Tamoxifen

poodlejulespoodlejules Member Posts: 43
edited September 15 in Day to day
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 

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Comments

  • LucyELucyE Member Posts: 233
    edited September 15
    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
  • HanksterHankster Member Posts: 27
     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 
  • LucyELucyE Member Posts: 233
    edited September 15
    @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.
  • poodlejulespoodlejules Member Posts: 43
    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 !
  • LucyELucyE Member Posts: 233
    edited September 16
    @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
  • poodlejulespoodlejules Member Posts: 43
    edited September 16
    @LucyE Thanks and I am, I feel good today and getting more energy everyday, although a bit of sun might help things along in grey old Melbourne! Grateful for your advice, Julie ;)
  • melclaritymelclarity Member Posts: 2,425
    @poodlejules I think what's valid is your own personal diagnosis, as you are a combination of Her2+ and ER+, they said the ER was only a small %? so seems your Specialists are being thorough and yet maybe not totally necessary. I was on Tamoxifen for 4yrs and had zero side effects honestly, different story at 2nd diagnosis, once treatment throws you into menopause and the combination is a little tough, for me with Arimidex and now Aromasin Im just stiff and sore but once I get moving am fine.

    There has been a study too that came out not that long ago stating that Tamoxifen doesn't work in 1/3 of cases, it's learned to adapt uuugh! hence why I had a recurrence, it doesnt work for everyone.

    It's very individual, do what feels right for you. Big Hugs xoxoxo Melinda 
  • primekprimek Broken HillMember Posts: 3,201
    If you have your path results I recommend googling  Predict...which will show you the difference with or without the hormone blockers. Your oncologist can go through that with you. For early breast cancer my results of same pathology (mine was stage 1 grade 3 and no nodes  and I had ACT-H  chemo) the hormone blocker tajen for 5 years made a significant difference in 10 year survival. Greater than herceptin and chemo is my understanding. I don't think anyone likes the side effects, but if livable...and it does improve over 6 months, then my belief it is worth taking to reduce the chance of metstatic spread. Goodluck with your decision. Kath x
  • poodlejulespoodlejules Member Posts: 43
    @primek . Just had a quick peak at Predict, an amazing tool........I wonder if the specialists use it?? Don't know if I want to try it though!! Forewarned is forearmed ?
  • melclaritymelclarity Member Posts: 2,425
    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. 
  • poodlejulespoodlejules Member Posts: 43
    Well I'd be taking that 92.6 to the bank ! Great figure!
  • LucyELucyE Member Posts: 233
    edited September 16
    I've used another prognostic tool that was much more accurate. It was on an oncology website. 
  • iserbrowniserbrown Member Posts: 1,655
    Did you say you are hormone receptor positive? 

    What is the advice of your medical Onc or are you just doing homework prior?
  • poodlejulespoodlejules Member Posts: 43
    @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 
  • iserbrowniserbrown Member Posts: 1,655
    edited September 16
    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
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