Anyone decline chemo?
Hi! I will give a little background. I’m 49 y/o and was dx with stage 1a Invasive Lobular Ca Er/Pr + and HER2-, node negative. I had a lumpectomy with clear margins. I am perimenopausal. My initial treatment plan by team was radiation with 5 years of hormone blockers. I was surprised by oncologist when I went to discuss starting radiation, that he wanted to do an EndoPredict test on my tumor. The range is 1-6. A 3.3 and lower means there’s likely no chemo benefit. A 3.4 and higher means there’s some chemo benefit. My score is 3.4, so my oncologist recommends chemo. My likelihood of distal reoccurrence without chemo is 10%. If I take the chemo, it decreases by 4%. I told him those numbers just aren’t high enough for me. He said if I was a little older or in menopause, he wouldn’t recommend chemo. I already had plans to have my ovaries removed, but he said this won’t matter. My question is, has anyone been in a gray area like this? I’m really struggling with deciding if the chemo is worth that 4%.
Comments
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kll1975,
I have not been in a similar position but with respect to doctors treatment recommendations, you always have a choice about what to do. I think the bottom line is this; will you feel bad/guilty if you have a recurrence? Even with chemo or any other bc treatments, there are simply no guarantees that you won’t recur so essentially you are playing the odds. Those stats, which are historical, can tell you what percentage might recur but they can’t tell you, individually, who those people will be i.e. they are not individually predictive.
We have members refuse chemo, hormonal therapy, radiation, etc. It is always your choice and as long as you understand the risks, which may or may not happen, then you need to do what is best for you. Take care0 -
Hi @kll1975. I’m so sorry you are having to face these difficult decisions!! Welcome here and hopefully some ILC members will chime in. There is a whole category for ILC and maybe you already found these threads …
One question … was that 10% risk of recurrence if you did absolutely no further treatment (aside from your surgery and radiation)? And if you did hormone treatment without chemotherapy, did your oncologist have a percentage for that? I wish there was a better way to predict and know for sure. I’m thinking of you as you face this tough decision. Wishing you all the best!!!0 -
The 10% risk was with hormone therapy and no chemo. If I add the chemo, it decreases by 4%.
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I was in a similar situation. Same numbers. My er+ was 95% pr was pretty high too. I even had micromets in 2 lymph nodes. I switched drs and the new one said I was very smart to decline chemo.
Fast forward 9 yrs and I have a bone met. Now in remission but recently dx with TNBC. No regrets from me.
You have to do what's right for you and don't let anybody make you feel guilty.
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kll1975,
I have chosen not to get chemo—twice! I was first diagnosed in 2009 at age 48 with stage 1 IDC, 1.5 cm, HR+, HER2-, no lymph nodes involved, clear margins. I had a bi-lateral mastectomy. I then had the Oncotype DX test on my tumor. My score was 19. At that time 0-18 was considered low—no chemo recommended. 19-26 was mid-range and they didn't have enough data to give definitive advice on chemo. Higher than 26 and chemo was recommended. My oncologist suggested I get it, but left it up to me. I chose not to get it. However, I did get radiation therapy. Fast-forward 13 years: I find the study where they have finally determined that mid-range recommendation. Guess what? For my age at diagnosis and my score of 19, chemo is NOT recommended. Studies change and thinking changes. Fast-forward to May of 2024: I am diagnosed with Stage IV MBC that is found in my sternum. While waiting to get in to see an oncologist (we moved across the country 7 years ago, so I was starting over with a new team of doctors), I tried various alternative treatments. My diagnosis this time was HR+ and HER2+. Of course, when I finally got an appointment with an oncologist, she recommended chemo, trastuzumab, pertuzumab, anastrozole, and Zometa—starting all of them at the same time. I chose not to get chemo, but said I would try the t&p combo as well as the anastrozole. No Zometa. I wanted to wait until I got another PET CT scan to determine whether or not to do chemo or Zometa. After 4 t&p infusions (every 3 weeks) I had my second PET CT scan—NED! Of course, my oncologist recommends that I continue the t&p infusions. I have chosen to "take a break" from all treatment for 3 months, get another PET CT scan, and see where I am before I do any more treatment.
I know my body and although I am very healthy, I would not do well with chemo. (The t&p infusions started with mild side effects that had been increasing with each treatment.) For me it was the right choice to avoid chemo. I don't regret my decision the first time and not the second time either.
kll1975, I agree with Gail that "You have to do what's right for you and don't let anybody make you feel guilty." We are all on very different paths and must decide what works best for us as individuals. Best of luck to you!
LLN
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