When you don't fit the studies and your doctors disagree
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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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.
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@maggie15 (maybe a fellow Margaret?), thank you so much for this. (I'm sorry I didn't respond earlier; I forgot how this site works!) You described it beautifully — it's about moving forward without regret. At the moment I'm leaning toward just Verzenio. My thinking is that if my cancer comes back, I'll never know exactly why. But if I come out of chemo (chemo that many doctors recommended against) with a permanent problem (heart, bad neuropathy, leukemia, etc.) I would know I did that to myself and regret it. I've read that if chemo wouldn't offer a clinically proven absolute benefit of at least 5%, it's not worth the risks. And in my case that proven benefit seems to be lacking. Thank you again for your thoughts; sending hugs and healthy wishes.
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Peggy,
I’m in agreement with Maggie’s opinion. I too faced a choice, though my situation was very different as I was stage IV de novo. My primary mo recommended a tx plan; AI plus rads to my bone met. My second opinion mo said that while that plan was acceptable, she also put chemo on the table. While I know some people want to “throw everything at it”, I decided to go with rads/AI. An important consideration was whether I would have regrets about progression if I didn’t do chemo. My answer? No, I wanted to try the rads/AI first as chemo would always be there. 13 years later, I am still stage IV with no progression . This is highly unusual and was not foreseeable but I’m glad my decision making process lead me down that path. If it hadn’t? Well, I could have lived with my decision without regrets.
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Hi @exbrnxgrl
So glad your choice worked out for you; that is wonderful. Continued good health!
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