take the tablets 

Hi Claire, I'm new here, was only diagnosed on Wednesday, but I also have Fibromyalgia and severe arthritis (waiting for a new hip) so i just wanted to reach out and say hi. My surgeon has put me on hormone tablets straight away but its too early to see if i have bad effects,, i'll keep you posted if it  ight help your decision?

Dee x

Hi Claire,

I had breast cancer 12 years ago and had lumpectomy, chemo and radio therapy.  I then was put on tamoxifen for 2 years and then changed to anastrazole which I was on for 3 years.  I really battled with the side effects and stopped taking the hormone tablets after 5 years, I should have been on these for ten years.  I do regret not carrying on with these tablets as I found out in September 24 that my cancer has now come back and is incurable.  I had to go back on these tablets but I told the oncologist about my side effects from before and he has put me on exemastane which I have minimal side effects from.  Maybe talk to your oncologist about different tablets.  I wish you luck with whatever decision you make.  Lee x

I also worried about HT and didn’t take them at all. Thankfully my team didn’t push the issue at all and accepted my decision. I do often wonder if I’m doing the right thing but the truth is I’ll probably never know, it’s all ifs buts and maybes predicting from statistics, you just need to be comfortable with whatever decision you make, for me it was more quality of life over quantity so I completely understand where you’re at. I’m almost 1 year from my diagnosis and I do wonder if I should have at least tried them but worried about permanent irreversible effects more. Many women don’t take them and never have a recurrence and similarly many women take them and do have a recurrence, equally the reverse is true. There are no guarantees either way sadly. It’s a very tough decision and statistics show it’s the best overall chance of survival to take them so it’s a difficult decision to argue with that. 

I wish you well on your progress and hope I haven’t muddied the waters for you but just wanted you to know your thoughts are valid and I appreciate it’s not easy, particularly on these threads, admitting you’re thinking of ‘disobeying’ the norm. 

I totally agree with you. It's all an unknown. Whatever decision we make we can't go back and do it the other way. 

I've had mastectomy,  lymph node clearance. No chemotherapy.  Hormone therapy,  tamoxifen.  They also wanted me to take zoladex which I have so far refused.  Radiotherapy starts soon and I feel it's alot for my body to take.

The side possible effects of everything is scary and a complete unknown until you take them. Also nothing is a guarantee.

It's such a hard decision to make.  

Update: I was offered Radiotherapy, Anastole and bisphosonates infusion. I declined the HT. They asked me why, I advised and they accepted without pushing. I then dropped the bomb and asked what additional benefit the HT added to my "low risk reoocurence" At 5 years survival rate it was 0.8% benefit and 10 years survival rate it was a benefit of 1.2% and at 15 years it was 1.8 benefit . So in my case, 55 years post menopause it didn't equate to enough benefit % for me to seriously consider affecting my quality of life with the side effects of HT. 

They did cancel my dexa scan and I asked for it back. They said I didn't need it, it is for HT treatment. I responded, you have taken me off HRT, surely we should check the conditions of my bones as you have already increased my risk of Osteoporosis. This withdrawel was part of the treatment package......they didn't agree