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Anyone reject the Hormone Treatment



  • roche
    roche Member Posts: 36

    Hello yorkiemom,
    Sorry, I'm learning. My profile might be incomplete, Filled out the diagnosis but will have to see what happened to it. Lumpectomy, Nov. 2016 is missing.

  • Coolnana
    Coolnana Member Posts: 2

    I'm 67 yrs. old had lumpectomy... 3 weeks of radiation and now trying the antiestrogen meds...... so far not so good.... many side effects for me my OC said this should be my last try on tamoxifen.... terrible insomnia etc. my onco was a 9 and I was stage 1 with 2very small tumors..... estrogen positive... my OC said25% of women can't take these drugs and quality of life is also important. I'm also dealing with Hashimotos hypothyroidismig

  • Coolnana
    Coolnana Member Posts: 2

    Sorry my Ipad froze....I'm very sensitive to meds and had a rough last week of radiation. Dr. said never saw that before.... could hardly walk out of hospital the last week of treatment and the last day got a temp of 103... again they say very unusual..... so I'm thinking of not taking the meds..... with all the research Iv done and how my body reacted so differently to the radiation I'm really concerned about what the side effects of meds...... all we can do is what we think is best for us and our bodies.

    Would like any feedback on what other experiences were

  • Ronnie3001
    Ronnie3001 Member Posts: 155

    I was dx with breast cancer stage 1 in 2007. I did chemotherapy and radiation as was prescribed Tamoxifen of which I decided not to take due to side effects. Fast Forward to August 2017 when I was diagnosed with Stage V, Bone Mets. When I asked my ONC if the recurrence was triggered but not taking hormone pills she could not confirm... I am kicking myself for not following through with the treatment...

  • bevin
    bevin Member Posts: 519

    Goodness, certainly you've received a lot of good input here to consider and help make your decisions. Its a personal one for sure but not to be made lightly.. To chime in, I'd offer that antihormonals are very good medicine. Stage 4 folks are put on those generally first and for many woman they bring them to ned.  Don't underestimate the power of this small pill. It can save your life. Also, keep in mind many woman have no symptoms from taking them. This may be you. Good luck in your decision. 

  • Zarasbaba
    Zarasbaba Member Posts: 5

    yes I did 6 years ago, and I haven’t seen my oncologist I’m kinda Regretting that decision now!! Yesterday I was in to see him, for another reason, I was flooded with emotions , to the point of me crying, ( I wasn’t in his office in six years) I suppose He saw the look on my face, I had an Lympdrema infection aka cellulitis, under my right arm, where the three lymp nodes had Invasive cancer, I was urinating blood, the urologist couldn’t find the source, I didn’t tell my oncologist that, this all happened back in July, he did not give me any words of encouragement , he took blood, I’m going for a bone density test,funny I found out in 02/12 I had breast cancer, I rejected the hormon treatmen because, I was going for back surger, I wasn’t this emotional when I found out I had breast cancer 😐😐😐 oh and I am a smoker ...... now for my waiting game!

  • monarch777
    monarch777 Member Posts: 338

    Took AIs two years 2012-2014. Stopped, metastatic since summer of 2017. Quality of a shortened life is worse now.Scared

  • dtad
    dtad Member Posts: 771

    Hi everyone...yes I refused aromatase inhibitors from the start. There were several reasons but the main reason was QOL issues. I already had poor QOL due to multiple autoimmune disease. I just wasn't willing to compromise my health any further. I did chose to lower my estrogen levels naturally. I lost 30 pounds and try to exercise daily. Both have been shown to lower recurrence rates by 40 percent. I also take several supplements. I am almost 4 years out. I'm not advocating this for anyone but myself. Good luck to all navigating this complicated disease.

  • windingshores
    windingshores Member Posts: 160

    Aromatase inhibitors address estrogen made in the adrenals. 

    I have taken Femara for 4 years. All the obvious side effects, like hot flashes and joint pain, went away but the subtler ones like fatigue are stronger.  Not horrible, but it does get to me. My already bad osteoporosis is about 7% worse.

     Overall I would rather be tired or even disabled than dead. If I didn't have kids who still need me (late 20's) I might do things differently.

    At the 5 year mark I am going to ask for testing to see my risk level. 

    I have read on the Femara insert itself, that 20% of the regular dose is effective so that is another thing to consider. My oncologist also said it may be possible to pulse, meaning on and off.

    I can't go on Tamoxifen because of afib and clot risk. If I were to go on a blood thinner, I would consider that, just to vary the effects on my body from treatment. I want to go as long as I can.

