Fill Out Your Profile to share more about you. Learn more...

Anyone reject the Hormone Treatment

Ajarrell
Ajarrell Member Posts: 2
edited July 2019 in Stage I Breast Cancer

Onco 23% with no Hormonal Treatment 15% per the doctor if I take Hormonal Treatment only 8% if I did take it. Breast Cancer 1cm Stage1A, Grade 2, ER+ PR+ Her2- Had a bilateral mastectomy no cemo/Radiation needed. May 2015, Reconstruction complete December 2015. Anyone out there reject Hormone Treatment and still a survivor???

«1

Comments

  • fifthyear
    fifthyear Member Posts: 29

    I did not have Hormone treatment, only Rads and lumpectomy. My onco was 16. We are all different and there is no guarantee. Talk with your docs, if you are unsure, get a second opinion about what treatments is best for you. Celebrate the completion of your treatment and reconstruction and enjoy life. Be aware of changes and take good care of your body are key IMO.


  • HazelFrances
    HazelFrances Member Posts: 40

    I am skipping hormone treatment. I was not able to get an Oncotype because I am ER-. My biopsy results were ER-, PR. 34% positive, HER2-. The pathology report from the mastectomy was ER-, PR+ 1.6%, HER2-.

    My Onco still wants me to take aromitase inhibitor because she says breast tissue is heterogenous, and each report is a snapshot of some portion of the tumor.

    I am pretty sure I am not going to take it because 1. I have fibromyalgia and it would harm me there and 2. I'm not even sure 30% PR + would be enough to take it for, and I also think the mastectomy sample may be more reflective of the true disease, since it has more tissue than a biopsy

  • tgtg
    tgtg Member Posts: 75

    I declined hormonal therapy for a pretty low-risk scenario (see stats below), and in view of my age at diagnosis and treatment. You didn't indicate your age, but the larger, often fatal, health risks (clots, stroke, glaucoma, etc.) to a 71-year-old healthy, fit, active woman like me were just too great, compared to the minimal benefits (8%) of hormonal therapy. I maintain a healthy weight,eat healthily and consume as little sugar and fat as possible (they're the fuelers of estrogen at my age), work out at the gym faithfully, stay as active as before diagnosis, and look forward to follow-up checks and imaging as reassurance that I am fine, rather than dreading them as harbingers of more disease.

    Basically I am not a meds-taker, except for acute problems, and I believe it is not wise to mess with Mother Nature, especially her hormones! I am old enough to remember the hype about the birth control pill when it appeared in the early late 50's/early 60's, hype that "assured" women that tests had shown the pill was safe. What the hype didn't say was that the safety was tested on the basis of just 5 years. Within 10 years, though, all kinds of dire problems started showing up and the chemical composition of the pill had to be redesigned.

    But we are all different--and this is a decision I made after reading a lot of medical journal articles (not just the advertising blurbs put out by drug manufacturers). The best advice I got came from my primary physician of 30 years: "Whatever decision you make, be sure that you will be able to live with it and not look back or second-guess it." Good luck to you as you grapple with your decision.

  • KBeee
    KBeee Member Posts: 695

    Ajarrell, You do not have your info listed or your age. It is an individual decision you have to make based on the risk/benefit to you. Age and whether or not you are raising kids should be a consideration too since a recurrence affects more than just you in that case. Ultimately only you can make the decision, but you have to make sure that should it return you'd be comfortable with your decision with no regrets. It's not an easy decision. Best wishes.

  • pumela115
    pumela115 Member Posts: 48

    Hi,

    I was stage 2B, 3A, and had 6 nodes positive. I tried The AI's 4 different times and I just couldn't live with the side effects. June 9th I will be 6 years out. Had a couple of scares but I'm still here and currently NED. Everyone is different, talk to your doctor and make the best decision for you. Maybe you could try them, some people have very little side effects. You can always stop. I wish you the best!

    Pam

  • MagicalBean
    MagicalBean Member Posts: 192

    I had a lumpie, rads, and have been on Tamoxifen for over a year with no side effects. I am highly ER and PR positive ( >95%) and it was a grade 3. I wanted to use all the available ammunition so I chose to give it a shot. It is such an individual decision. The nice thing is that if you do develop issues with the med, you can just stop taking it. Good luck and be at peace with whatever you decide to do.

