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To Chemo or not to chemo

Hi, I'm Bonnie R K.

I’m 46, stage 1a invasive breast cancer, 1 tumor less than 2cm, ER+ HER2- had a lumpectomy with clear margins and clear lymph’s. All genetic testing was clear – no mutations. Oncotype score came back at 22 though, which puts me in a gray area for chemo. I’m at the point of decision making. Anyone have similar cancer and willing to share thoughts, decisions, factors that influenced your decision, outcomes, etc? I’m struggling with putting my body thru chemo for what feels like a low risk recurrence but my doctor is strongly suggesting I consider doing chemo to further minimize my risk.

  • Post #1
  • Tue Feb 26, 2019
I'm Michele5382, and I'm a survivor of Stage 2 Breast Cancer

This sounds close to what I’ve been dealing with. I have Invasive Ductal Carcinoma ER+ HER 2-. I’m Stage 2, tumor grade 3, had lumpectomy and two lymph nodes removed, clear margins. My oncotype showed 23% chance of recurrence without chemo and I believe it’s 9% with chemo. The thought of chemo and radiation is terrifying to me, however, my oncologist and breast surgeon believe it’s the best thing for me. If it recurs, then it’s metastatic and then it’s only going to be treatable. I start chemo next Tuesday.

  • Post #2
  • Sun Apr 21, 2019
Hi, I'm BARBARA A S.

My doctors have never provided me with guidance. They give you patient educational materials and tell you to make your own decision. No doctor wants to take any responsibility anymore, especially if they make the wrong decision. My tumor was very similar to yours, my Oncotype was higher and I rejected chemo. Have done a great deal of research and have learned how often chemo fails. Remember – chemo does not kill cancer. It damages DNA so it can’t replicate and produce more cells, healthy cells and diseased cells. I fortunately found another doctor for a second opinion who pushed the Oncotype test aside, said my recurrence risk was 10%, you can never go below 5% recurrence risk and no one submits to chemo to reduce the recurrence risk by 5 percentage points. Clean, clear, easy to understand advice. I, however, am at the stage for hormone therapy and I cannot tolerate it. I am very sensitive to medicine and I knew my body could not withstand chemo. I never expected to find out that I can’t withstand hormone treatment. I am researching that, too, and finding out a lot of not so favorable information on hormone therapy as well.

  • Post #3
  • Mon Aug 12, 2019
Hi, I'm CYNTHIA S.

I agree on doing your own research. I think it at least gives you better questions to ask—or perhaps actually questions. It’s so difficult to know WHAT to ask when you don’t know what to ask. I also know that yes some doctors won’t tell you specifics for fear of ______ (fill in the blank), but then maybe it’s time for a second opinion. Asking people on this site who’ve been involved in specifics can widen your knowledge scope. I chuckle with post#2 and being handed a sheaf of “educational materials”. That’s them checking off the (legal) “Patient Educated” box. I was handed about 10+ pages for lung cancer. When I had questions and asked them, then they said I knew everything I needed to know and that they had answered ALL my questions. I hadn’t even met the people who were listed as go-to people to ask questions of. Is this really medicine? But if you come in to an appointment saying you’ve looked online they go bananas. So sad and ridiculous simultaneously.

  • Post #4
  • Sun Aug 18, 2019
Hi, I'm BARBARA A S.

Take a look at this website, input your information and discuss the result with your doctor. https://breast.predict.nhs.uk/tool
This is a tool to show you the change in your survival given your data and whether you had surgery and/or chemo and/or estrogen therapy. I found the info to be incredibly interesting.

  • Post #5
  • Sun Aug 18, 2019
Hi, I'm LKO47

The predict tool was what my oncologist used in discussing options. I opted not to go for oncotype, just radiation and hormone therapy. I’m curious what poster #1 decided to do. I was already having great anxiety deciding on treatment (my cancer was small and stage 1a), and if the onco score came back inconclusive (most likely in my case) I’d be in the same situation. I’m 73, live alone, no relatives in the state and pretty much in pre-vaccine covid isolation. The predict tool showed that I’d already derived the largest benefit from surgery. Hormone therapy added 1.3% benefit after 10 years and chemo only an additional 0.6 %.

I have to agree with the “it’s your decision” complaint, although my doctors gave me the info in person rather than a sheaf of papers. I complained to my medical oncologist and in the follow-up survey from the clinic. Patients are not doctors or researchers and we’re at our most anxious and stressed at the very time we’re supposed to be deciding all this. Seeing as nearly every provider, including nurses, voiced this obvious disclaimer, I’m assuming the health system’s lawyers are behind it.

  • Post #6
  • Fri Feb 19, 2021

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