  • dtad
    dtad Member Posts: 771

    Again I do not understand why every time someone starts a thread on not taking anti hormones people find the need to respond with fear mongering. The title of the thread is "Anyone Reject Hormone Therapy". There are plenty of other threads that deal with the benefits of anti hormone therapy. Even though I did not take them, I always say that it was my personal decision and I do NOT advocate it for anyone else. Everyone has different circumstances and that is why different paths are taken. However when someone is looking for those who did not take it, IMO is just not appropriate to reference disability and even death for their personal decisions. I support and respect all individual decisions made.

  • Sketches
    Sketches Member Posts: 1

    hi, I'm new to boards. I completed my radiation just before Christmas and was put on Tamoxifen, which I requested because I didn't want the Arimidex because I would then need the Prolea, I had tried Fosamax for a short time several years ago and it was horrible for my stomach. As soon as I began this process I started getting severe headaches and absolutely no sleep. My oncologist insisted it is all in my head. I have a neurological problem already and fibromyalgia. My neurologist prescribed a low dose of Neurontin, which made a big difference. Now I am getting horrible gastro problems. Once again my oncologist told me it's all in my head. I am going to try to change oncologists. Both she and my internist insist that tamoxifen has absolutely no side effects.

  • dtad
    dtad Member Posts: 771

    Scetches...I'm so sorry your docs are denying the side effects of Tamoxifen. All you have to do is read these boards to know that is just not true. IMO they do you a great disservice by doing this. Maybe if they listened and worked with you on how to deal with the side effects, the compliance rate would be higher. As it stands only 40-50 percent complete the recommended years due to side effects. My breast surgeon at a major NYC teaching hospital told me this. I do not see how this could be an effective treatment when the compliance rate is so low. We need to speak up for better treatment options!

  • VioletKali
    VioletKali Member Posts: 97

    I cannot take the ovarian suppression or AI because they caused me reduced quality of life.

    I cannot use tamoxifen because I MUST use my prozac, I refuse to stop taking my medication that has kept me happy and stable for 18 years.

    I know the risks. I would rather live 1 GOOD year than 10 with side effects. That is how I feel, and I understand the risks.

  • Zarasbaba
    Zarasbaba Member Posts: 5

    so you say...I’m a bundle of nerves.. right now... I two driffrent cancers in my right breast... I had the A double mastectomy and reconstructive surgery .... I had two driffrent chemos AC/Tox I don’t recall the name..,.. that was in 2012.... I haven’t been to my oncologist in over six years...,I went though something no urologist couldn’t say why I was urinating blood ... it was bright red.... I don’t get my menstrual cycle ... it stop in 2012..,,, so now I don’t kniw what’s going on....,

  • dtad
    dtad Member Posts: 771

    Violetkali...totally get what you are saying!

  • Zarasbaba
    Zarasbaba Member Posts: 5

    hello everyone!! This message board was a blessing.. it’s kinda ironic that I’m back here!! It was 2012, back in February when I found out I had breast cancer, now I’m back,I posted on this subject a few weeks back ,

    Now here’s my story, I had the dense dose of chemotherapy , Ac/Tox , my oncologist started me in the hormonal blocking meds, I wasn’t taking them, Because I need a fusion on my back, I didn’t go back to my oncologist for almost 7 years, he did blood and an bone density test... I wouldn’t be seeing him for 6 weeks, he’s having a hip replacement, so I went back to my breast surgeon, she Examine me. She did a sonogram on my Reconstructive breast, I told her I’m having lots of pain in my breast and arm, she told me that the hormonal blocking pills are better then the Chemotherapy.

    I’m going for a MRI on my breast and an CAT scan

    This is in me , all on me and I’m giving it to Christ Jesus!!

  • pinknlavander
    pinknlavander Member Posts: 1

    My oncologist told me that its ok not to take Tamoxifen because i have hyperplasia. And i ask for alternative and she told me just monitor. I am scared that my cancer will come back if I will not take Tamoxifen but If i will take it they suggested to remove my uterus and ovary because of my higher risk in uterine cancer and soon ovary cancer. I am so confused right now whether i will take tamoxifen or not.

  • salamandra
    salamandra Member Posts: 703


    That sounds like a tricky situation. Ultimately it's a really personal decision, but I think it never hurts to get second or even third opinions. Some doctors are better at explaining things to help you make your own decision, or just may suit your communication style better. The personal details of both your cancer and your other health factors are really relevant and you need to feel like your doctors have truly taken all of that into consideration, and like you understand the risk factors. For some women, the absolute benefit of tamoxifen just isn't that high, even if the relative benefit is still 50%.

    I wonder if you've had genetic testing and counseling?

