To have Chemo or Not

Indianarose
Indianarose Member Posts: 11
edited March 2017 in ILC (Invasive Lobular Carcinoma)

I am 66 and will be 67 in June. I was diagnosed with Grade 2 Invasive Ductal Carcinoma. Tumor has removed on 2/2/17 and was 1.3 cm Margins clear and all lymph nodes were clear. Everything sounded very positive (just hormone therapy) until Oncotype came back at 34. Chemo treatment is being advised. I every 3 weeks for 12 weeks, then 25 radiation and then hormone therapy. At my age I am really reluctant to have the Chemo, but with small Grandchildren do not want to risk it coming back, which I understand there is no guarantee of that regardless.

I had a benign tumor removed from the same breast 26 years ago and the Gail Mode risk assessment tool said that my risk for Invasive Breast Cancer over the next 5 years was 2.5% which at that time was apparently high. Not sure if that has any bearing on my situation today

My sister had the same thing about 6 years ago. Her Oncotype test came back at 35. The same treatment was recommended for her, but she opted not to do Chemo. So far, so good.

I am now trying to decide if Chemo and radiation with Hormone therapy is the path I should take, or no radiation at all since I had an interop radiation treatment at the time of surgery. OR no Chemo or radiation and just hormone therapy. I do have appt for second opinion this week, but feel they are going to tell me the same thing, since everyone says treatment weighs heavily on Oncotype test score.

Any input that you can give me as to the risks and benefits at my age and with my Oncotype test score is appreciated. I am so confused and frustrated at this point.

Thanks

Rose

· Share on FacebookShare on Twitter

Comments

  • Lily55
    Lily55 Member Posts: 3,534
    edited March 2017

    Hi, sorry you are here......you might get more accurate answers if you post this in the Ductal Carcinoma fórum, I can´t offer any opinión as I had ILC, good luck

    · Share on FacebookShare on Twitter
  • Luckynumber47
    Luckynumber47 Member Posts: 397
    edited March 2017

    Hi Rose,

    So sorry you are going through this. Such a hard decision. I probably don't know much more than you do but I had a few thoughts. Your Oncotype score came with a graph that shows how likely it is that the cancer could come back - a percentage with only hormone blocker and a slightly lower percentage if you also add in chemo. When you go for your second opinion ask you dr to discuss those percentages with you. What do they actually mean for you. Is the extra 3% (or what your actual percentage is) worth it to you? Do you have any other health issues that might be affected by chemo? How extreme is the chemo regimen they're recommending for you? Would a milder one be just as good.

    The good news is that the chemo benefits likely outweigh the risks in your case and the chemo is more likely to be effective on your type of tumor

    I've been told endocrine therapy (AIs) helps reduce recurrance rates by 50%, chemo by 3% and an exercise program by 40%. I'm focusing on the AI and exercise and hoping for the best.

    · Share on FacebookShare on Twitter
  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited March 2017

    I agree with Luckynumber47 that you would benefit from additional discussion of the results of the report and your risk / benefit profile. Please request a copy of your Oncotype report for your review and records.

    The node-negative ("N0") Oncotype test report provides information regarding the 10-year risk of distant recurrence after 5-years tamoxifen associated with your particular Recurrence Score based on the results of a clinical trial in patients receiving Tamoxifen alone. This is the 10-year risk of being diagnosed with incurable metastatic breast cancer if tamoxifen alone (5 years of treatment) is received.

    The node-negative Oncotype report also contains some information about the potential risk reduction benefit of added chemotherapy with your particular Recurrence Score (from a different study comparing the 10-year risk of distant recurrence in patients who received Tamoxifen alone versus patients who received Tamoxifen plus chemotherapy). Ask the medical oncologist to review the report with you.

    If you have questions about radiation following intraoperative treatment, please also meet with a Radiation Oncologist.

    BarredOwl

    · Share on FacebookShare on Twitter
  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited March 2017

    Hi Luckynumber47:

    Re: "I've been told endocrine therapy (AIs) helps reduce recurrance rates by 50%, chemo by 3% and an exercise program by 40%."

    If you are discussing the relative risk reduction benefit of chemotherapy, then is that "3%" a typo?

    A 2016 ASCO guideline states:

    "An overview by the Early Breast Cancer Trialists Collaborative Group suggested that the reduction of risk of recurrence (ROR) with adjuvant chemotherapy is at least 30%."

    BarredOwl

    · Share on FacebookShare on Twitter
  • Indianarose
    Indianarose Member Posts: 11
    edited March 2017

    Thanks so much for all of the feedback. I feel a little better prepared when I go for the second opinion tomorrow.

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2017

    Echoing Lily55, ILC is a bit of a different animal than IDC. The IDC ladies can also help you (not like we can't) with advice. ILC tends not to be so responsive to chemo so many of us ILC'rs did, and are doing different things other than chemo....I went for chemo because I had + nodes and wanted everything thrown at any residual cells that might have been hiding somewhere. My philosophy was that if it did come back, I wanted to know I did everything I possibly could, avoiding the "I wonder if I should have.../why didn't I do that..."? I agreed to chemo with little to no reservation because of my status. My oncologist agreed. I did fine with chemo, although I did lose weight and my hair. Unfortunately the weight grew back, but fortunately so did the hair.

    I'm sorry you're here, but we are all your sisters, ILC or IDC or other, and are here for you no matter what.

    Claire in AZ

    · Share on FacebookShare on Twitter
  • vlnrph
    vlnrph Member Posts: 1,632
    edited March 2017

    Hi rose - wondering where you are in Indiana. I went to Purdue!

    Be sure to take someone with you to help listen at your appointment and/or ask if you can record the discussion. Good idea on getting a second opinion

    · Share on FacebookShare on Twitter

Categories