ILC and First Vist with Oncologist

Rav2017
Rav2017 Member Posts: 17
edited November 2017 in ILC (Invasive Lobular Carcinoma)

I would like help on what to expect at first visit with onc. I have ILC barely stage 2grade 2 1.8 centimeter in left breast,

Clean margins, no negative nodes, er/pr strong + her2- surgeon said excellent path report, lumpectomy was Nov 15, and I have recovered just fine...surgeon is recomending accelerated radiation and tamoxifen, but mentioned chemo because she said MO may suggest oncotype ...from what I see ILC does not respond well to chemo, and tumor is slow growing, and I am 60 years old...i need some guidance on what to expect, and what questions I should ask.....all opinions/thoughts wecome!



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  • Georgia1
    Georgia1 Member Posts: 1,321
    edited November 2017

    Hi there. I had mixed IDC/ILC but am in pretty much the same boat as you. On radiation, your options are full breast; three weeks vs seven weeks; partial breast; and IORT. I would ask your RO about all of those options even tho it sounds like your surgeon is already headed toward the shorter accelerated course. Yay for that!

    If it is an MO visit, then the conversation will focus on chemo and hormone therapy. I think you're right that chemo is an unlikely recommendation, given clean margins and ER PR +. But MOs like to hedge until they see if your insurance will pay for an Oncotype DX report, since that gives them more data. In addition to discussing that test you should discuss pros and cons, specifically side effects, of tamoxifen vs AI. Be sure to note if you have arthritis, joint or bone density issues.

    Good luck and stay in touch.


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  • Rav2017
    Rav2017 Member Posts: 17
    edited November 2017

    Thanks much for your response, I am also confused as to why I am not seeing an RO yet, but will be having that discussion on thursday also..discussing the meds, and oncotype testing....it has been such a whirlwind, that it is only in the past few days I have started to research on my own

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  • JKL2017
    JKL2017 Member Posts: 437
    edited November 2017

    Welcome, Rav2017. My diagnosis was similar to yours & my BS never mentioned the possibility of chemo. She inserted a SAVI catheter 9 days after my lumpectomy & the following week I had 10 APBI treatments. Imagine my surprise a few weeks later when, at my first appointment with my MO, she mentioned the possibility of chemo. At least you know that discussion is coming! My MO immediately ordered an Oncotype DX & (fortunately) my score of 7 took chemo off the table. I assume your MO will order the same test for you; that will give you both a much better understanding of chemo's possible benefit.

    I agree with Georgia1 regarding anti-hormonal therapy. You're a few years younger than I am but as long as you're post-menopausal I would expect your MO to suggest an AI. (My personal experience was that my BS didn't seem too interested in the AI vs Tamoxifen debate - in fact she told me I would be taking Tamoxifen - so yours may be leaving that discussion to your MO.)

    As to why you haven't seen an RO yet, perhaps your BS wants to resolve the chemo issue before sending you for a radiology consult. Oncotype results come back pretty quickly & if your number is low, you could have your first meeting with your RO right after that. You should have a lot more answers after your Thursday appointment. Keep us updated & good luck!

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  • Icietla
    Icietla Member Posts: 1,265
    edited November 2017

    Welcome, Rav2017. We are so sorry about your illness.

    First, expect questionnaires relating to your health history, present health, medicines you take, stuff like that.

    Blood draw. Blood pressure check. Weight check. Examination. Questions about symptoms.

    Because you are at increased risk for Lymphedema, remember not to have blood pressure readings nor blood draws done from your arm on the surgery side.

    You will want to ask about OncotypeDx testing. It may have been ordered already.

    If you are presently taking any OTC Vitamin or other supplements -- other than your Calcium and Vitamin D supplementation -- you should probably stop for now and not take any more until that supplementation has been cleared/approved for you by your Medical Oncologist and your Radiation Oncologist. I understand some of the Vitamins and other supplements can interact/interfere with some cancer treatments.

    If Aromatase Inhibitor treatment is recommended, you will have a DEXA Scan, and you will be directed (I believe it is an order, not a suggestion) to take at least certain minimums of Calcium and Vitamin D daily.

    Expect a bill, unless you have already met your out-of-pocket maximum.

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