Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Fill Out Your Profile to share more about you. Learn more...

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

Rioghnach
Rioghnach Member Posts: 6
edited July 2021 in Alternative Medicine

Hi guys,

I was diagnosed with stage 3 bc in February. Currently seriously considering not taking the tamoxifen and five years of zoladex I have been prescribed. I'm researching a lot and it seems based on the date that hormone treat may give me max a 10% reduction in my recurrence rate. I did AC-T chemo, had a double mastectomy and will be starting radiation soon. I am not anti-conventional medicine, I just don't think the medical team know the full story (ie no knowledge and/or appreciation for the role lifestyle and environment play in creating cancer) and this is most of an issue when it comes to hormone treatment, in my opinion.

I am wondering are there many on this forum who refused hormone treatment and are still recurrence free? Please feel free to respond also if you refused hormone treatment and you did have a recurrence. My mind is open to everything relevant!

I am 31 years old and my cancer was all grade 1, which will also be influencing factors in my decision I think.

Looking forward to hearing from you all!

Comments

  • Racy
    Racy Member Posts: 974

    Hi. My response won't answer your question directly but at 31 and with stage 3 cancer, I would say that a 10% benefit is not a small consideration.

    I have been on hormone therapy for seven years with no side effects and intend to keep taking it as long as possible for any benefit it can incur. I was 48 when diagnosed.

    Some patients worry about side effects. You can always start taking the medications and stop if you feel you can't handle side effects. These treatments are usually much gentler than chemo.

    Perhaps discuss the pros and cons further with your oncologist.

    Ultimately, it is your decision and I wish you the best in making the right decision for you.

  • pi-xi
    pi-xi Member Posts: 177
    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!
  • NotVeryBrave
    NotVeryBrave Member Posts: 169

    I guess the big question is whether it would reduce your personal risk by only 10% vs reducing your risk to 10%. The general consensus is that hormonal therapies reduce whatever recurrence risk you have by 40-50%.

    If you check out any of the risk calculators, it seems that hormonal treatment is actually more important than chemo. Crazy.

  • dtad
    dtad Member Posts: 771

    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.

  • monarch777
    monarch777 Member Posts: 338

    I went metastatic after not taking them for 3 years

  • christina0001
    christina0001 Member Posts: 449

    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.


  • Rioghnach
    Rioghnach Member Posts: 6

    Hi Everyone, .

    Thanks so much for all your replies.

    My 10 year survival rate is about 30% without the hormonal intervention and about 40% with it. So it is a significant difference really. I do want to take the drugs on one hand, as I do want to feel I did all that I could. On the other hand, I don't want children and am a very independent person so my quality of life is very important to me and I feel now that I don't mind if my life is shorter so long as I was able to experience it the best way I could. Saying that, it is quite likely that I wouldn't feel that wa though if I actually got a Stage IV diagnosis.....

    So I think I'll take them and give them three months and see what the side effects are like then... I hear they do get a bit easier?

  • bella2013
    bella2013 Member Posts: 370

    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🙏.


  • edwards750
    edwards750 Member Posts: 1,568

    I totally agree with Bella. Do you really want to opt out and take a chance on a recurrence? Of course there are no guarantees but it is yet another preventative measure to keep the beast from coming back.

    Don’t assume you will have side effects that are unmanageable. I didn’t. I recall telling my MO I didn’t want to deal with the possible weight gain and she let me know she had patients who lost weight on the drug. That was really short sighted of me to even complain aboutthat given I was dealing with a cancer diagnosis and I’m worried about weight gain? Seriously?

    Just be sure you don’t second guess yourself or look back and wonder what if..

    I would at least give it a try. Btw I’m 7 years out last August. I took Tamoxifen for 5 years. Joint pain and occasional lack of concentration were the only SEs I experienced.

    Diane

  • Polly413
    Polly413 Member Posts: 31

    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

  • Denise1966
    Denise1966 Member Posts: 4

    I too am going to go the holistic route. My lump is 0.9 IDC, Her2-, estrogen rooster one positive, 50 years old and choosing double mastectomy.

    I had a stroke at 37 from taking birth control for 2 weeks so I REALLY do not want to take Tamoxifen. Does that speed up menopause besides possible weight gain? I gained 10 already from an injury so I don’t need more as I’m recovering. I also have a sensitive stomach. I’m pretty set on no chemo or radiation

  • minustwo
    minustwo Member Posts: 12,988

    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.

  • VioletKali
    VioletKali Member Posts: 97

    7 years right here..DX. at 31..

    I am aware of the risks. I Also will never do chemo again, only therapy that doesn't affect my quality of life..I am a DNR. I am not afraid to die, I am afraid to live poorly.

  • Amyadipose
    Amyadipose Member Posts: 13

    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.

  • racheldog
    racheldog Member Posts: 209

    Amyadipose: Did you go to a Naturopathic MD for guidance on the route you took. I have done chemo (made it through 4 cycles) and almost done with 4 weeks radiation. Then 4 more Herceptin infusions and possibly AI? It is the AI that I am totally on the fence about. I am older and I keep telling myself that I will go through all this once. I think when one is older that oncologists are maybe starting to look at de-escalation. I cannot go through chemo again---especially when I am older. I am amazed that Big Pharma has not come up with other alternatives on meds to reduce estrogen. The current 4 choices just have way too many side effects, IMO.

  • KateHanni
    KateHanni Member Posts: 70

    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.