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How many times do I have to try and decline hormone therapy.

pabbie
pabbie Member Posts: 70

Hi, My BC started in 2008. I don't want to add a pill that increases my anger., plus I get terrible migraines. I've seen several therapists and have used multiple drugs for depression, anxiety, and mood disorders. The AI's increase my irritability.

There must be something other than AI's. Thank you for listening. Take care.

Comments

  • gb2115
    gb2115 Member Posts: 547
    edited February 2022

    Have you tried tamoxifen? It's not without side effects (no medication is), but it's not an AI.

  • pabbie
    pabbie Member Posts: 70
    edited February 2022

    Yes, I took half a pill of tamoxifen for 5 years. 2008 to 2012.

  • salamandra
    salamandra Member Posts: 703
    edited February 2022

    The real answer to your question is zero. Barring exceptional factors (comorbidities, very advanced age, etc) doctors pretty much have to recommend it since it is standard of care, and they need to document that you were informed and decided to decline. In your case it seems you have had multiple BCs or a recurrence, so doctors are even more likely to be cautious. But you do not have to try it even once.

    Beyond AIs and tamoxifen, there is toremifene, which is a SERM in the class of tamoxifen that I am taking that can have a better side effects profile for people who struggled with tamoxifen. But the truth is it can have side effects as well.

    There is some evidence that lower recurrence is associated with things like maintaining lower body weight, high dose melatonin, exercise, 13 hour intermittent fasting, etc. None of this evidence is as strong as the evidence for the medicines, but they are worth considering if they are compatible with your quality of life. Especially exercise has so many other benefits that even if it does nothing for BC risk, it'll probably make your life better. But no ethical doctor would recommend them instead of traditional medicines (except of course under exceptional circumstances).

    In the end, you have to decide for you. The best you can hope for is a doctor who truly listens to your concerns, openly shares their understanding of the best and most current research, and is supportive to you thinking through your own personal risk/benefit analysis. If you don't have that kind of collaborative relationship with your doctor, it can be worth it to look for someone else.

  • pabbie
    pabbie Member Posts: 70
    edited February 2022

    Thank you for the information on a SERM., toremifene.

    Take care.


  • starbaby_1
    starbaby_1 Member Posts: 2
    edited February 2022

    After a lot of research and personal introspect, I decided not to pursue hormonal therapy. Its a very personal decision I know. I understand that hormone therapy is the "standard" of practice but don't believe that it is one size fits all. I had the Onco test done and my result was a 17. The recurrence risk WITH hormonal therapy showed 5%. At a recent visit to the oncologist I asked what it would be w/o the hormones and she said 7-8%. I can live with that and feel that the potential side effects like stroke, blood clots and bone issues are more risky than the pills. I also have a strong family history of heart disease so that is a factor too. I also feel like the healthy lifestyle is a better personal choice for me.

    BTW - I did follow through with radiation treatments which really scared me because I had left-sided breast cancer. I know that I already have "some" risk associated with that and am just not willing to add any more.

    My oncologist did not try to force me to take the pills. She understands that this is a personal decision.

    I wish you much luck in your decision. God bless.

    Dx 6/15/2021, IDC, Left, <1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2-

  • starbaby_1
    starbaby_1 Member Posts: 2
    edited February 2022

    https://www.curetoday.com/view/the-choice-to-walk-...:~:text=The%20decision%20to%20walk%20away%20from%20taking%20aromatase,cancer.%20Women%20are%20choosing%20to%20make%20informed%20decisions.

    An article that I found that some might find helpful.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,434
    edited February 2022

    pabbie,

    From your signature line it looks like you've had 4 diagnoses. Have all been on the right side (1 primary and 3 recurrences) or have you had primaries on both sides? If I'm reading correctly, you've had a recurrence after having a mastectomy?

    I think the challenge for you is that you have breast tissue that seems to really want to develop breast cancer. I would suspect that your history, with that number of diagnoses, would put you at higher risk of another recurrence - but I don't know that. What does your MO say?

    Have you tried both sterodial and non-steroidal AIs? The side effects might be different for you.

    starbaby, I agree that this is a personal decision that everyone needs to make based on their risk level from their diagnosis, and their level of risk tolerance. We can never eliminate our risk completely so the question becomes, how much risk reduction do I get from these meds and what level of risk can I live with? The difference in pabbie's situation versus your's and mine is the number of times that she has been diagnosed. Her breast cancer is stubborn and persistent, which likely puts her in a different risk category that those of us diagnosed with a small node-negative not overly aggressive (grade 2) breast cancer, like you and me. Plus she's had positive nodes with one of her diagnoses. All that combined means that pabbie's risk is likely considerably greater if she were to walk away from AIs.