  • Blessings2011
    Blessings2011 Member Posts: 1,801

    My IDC tumors were tiny - 1.5 milligrams and .5 milligrams - smaller than a grain of rice! So I thought I was in the clear when the final path report showed no cancer cells. (They said the biopsies got all of it.) I dodged both the chemo and the rads bullets. So I was shocked when the MO told me I had to take an AI for five years.

    I insisted I didn't need them. After all, I was post-menopausal, and post-hysterectomy. There wasn't a smidgen of estrogen left in my body.

    Then she told me that estrogen was still being produced in my belly fat. That shut me up quick. I went into a medically-supervised weight loss program and lost 60 pounds. I thought THAT would end the discussion, but she still put me on Arimidex. After all, I was 100% ER+.

    I stayed on it for a year, most of which I was fairly disabled by some life-threatening side effects. She was shocked I waited so long to tell her. She gave me a two month drug holiday (in which all the SEs disappeared) then put me on Femara. Sadly, the SEs came back and I stopped taking it six months later.

    Honestly, there are so many stories here about women who have only minimal SEs on the AIs. If I had a more advanced stage, or a larger tumor, or young kids, you'd better believe I would take anything the MO handed me.

    But as it was, other factors played into the decision to stop taking the drugs entirely. My husband is ill, and I didn't know if he would still be able to travel in five years. My quality of life had dropped so much that we gave up our plans. The MO said that I was one of a handful of patients who she was completely comfortable telling them to stop the drugs.

    But I am still a cheerleader for the AIs....  I always suggest that you try them. You may be surprised, and if there are SEs, there are many solutions, or you can switch drugs.

    p.s. I'll be a five year survivor this year.

  • dtad
    dtad Member Posts: 771

    Ajarrell....I had a BMX May 2015 too! Im 63 now and obviously post menopausal. I was taking HRT at the time of diagnosis and have since stopped. So for now Im dealing with my estrogen levels plummeting from that. Ive also lost 25 lbs since diagnosis and feel that also contributes to lowering my estrogen levels. I also suffer from a debilitating autoimmune disease. I refuse to take anything that will affect my QOL even more. For those of you that say that you can just try unfortunately some of the SE can be permanent. I understand that having little to no estrogen is good for hormone receptive bc but its bad for every other organ in your body....bones, brain, heart, skin, hair, etc. This is a very personal decision and yes you should be comfortable with it no matter what the outcome. Good luck to all. PS My oncotype is 27 and I did not have chemo with docs approval.

  • labelle
    labelle Member Posts: 134

    There are several topics on the "alternative" and "complementary" boards that discuss alternatives to hormone blockers.

    I'm sure many women refuse these drugs for a variety of reasons, and I know many do not complete the recommended time on them due to side effects and our doctors' failure to acknowledge or have a good way of helping us deal with these side effects. There is not a lot of support on this site for alternatives/not doing what your doctors recommend, so it seems many choosing the alternative pathways stop posting here.

  • pupmom
    pupmom Member Posts: 1,032

    dtad, can you tell me which SEs are permanent? I've never heard any are. I've been on anti-hormonals for 4 1/2 years. I have had SEs, but they come and go. Currently, I am good regarding QOL from bc treatment.

  • dtad
    dtad Member Posts: 771

    yorkiwmom....some of the joint issues can be permanent. I'm glad you are doing ok and your QOL has not been affected. Take care and good luck to you...


  • Blessings2011
    Blessings2011 Member Posts: 1,801

    yorkiemom - I do still have trigger fingers on each hand that started with the Arimidex. It went away on the two-month drug holiday I got, but started up again when I switched to Femara. It's not as severe as when I was on the drugs (locking up numerous times a day) but it still lingers three years later.

  • Seagull101
    Seagull101 Member Posts: 1

    I have glaucoma. I was diagnosed 17 years ago and have been doing my drops daily for that long. I have not done the radiation yet but my MO has discussed HT and wants to give me an AI. I know from reading here and elsewhere that AIs can cause glaucoma, though it tends to go away once that therapy is stopped. What I want to know is what effect AIs have on someone who already had the disease. I will be contacting my eye doctor before I start the hormone therapy but would like to go with as much info as possible.