    I don't have specific risk factors for uterine and ovary cancer, but to be honest I still find them scarier than breast cancer, even after all this. That's part of why I insisted to my medical oncologist on keeping my hormonal IUD, because it has been shown to have some protective effect. (And they are lacking in specific evidence about how it increases risk for breast cancer, they just oppose it on principle because it's exogenous hormones).

    But deciding to take out ovaries and uterus would be a big move for most of us.

    I wonder whether your cancer center has a social worker you might be able to talk this all through with? Sometimes just speaking through something out loud can help, or at least help you clarify your questions and concerns? Or if you have access to short term therapy/social work through insurance or an employee assistance plan?

    Based on reading these boards, it seems to me like the number 1 most important thing is that you feel like you had the opportunity to have your questions answered and to make an informed decision for yourself. The future is impossible to predict, so feeling good about your decision is the best we've got. So I think it's really worthwhile to take the time and trouble you need to come to a place that feels right to you.

  • VioletKali
    VioletKali Member Posts: 97

    I am not taking anti hormonals. I had terrible side effects when I tried ovarian suppression and AIs. I cannot take tamox due to not being able to take a non SSRI drug.

    I had a bilateral MX too, for reference. The way I see it, if I have a recurrence on anti hormonals then I have nowhere to go. I will NOT do chemo again, so recurring on anti hormonals would not be helpful. I think my logic is somewhat sound considering my ONC told me that Tamox works for breast tissue prevention, not a recurrence elsewhere..

    I would do ovarian suppression and AI if I recurred.

  • mittmott
    mittmott Member Posts: 17

    I've been on nothing for a different reason.. I've had stage 1 twice, same breast.. First time lumpectomy/radiation. Second time bilateral mastectomy, no radiation. I had had a few lumps removed prior to my first cancer, and one came back lcis..... They put me on tamoxifn and after a year on it, I developed the stage 1.. Back then they didn't do the testing on me for onco. score. My oncologist at msk said that since my cancer broke through after a year on the meds, it meant the meds wouldn't work on me.... So she took me off... I'm 10 years out of the 2nd cancer.. I'm still on nothing.. I pray it's the right way to go.

  • cassiecanada
    cassiecanada Member Posts: 101

    Hi Mittmott-I am fairly new to board-
    but i am nearly finished radiation
    ( post lumpectomy with pathology like yours)
    and am supposed to start femara
    and fosamax soon. I doubt i will take it.
    I was interested to see that you
    took tamoxifen ( versus radiation)
    post surgery in 2000. This may
    have been standard ofcare at that time?
    Now, lumpectomy
    and radiation has same outcome
    as mastectomy. If I should have
    a recurrence ( as you did).... i would,
    like you, have a mastectomy ( cannot
    do radiation twice). I think
    that every single woman is offered
    a med after... actually encouraged.
    For me, I doubt i will take it
    tho- i just dont want the bone destruction
    from femara- i just cant fathom that-If I have
    a recurrence i will just do a mastectomy.
    If it has metastasized that may then
    change things-but i will cross that bridge
    if and when that happens.
    you are 10 years out- fantastic!
    thats a great indicator of your current
    status! So my point in all this- your
    journey mirrors very closely my own-
    I have thought thru my risksof tecurrence
    without meds. I can accept mastectomy
    and no drugs- should i have a recurrence-
    so when i see your journey- it gives hope!
  • jons_girl
    jons_girl Member Posts: 435

    I was 49 when I found my lump/tumor. I chose the no tamoxifen road. Also chose no radiation. My MO supported me as long as I have regular rechecking of diagnostics and manual breast exam. So I go for ultrasound every 6 mo. May have mri at some point too. I have very dense breast tissue and my tumor wasn’t seen on 3D mammo.

    I wasn’t overweight prior to my br cancer diagnosis. But I did loose 10-15 lbs post dx due to cutting out more processed foods out of my diet. Feel better in general with that weight off. So far so so good post dx.

  • donnaleeNC
    donnaleeNC Member Posts: 12

    Awesome, Jons_Girl, thanks for sharing. I'm considering no tamox and no radio. I would like to have Oncotype DX testing. But when I asked about it, I was first told, "Your type of breast cancer does not qualify" (it looks like its tailor-made for my type of cancer). I was next told, "There's no point in doing the Oncotype testing because you already said you didn't want chemo." What in the world is going on with these people? No, I don't want chemo. No one wants chemo. No one has recommended chemo to me. But I haven't refused any kind of treatment, either - yet. My understanding is that Oncotype DX would help me understand my risk and make a more informed decision about all types of treatment, not just chemo. Isn't that what all of us want?

    Whew, sorry for the little rant. I do appreciate all of your posts here.

    PS - Hi, Cassie!