Hello all. Just wondering if anybody with ER + tumours decided NOT to take Tamoxifen? I had 2 lumps removed , both HER2+ , one with low percent ER+ . Taxol only chemo and herceptin for 1 year but Tamoxifen also prescribed. I took it for 2 months and didn't like the side effects so have stopped and will rethink after I finish Herceptin. Onc and surgeon leaving decision up to me but would welcome your thoughts. Thanks :) I can't seem to get this put in the treatment category? Oh well , I hope someone sees it

Hi @poodlejules, I know how you feel. I've already written quite a bit about giving up Tamoxifen. I gave it a go for a year, but it didn't work out. I think that they say that around 50% of women give it up at some stage. I read that somewhere. You just have to be confortable with your decision and would you be ok if it came back and you hadn't taken it? I'm ok with that. You can take a 'holiday' from it and see how you go, which sounds like what you're doing. Nothing is set in stone. I kept a packet or two for a few months, just in case. All the best with everything. It's good to look at your type of breast cancer and weigh up all the factors. x

It's very important to take your hormone blockers orders on them for five years and the doctor told me that if I hadn't been my recurrence after 10 years would've been a lot earlier . There's no point in taking them if you don't feel well ask you Dr about other options . I have change Tamoxifen and I'm now on exemestane which is working well for me . I hope you find something that works out well for you . It is your decision but really consider the long-term impact if you decide not to take all hormone blockers. Take care

@Hankster I'm sorry about your recurrence. That must be difficult. A lot of the doctors seem to recommend taking Tamoxifen for 10 years now, or the equivalent. I had surgery, 6 months of chemo, and radiotherapy. I have done enough and face the prospect of a hysterectomy in the future thanks to Tamoxifen. I had stage 2B, grade 3 Pure Micropapillary cancer, with 5 cancerous lymph nodes at 42. It still couldn't encourage me to take it. Sometimes you just have to do what seems right to you. There's always some doubt I guess. The risk of uterine cancer was the deciding factor for me.

Thanks for all your advice and comments. I know it's my decision to make and will keep weighing up all the bits and pieces. I recently read that some labs treat a 10% and under ER receptor result as negative and another lab rates it as a positive, go figure. Will stick with the Herceptin for now and see what happens . Have a great weekend !

@poodlejules hope you are enjoying your weekend. Treatment decisions can be very tiring mentally. My experience is probably not that common. Please don't listen to me too much. LOL As Oprah says "We do the best with what we know at the time". :) xx

Tamoxifen | BCNA Online Network

19 Replies

primek
Member
8 years ago
It's a tool only. And we need to think ...oh it's only 3% but for every 100 that's 3 more that survive due to that treatment. Important if you are 1 of the 3. Your oncologist is still the best person to advise you of what they recommend rather than just a calculating tool. Oncologist have lots of hands on experience that a tool can't take into account. Kath x
poodlejules
Member
8 years ago
Yes same here @melclarity .
poodlejules
Member
8 years ago
Thanks @iserbrown. I just did the Predictor test and it gave me and extra 2.6% lower than the estimated 3%
melclarity
Member
8 years ago
@poodlejules that 92.6% is if I didnt do treatment at all LOL, the chemo and Hormone therapy literally has only given me like 2% extra lol. Hmmm interesting really, I would have loved to have not done chemo, according to the Predict it hasn't added much. All interesting anyway...but I take no notice of any of it. x
iserbrown
Member
8 years ago
Fair enough especially when weak comes into it.
You know your body and it's tolerance.
Be comfortable with your decision as quality comes into it as well as.
Take care and sending you positive energy xx
poodlejules
Member
8 years ago
@iserbrown Weak ER positive on one tumour (with HER2 +) second tumour HER2 + only. Onc said have a try and see, so I took it for 8 weeks,daily headaches,pains in ovaries and boobs etc etc
iserbrown
Member
8 years ago
Did you say you are hormone receptor positive?

What is the advice of your medical Onc or are you just doing homework prior?
Anonymous
8 years ago
I've used another prognostic tool that was much more accurate. It was on an oncology website.
poodlejules
Member
8 years ago
Well I'd be taking that 92.6 to the bank ! Great figure!
melclarity
Member
8 years ago
Hmmm I had a look at the Predict too, with Chemo and Hormone Therapy it literally only gave me 0.6 for hormone and 1.3 for chemo that's under 2% and then like 92.6% with no treatment LOL. Certainly interesting, my Oncologist already told me that the both will give me between 2-3% that's it not alot hey?? but I chose it anyway...though realistically odds are pretty high without treatment. So it just comes down to the fact that this is whats available in treatments and how they protect together...throw Prolia injections on top and TaDA LOL extra guard again.