Anyone here a long-term survivor who refused hormone treatment?

Racy, what have you been taking? How wonderful to have no side effects!

Rio, I would imagine that most people who had decided not to take hormone therapy aren’t on the forums. The argument is usually that those who stick around are those with side effects. No hormonal therapy means no side effects from that part of treatment. If they haven’t recurred, there is not much pulling them to BCO. Of course, there are exceptions. However, having read your stats, I respectfully recommend that you at least try the hormonal therapy. Wishing you the best!

Hi Rioghnach...Hi there. I am one who refused anti hormone therapy. I'm almost 4 years out from the diagnosis. HOWEVER, I was 62 and stage one. I do NOT think I would have refused it if I was your age and your stage. IMO you should at least try it. Of course its your body and your decision. Good luck and keep us posted.

I took tamoxifen for a year and then quit. I hated the side effects! For me, weight gain and depression. I can't recall how long it's been since I took it, probably around 4 years. But I just had a scare and it really made me question the wisdom of not taking the tamoxifen. I have two small children who rely on me. I have an appointment with my oncologist next week to talk about restarting tamoxifen. I totally respect anyone who educates themselves and decides against treatment, it's such a personal choice. For me, I realized that I could not forgive myself for doing all I can to prevent a reoccurrence. I'm not doing it for me, my kids need their mom and I will take it for them regardless of side effects. There's so much evidence that tamoxifen will reduce your risk of reoccurrence.

Rio, I am 61, diagnosed this last year. I am hyperventilating at the thought of a 31 year old with Stage 3 hormone receptive breast cancer not taking anti-hormone therapy. Please don’t be offended by my response. I get struggling with the thought of side effects...but at your young age you have estrogen pouring through your body. If that isn’t addressed you will have a recurrence. You have been through the worst treatment that a cancer diagnosis can deal out to you: BMX, Reconstruction, chemo therapy and radiation. I promise you that if you can handle all of that you can handle side effects from Tamoxifin and/or Zoladex. Your ovaries have to be shut down...unfortunately that means that you are going to experience menspause at an early age. And on top of that you have two adrenal glands that are producing 20% of your estrogen. It sucks but it’s doable. I have found that for every SE that I think is attributed to Anastrazole, I can find a solution to keep it at bay.

It’s easy to think that after all you have thrown at this beast that you are done and all is okay. It should be but all is not okay. Life style changes, keto diet, supplements, etc. are all very important to your post cancer care. It just won’t be enough to fend off a recurrence. Think of the California wildfires...the fire is your cancer...the wind and extremely dry landscape are your hormones. They fuel the fire and keep it going

Regarding your cancer team...probably just about everyone on this web site has had thoughts that conventional anti-hormonal treatment is the MO’s “go to” treatment plan and just maybe it won’t be necessary. Those are thoughts I had early on in my diagnosis and treatment plan. I had Anastrazole in my bathroom cabinet for two months...frightened of the side effects. I finally made peace with it and started taking it. I am now grateful that I have this little pill that may prevent any future recurrence. Your cancer team is trying to keep you alive for a very long time. The longer I am on it the more confident I am that it’s doing its job.

When I was 31, I wasn’t planning on having children either. I married a man ten years older and had a vasectomy from a previous marriage. I was relieved to know that he wouldn’t be pressuring me to have babies and stay home. I had a wonderful corporate job that let me travel. It was a marvelous time in our lives. By 34, the maternal hormones raised their head. All that I didn’t want at age 31 was all I wanted at age 34. We built our family through adoption. My point in telling you all of this is to say life changes. You sound like you love life and all that it offers. You may not have children but you do have others in your life who love you and want you to be around for a long time. Now is not the time to roll the dice.You are too young and you have too much life ahead of you.

Sorry for the long post and sorry my maternal instincts kicked in..but I have a 33 year old daughter and if she declined to take it I would be crushing it up in her cereal every morning. You might read the Stage IV metastatic breast cancer discussion board. Don’t post...just read. It is an eye opener what awaits us if we get metastatic breast cancer.

You are in my thoughts as you make your decision🙏.

I have done both -- refused and accepted. In 2000 I had DCIS grade 2 at age 55. It was extremely small (about 1 mm - the tip of a ball point pin) and the surgeon who did the lumpectomy got very wide margins. Nevertheless the tumor board at that teaching hospital recommended radiation and tamoxifen. I was premenopausal and had been on estrogen replacement for 10 years so I had a lot of estrogen sloshing around in there. But I refused both radiation and the tamoxifen. 19 years later I have not had a recurrence in that side.

But flip the calendar 18 years and I had IDC Stage IIA, Grade 2 with 1 positive node in the other side. This time based on a Mammoprint showing high risk I did not only chemo (AC/T) but also am on letrozole (I am post menopausal now). I have been on this pill for 9 months. Like you I really worried about QOL but as some posters point out I knew I could stop it if I wanted to. At first I had joint and bone pain but that has subsided and now I only have stiffness when I stand up. So it really does not bother me otherwise now.

The point is that its your decision and the important thing is to give it careful thought and don't second guess it. I do agree that at your young age with grade 3 you would do well to give it some hard thought before you decline hormone suppression without trying it. I had 2 oncologists tell me that after surgery, letrozole was the most important thing even more than the chemo or radiation. Good luck with your decision. Its so hard I know. Polly

Denise -no one has posted on this site since 2018. If you go to the search function, you should be able to find several other thread where this position is discussed.

Not too long term, diagnosed in may 2019. Did one chemo +2 perjeta/tamox and quit instead of the 6 recommended. Shrunk tumor from 1.6cm to.7mm (smaller than pinhead) In 4 mos. Using mostly Rick Simpson oil, eliminated sugars and carbs, juiced a ton of greens, essiac tea, hormone regulating herbs and mushrooms, dandelion root etc. I feel great and have lost 40lbs. Have met many survivors who've gone all natural on fb and other forums. Not foolproof, but neither is traditional, without the side effects. No regrets, even if it comes back.

I agree with you that the AI's have side effects that for many are unmanageable. I'm in the process of having taken two generics, both with intolerable side effects, and praying the third one is gentler for me. My mother had the same cancer as I have, except hers was caught earlier so it was DCIS and mine is IDC size 1 cm, HR+, PR+ Her2- grade 3, Ki67 of 34% and I had lumpectomy and brachytherapy radiation. I thought that would be the hard part! Unfortunately my mom had no notable side effects and just finished her 5th year on anastrozole (I could only tolerate for 1 week). Her cholesterol shot up, her blood pressure shot up and her memory is gone. I am hoping it returns for her as it's very distressing to witness. She is 84. I am 61 and the side effects from both anastrozole and exemestane both kicked my proverbial butt and I'm so upset about it but I'm hoping that some of the UK cancer blogs where they discuss the difference between brand and generic making a big difference for many women so I've asked my insurance to cover Aromisen brand such that I can try that before being switched to letrozole.