  • meow13
    meow13 Member Posts: 1,363

    I am having eye trouble as well. Severe dry eye. I stopped AI almost a year ago. The pain in my leg is finally subsiding. I did 4 years of the stuff enough.

  • moderators
    moderators Posts: 7,634

    Dear Seagull, Welcome to the community. We are glad that you reached out here. Here are a couple of ideas for possibly findings others with a similar situation. You can do a search using the blue tool bar to your left and typing in glaucoma in the search bar. It will offer other posts throughout the boards with questions or comments about glaucoma. You also may want to look at the forum called Breast Cancer with another diagnosis. We hope that you will stay connected here and keep us posted on what you learn from your doctor. The Mods

  • Ajarrell
    Ajarrell Member Posts: 2

    Age 53, 1 cm Stage 1A, Grade 2. IDC - ER+ PR+ HER2-

  • Kzena
    Kzena Member Posts: 3

    I was wondering if anyone opted out of anti-hormonals that only had mild SE's . I keep thinking that losing weight would be as beneficial if not more than taking the anti-hormonals. I'm about 30 lb. overweight and of course the medication makes it hard to lose. Which is worse ...overweight or no meds? Would love to hear opinions! Kzena

  • dtad
    dtad Member Posts: 771

    Kzena...thats a really good question. Im not sure we will ever know the answer because I don't think they will ever do studies on those of us who are NOT taking anti hormones. However I often wonder if the weight gain negates the purpose of them. Of course we could tell by testing our estrogen levels but most docs don't do this. Guess we all just have to do what seems right for us. Good luck to all.

  • brooksidevt
    brooksidevt Member Posts: 1,432

    Anti-hormonals have been shown through research to reduce the chance of distant recurrence by just about 50%. Weight loss slightly reduces the estrogen our bodies produce.

  • dtad
    dtad Member Posts: 771

    Brookside...not sure weight loss and how it affects estrogen levels has been studied thoroughly. Good luck to all.

  • brooksidevt
    brooksidevt Member Posts: 1,432

    I'm sure it has not! From my point of view, losing, say, 20 pounds from my dainty 200-pound self would certainly be advisable, but whatever fat is left in my body (post menopausal here) would still be busily manufacturing estrogen, all of which would be available for any leftover cancer cells to snack on. For me, I'd much rather block those estrogen receptors (I'm on tamoxifen after rebelling against arimidex) and go with the known 50% reduction in risk of mets that my oncotype report, er, reported. Actually, I'd prefer to do both, but the weight loss seems to be always just a little out of reach. Why the heck can't a grown woman have enough sense to not buy trigger foods? Ugh!

  • NCDi
    NCDi Member Posts: 61

    I have been on Arimidex for a year and gaining weight, having back and hip problems, probably due to the weight I am gaining. I am cold all the time, keep the house thermostat on 79f and that is still cold.

    Am taking a break to see if the weight can be lost and if I can start to get warm again. Saw my doc today and he wants a thyroid check. Hot flashes would be lovely!

    Bit disappointed but have battled weight gain my adult life, finally shed it ten years ago and not going back there especially with the joint pain.

    Comments woukd be appreciated.


    Thank you

  • radgal
    radgal Member Posts: 23

    I am not taking aromatase inhibitors (AIs), Tamoxifen or any other medication.

    My Oncotype score is 2 and I had a test through BioTheranostics which also showed a low chance of recurrence. Honestly, regardless of these test scores, the side effects of AIs and Tamoxifen that I read about on this site really scared me.

    I'm 54 now (in two days, it will be my one year anniversary from my breast cancer surgery) and I just got back into running. I read a lot about AIs and Tamoxifen before I made my decision. I even spent time reading posts in the Stage 4 forum on this site.

    I may be wrong but the gist I got from reading those posts and information about these medications is that there is no guarantee that taking it or not taking it will prevent recurrence.

    Again, it is the side effects that scared me away.

