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How to discuss declining endocrine therapy with your oncologist

I have decided that given my priorities, the specifics of my cancer, and medical history, I have decided not to take tamoxifen. (I did try AI's and was a train wreck).

Do any of you have advice on how to discuss refusing endocrine therapy with your oncologist in a productive way? She really has been great in every other respect, and I don't want this to strain our relationship. But she has tended to guilt-trip me whenever I have expressed doubts or reluctance about endocrine therapy, and when I have asked her about my recurrence risk and what the absolute risk reduction would be for me (instead of the 50% relative reduction number she likes to use), she has deflected or quoted general numbers for breast cancer overall. So, I am not optimistic about how this discussion will go, and am really dreading it.


  • maggie15
    maggie15 Member Posts: 770

    I started the conversation by acknowledging the statistical benefit of endocrine therapy and appreciating that my MO had the best of intentions in recommending it. I then explained how ET would adversely affect my other medical conditions and how, for a couple of them, nobody knows what the effect would be. I countered the 50% relative reduction number by referencing the 50% relative reduction of 2.5 to 5 hours of weekly exercise since I would not be able to walk 3 miles daily if my osteoarthritis and osteoporosis got worse. My MO told me that my recurrence risk would be about 12% with ET and 20% without. I let him know that I was willing to accept the extra 8% “risk" for QOL. I'm a math teacher so I understand that statistics apply to large sample sizes and can't predict what will happen to an individual. To top it all off I ended out with a rare side effect from radiation (3 in 1000 chance) which means that if I do have a recurrence the only meds I can take are AIs, SERDs and SERMs. At least I wouldn't be endocrine resistant at the start of treatment. I look at the risk from a positive standpoint, 80% chance of no recurrence, but realize neither he nor I know what the future holds. My MO told me that he would still recommend 10 years of AIs but my points were valid and I understood what I was doing. We remain on good terms and I jokingly remind him to discover new treatments I could use in the future if necessary (he's a researcher.)

    It would be good to find out your absolute risk reduction to have a better idea of your standing. If you had an Oncotype DX done it gives you a 9 year recurrence percentage when using AIs as well as the chemo benefit score. You can use that to figure your absolute risk reduction. At any rate, if something happens to you it's 100% and if it doesn't it's 0%. If I were younger (71 now) I might have made a different decision and I might end out taking AIs in the future.

    It helps if you do your homework ahead of the conversation and bring your notes to refer to. I hope it goes well. We are the ones who have to live with the side effects. Many people have completed ET and the cancer has recurred so there are no guarantees either way.

  • makingmyownchoices
    makingmyownchoices Member Posts: 11

    Thanks, this is helpful. Since I am her2+ as well oncotype/mamaprint weren't done because it is unclear how or even if those apply to triple-positive cancers. So, good numbers are hard to come by for absolute recurrence risk/absolute risk reduction in my case, but what I can come up with are pretty low.

  • ratherbesailing
    ratherbesailing Member Posts: 117

    You might want to try this online calculator to help get a more precise handle on the effect of continuing hormonal therapy. Although, as Maggie points out, they are all just aggregate statistics.

  • specialk
    specialk Member Posts: 9,211

    I believe the better calculator for those who are Her2+ is the PREDICT one, linked below. Run the numbers with hormonal therapy and without to derive the net benefit. Because this calculator asks for specifics regarding tumor size and nodal status, patient age, plus other factors - as does Lifemath - and takes into account the anti-Her2+ targeted therapy and chemotherapy regimen specifics, it is a fairly tailored look. Be sure to put your tumor size in mm, not cm, on Predict as this is a UK site. It might be useful to also look at the Lifemath calculator to see how it compares to the Predict, just for info, but I believe it does not include anti-Her2 therapies in the algorithm. I prefer to use the pictogram display for Lifemath, you can change the display by clicking on the upper right area drop down.

  • makingmyownchoices
    makingmyownchoices Member Posts: 11

    Thanks! I have looked at both of those in making my decision, did a ton of research and soul-searching.

    I am mainly asking for advice about telling your oncologist that you aren't taking their recommendation on endocrine therapy, which is tricky given how strongly oncologists generally feel about that, and mine is no exception. Maggie's post is the only real advice I have been able to find on having that discussion, even though there are quite a few ladies on here who have talked about choosing not to do endocrine therapy.

