Has anyone here decided not to take Tamoxifen? If everything I've been through, this is the part that I have found the most terrifying. I can't even look at the packet without crying. Since they told me I would have to take them I have felt like my life was over, like I would never feel normal or happy again. It's only since I've considered not taking them at all that I've felt a glimmer of hope.
Some background info on me - I'm 37, diagnosed with ER+ (8/8) PR+ (8/8) HER2 - BC last August. I had mastitis after the birth of my first child and breastfeeding was going badly when I felt a lump. The lump I felt was actually a milk cyst, the cancer was behind it. 27mm Grade 2 tumour, clear margins, 1 macromet and 1 micromet in sentinel nodes so they removed the rest and found nothing in any of them. CT scan of organs clear and bone scan clear. I had 4xEC and 4xpaclitaxel chemo, then 10x radiotherapy.
My mum had ER+ breast cancer at 37 as well, treated with surgery, chemo and radiotherapy. She never took Tamoxifen as her oncologist didn't recommend it but she can't remember why that was. It hasn't, touch wood, returned and it's been over 30 years. We have had genetic testing and it seems it's just bad luck not genetics.
I was extremely depressed when I was pregnant because of hormones. Any hormonal birth control I've ever briefly taken has made me anxious and depressed. I have a tendency towards negative thinking and have suffered from eating disorders/orthorexia and body dysmorphia regarding my stomach. I just know that Tamoxifen will undo all the work I have done to overcome my eating/body image issues and low mood. I am not willing to take anti depressants again as they make me gain weight and trigger the eating issues - I have a daughter now and I do not want to pass this nonsense on to her. I also don't want her growing up with a moody, miserable mum. Exercise is really important to me and I was out on my bike or running throughout chemo and radio - if Tamoxifen robs me of that it'll have a dramatic impact on my quality of life, it'll stop me doing all the things I love.
I just want to go back to normal. I don't want a daily reminder of cancer, I don't want the side effects, I don't want the fear and guilt and tears I just want to move on and live my life and be a good mother and wife and friend. No one can tell me the actual benefits for me and I can't find the data I want anywhere. It's all very well saying "x% reduction in risk" but x% of what?! A 50% reduction of a 100% chance the cancer will come back is worth having, a 50% reduction of a 1% chance isn't (in my opinion). The predict tool shows a 3% benefit, but, again, what's that based on? How old were the women in the study? What chemo did they have? How active are they? I'm not a risk taker in life usually, I prefer to make decisions based on data but the data I want isn't out there and I think I would rather take the unquantifiable increase in risk over the definite significant reduction in my quality of life and impact on my (already shaky) mental health. I am very active, I eat well, I drink significantly less alcohol now than I used to before I had my daughter and I plan to cut it down even more. Surely that gives me some protection as well?
That was a long post, sorry! I guess what I'm asking is - has anyone else wrestled with this, did you decide to refuse them and are you happy with that decision?