    For a minute I was all ready to take testosterone pellets as they require a small dose of anastrozole with them. Perfect! I would get the benefits of both! But then my breast cancer surgeon said that my tumor is also androgen receptor positive so that idea got nixed.

    I take B-vitamins--that is all I take.

  • Yaniza
    Yaniza Member Posts: 83

    I rejected hormone treatment. Besides the contraindications that have already been described my oncologist said that there is an increased risk of uterine cancer. I might have felt differently if the pathology from my mastectomies had not come back with clear margins. I luckily require no radiation or chemo.

  • roche
    roche Member Posts: 36

    Hello
    I'm hoping to learn more about radiation therapy here and maybe shed my fears. I am being given the choice of radiation, hormones, or both as follow up treatment for a lumpectomy. Could some members share their radiation experience? Has anyone had the "Canadian" treatment? I, like many of you are afraid of possible side effects from hormones. The RO described the side effects as minimal. I know everyone responds differently, but if the RO wasn't being straight forward about the treatment, I will be very upset. I don't like surprises and I don't know if I could tolerate some of the se I read about. Thanks
    Roche


  • pupmom
    pupmom Member Posts: 1,032

    Roche, since you have not filled out your diagnosis on your profile, it's pretty hard to respond.

  • marionsgirl
    marionsgirl Member Posts: 18

    The only major side effect I had from 6 weeks of daily radiation was fatigue. I had to take long naps every day. There was some discomfort in the area that received the radiation - from my collar bone to below my breast, basically the whole side. I did have more heartburn than usual and my RO said that was because my esophagus was in the area that received radiation. He gave me a medication to drink and it was a big help. The discomfort went away a few weeks after I finished. I finished on February 29, 2016 and was told to be very careful of being out in the sun that summer. Since I had lost my hair during chemo, I was always wearing a hat outside and using a very strong SPF. The nurses gave me creams and lotions for my chest and breast to help with the dryness. It is almost a year and I still have twinges in my breast but my MO said it is from the radiation and will go away in time. I had a lumpectomy, sentinel node biopsy with one node of three removed tested positive. I had 12 weeks of chemo and am now on Aromasin for 5-10 years. Side effects are hot flashes and insomnia. My oncotype score was 25. I was anxious before I started it but the staff at Dana Farber was great. It was a grind having to go every day but the treatments were pretty quick - 10-15 minutes.

  • marionsgirl
    marionsgirl Member Posts: 18

    The only major side effect I had from 6 weeks of daily radiation was fatigue. I had to take long naps every day. There was some discomfort in the area that received the radiation - from my collar bone to below my breast, basically the whole side. I did have more heartburn than usual and my RO said that was because my esophagus was in the area that received radiation. He gave me a medication to drink and it was a big help. The discomfort went away a few weeks after I finished. I finished on February 29, 2016 and was told to be very careful of being out in the sun that summer. Since I had lost my hair during chemo, I was always wearing a hat outside and using a very strong SPF. The nurses gave me creams and lotions for my chest and breast to help with the dryness. It is almost a year and I still have twinges in my breast but my MO said it is from the radiation and will go away in time. I had a lumpectomy, sentinel node biopsy with one node of three removed tested positive. I had 12 weeks of chemo and am now on Aromasin for 5-10 years. Side effects are hot flashes and insomnia. My oncotype score was 25. I was anxious before I started it but the staff at Dana Farber was great. I was a grind having to go every day but the treatments were pretty quick - 10-15 minutes.

  • roche
    roche Member Posts: 36
    You were in good hands at Dana Farber Center from what I have read. I guess treatment center and staff make a difference too. The side effects you experienced from rads seem tolerable, I guess. Did you have the long or short version? You are also on hormones. I was told I didn't need and wasn't offered the oncotype test. If I was a gambling lady, I'd forego the treatments and take my 20-30% chance for reoccurance, but I'm not. Thanks for sharing.
  • Beckers
    Beckers Member Posts: 979

    I rejected the hormone treatment. I do have a bottle staring at me. My Onc wants me to take for year 5-10. They have a new test giving an idea of who may benefit from taking for 10 years. Our cancers look identical and he said it is notorious for recurring even 10 years + out. Lots to think about. Good luck