  • pabbie
    pabbie Member Posts: 70
    edited February 2022

    Thank you., really good info.

  • pabbie
    pabbie Member Posts: 70
    edited February 2022

    Hi, Cancer in the right breast only., with recurrences.

    I've tried all the AI's. I know tamoxifen is not an AI but the only one I can tolerate. My onc is okay with tamoxifen.

    Take care.

  • oldladyblue
    oldladyblue Member Posts: 289
    edited May 2022

    Thanks for the posts on this thread. I am weighing out my own side effects from Anastrazole vs life without an AI. I especially liked the article starbaby posted. I can't stand the way I feel on this medicine.

  • cria
    cria Member Posts: 9
    edited August 2022

    pabbie, I'm sorry to hear that you have such trouble with AIs. Can I ask if you have tried all three of them? I know some women have horrible side effects from one and tolerate another just fine. You said that you had been on 1/2 a tab of tamoxifen for 5 years previously. Did you have side effects from that as well?

    Just so I might be able to offer better guidance, did you ever have chemotherapy or radiation? Were your margins clear on your lumpectomy, mastectomy and subsequent resections?

    You might look and see if there are any trials of new medications. I know there was a trial of a tamoxifen cream to be applied to the breasts. You wouldn't have met the study criteria, but who knows if there is some availability for off label compassionate use.


    In the end, it is your decision to take the medication or not, knowing that you are definitely at risk for a recurrence given your history.

  • carmstr835
    carmstr835 Member Posts: 147
    edited August 2022

    I also declined hormone therapy. My Dr never stops talking about it and even stated in my medical record that he believes my metastatic stage 4 to my lungs is my own fault because I refused anti hormones. I did take them for 4 months. Then stopped. I had very high Blood pressure and needed to be on Meds and my cholesterol jumped up over 100 points. as well. When they stopped my arimidex because of my chemo starting, all my issues went back to normal. I have done some research and the cognitive decline and memory loss is real. It is the same chemo brain as IVChemo. It just takes 6 months to develop.

    I won't give my ability, to think, up willing. I won't take it. I just wish my oncologist would agree it is a personal decision and quit trying to make me feel guilty. I am probably leaving this oncologist. I need one that supports my decisions

  • pabbie
    pabbie Member Posts: 70
    edited September 2022

    Hi, sorry it took me so long to reply.

    I tried all three AI's. I'm currently on tamoxifen, 10 mg. since Feb. 2022 because I was dx'd with MBC to the lymph nodes.

    I also have a new seperate cancer, lung cancer dx'd in 2021. Treated with SBRT radiation. I'm currently on chemo, taxol/carboplatin., second round out of 4.

    In 2008 when I was first dx'd, I had a lumpectomy. The surgeon went back in a second time to get clear margins. I found the rads to work and 5 years, 10 mg tamoxifen.

    Take care of yourself.

  • morkiemom
    morkiemom Member Posts: 6
    edited September 2022


    Starbaby1

    I just read your post and I feel exactly the same way, I had my mastectomy of my left breast in July and my Oncotype score was low as well (9) when I asked the oncologist what it meant she said that's if you take the treatment if not double it so 18 with no medication 6% recurrence. I tried the Letrozole for 5weeks and it was awful after 3 days off I feel myself. There is no way I can do that for 5 years. All the other damage these drugs do to you, the possibility cancer can return is with or without these medications, they do not know... I hope you are doing well and I am doing the same, they don't recommend it. I am going to feel good enjoy my family and leave it in Gods hands.

  • morkiemom
    morkiemom Member Posts: 6
    edited September 2022

    Starbaby1

    I just read your post and I feel exactly the same way, I had my mastectomy of my left breast in July and my Oncotype score was low as well (9) when I asked the oncologist what it meant she said that's if you take the treatment if not double it so 18 with no medication 6% recurrence. I tried the Letrozole for 5weeks and it was awful after 3 days off I feel myself. There is no way I can do that for 5 years. All the other damage these drugs do to you, the possibility cancer can return is with or without these medications, they do not know... I hope you are doing well and I am doing the same, they don't recommend it. I am going to feel good enjoy my family and leave it in Gods hands.