  • buzzbomb
    buzzbomb Member Posts: 45

    I am one of those who chose to stop taking tamoxifen. Family doc is fine with it, oncologist was a b*tch. She walked out of the exam room, returned and then handed me some photocopied tamoxifen papers and then left….refused to talk with me about it. Sorry, I can’t help you. I will see my surgeon next week and we will have a great chat about t as she’s willing to listen to my concerns

  • alicebastable
    alicebastable Member Posts: 1,934

    I took Tamoxifen for about 9 or 10 months and then stopped because I developed a fatty liver. I figured my chances of damaging my old liver were probably significantly higher than recurrence or spread chances. I told my oncologist at the next appointment (which was on the 3-month schedule) and I think I just said, "Oh, I'm not taking them," and explained about the liver. She reminded me of the numbers, but she didn't do anything except frown - which I've learned over time she does randomly, it could be that she's translating something in her head since English isn't her first language. My surgery was in 2018 and I stopped the pills in 2019. She's brought it up a few times, but in a nice way. I see her every six months and she does lots of blood work plus asks my PCP to run certain tests, and she schedules tests like scans or ultrasounds if I seem achy or have any possible problems. It wasn't anything I needed a script for, I just told her.

  • makingmyownchoices
    makingmyownchoices Member Posts: 11

    Thanks! it's helpful and heartening to hear that some oncologists do take this OK.

  • salamandra
    salamandra Member Posts: 727

    Some oncologists don't think they have much purpose if they're not supervising your medication.

    Consider letting her know that you appreciate all the info she's given you and you decided not to take the meds. Then pose it to her as a question - 'should I keep seeing you, or should I just get scanning ordered by my regular doctor?' Even if she sends you back to your family doctor, you can check with her about when you should contact her if questions or new symptoms come up.

    This approach lets her know that you recognize and respect her expertise (you are asking for her advice about best follow-up) but that your decision is made and her only choice is whether she supports you without the endocrine therapy or doesn't support you at all.

    This is important because I think doctors feel guilt and anxiety if they think there was maybe more they could have done to persuade a patient to go with the treatment they feel is best. Just take that off the table for her.

    If she doesn't think there is a helpful role for her to play for you if you're not taking the meds, then she's probably right. If for no other reason then that her belief will make it so. Then you can start to look for a different oncologist or work with your family doctor on making sure you're getting the follow-up scanning you need.

    Consider bringing a man to the discussion with you. Research shows that women are generally taken more seriously by doctors if they are perceived to be validated/supported by a man (even by women doctors, though the effect is smaller). That man can be anybody if you don't have a male partner. It can be a sibling, it can be your son, it can be someone else's sibling, father, husband, or son. This is infuriating, but it can help. It might also make you feel better about not going into it alone.

    Good luck with your plan!

  • alicebastable
    alicebastable Member Posts: 1,934

    My oncologist sees patients who take the anti-hormonals every three months. She sees patients like me, who don't take them, every six months, because the bloodwork to check the hormonal levels doesn't need to be tracked closely. I'm not sure if or when that will change. My BS mentioned that this year, my fifth, will be my last visit with her unless there's a problem. I asked her about the oncologist, and she said the one I go to doesn't let go unless her schedule gets too crowded or the patient stops the appointments.

  • makingmyownchoices
    makingmyownchoices Member Posts: 11

    That approach makes a lot of sense salamandra, and I think I'm leaning towards that. It may well go down to bi-yearly checkups with my onc., as my BS manages the scans, and since I have to take time off work, 2 less dr. visits a year would suit me just fine.

    I'm afraid I don't have any men I am close enough with and would actually be helpful - My father is a loose cannon in these situations, and you never know what he will say - equal odds he is actually supportive, goes all angry old man on her, or winds up agreeing with her (ROTFL)...... Fortunately, my onc. takes me more seriously than most male dr's I have encountered. I was already planing to bring my mother, so I will have strong backup.

  • VioletKali
    VioletKali Member Posts: 97

    I tried an AI and wasn't impressed. I was 32, developed trigger finger and my knees locked up. Prior to cancer I was running 20 to 30 miles a week, and this was preventing me from being active and feeling well.

    I did not do well with tamoxifen.

    One New oncologist I saw that was amazing told me about tamoxifen's older cousin Toremifene citrate, Fareston. She told me that it has a better safety profile and is more tolerated impatience, she let me know that if I wanted to give it a try we could, but if that I decided to decline all together she understood.

    I had ZERO side effects from it and loved it, but she ended up going back home due to a family emergency in israel, so when I saw a new oncologist at the practice they didn't like that drug and refused to refill it for me.

    Anyway, long story short, I'm an 8 and 1/2-year survivor and I took hormonal therapy for a total of 2 years and then quit.

    The way I look at it if cancer wants to come back, if it's going to come back, then it will come back regardless of what I do. I believe this because I've seen so many people do every standard of care perfectly and then have a recurrence, I decided that I'd rather live my life in peace and have zero side effects.

    I'll never do chemo again, due to the side effects, so should I have a recurrence then I would seek the non chemo options.

  • makingmyownchoices
    makingmyownchoices Member Posts: 11

    Thanks! I will have to look into that drug. I am so sorry you had so much trouble with the tamoxifen.