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When you don't fit the studies and your doctors disagree

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peggy_m
peggy_m Member Posts: 3

Hi all. I'm recently diagnosed (March) with regional recurrence in right axillary nodes, 17 years after double mastectomy/chemo/tamoxifen for IDC right side (with negative sentinel node biopsy). Surgery in April removed 4 positive nodes and 4 negative nodes. Cancer is again ER+, PR+, HER2 negative (but this time HER2 low). Mammaprint High Risk 1/Luminal B. Doing Femara and will do radiation. Beyond that, no agreement. I've gotten opinions from three oncologists (with more weighing in via tumor boards). Some say it's recurrence, some say it's a new primary. Some say just Femara and radiation (seems risky with 4 positive nodes). Some say dd AC-T (but I did 3 rounds of A the first time and there is concern over cumulative dose for heart damage). Some say CMF. Some say chemo plus Verzenio. Some say just Verzenio. How do you make a choice when the doctors are so all over the place?

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  • maggie15
    maggie15 Member Posts: 999
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    Hi @peggy_m, It's difficult when three different oncologists with the input of tumor boards disagree on treatment. If there isn't one that you trust more because of experience with unusual cases you have to make the decision. Since the responsibility is on you, do whatever would leave you without regret if by some chance things didn't work out.

    It would be nice to know if this were a recurrence or new primary but that is not so important in the outcome. You are doing Femara and radiation since all agree on that but you said that you feel doing nothing else would be risky. You have expressed concern about potential cardiac damage from additional AC-T. That leaves you with Verzenio or Verzenio plus CMF. Would you regret not doing the chemo if there were a distant recurrence later or do you feel the chemo SEs might not be worth it?

    I haven't been in this same situation but have had to balance comorbidities and advice from other subspecialty doctors with what oncologists recommend. You feel the burden of responsibility since you are the ultimate decision maker but that also gives you some power in that you can choose what will give you the most peace of mind. I have recently run into a potential recurrence glitch but I still feel that I made the best decision for my situation at the time. Good luck with choosing what you feel is best for you.