ILC Triple Negative and Chemotherapy

hartrish
hartrish Member Posts: 380
edited June 2015 in ILC (Invasive Lobular Carcinoma)

Hi Everyone

I found out today that one of my tumors is triple negative and was given an option for two chemotherapy regimens: TC or AC+T. My tumor was Stage 1c, 1.2 cm, node negative with wide margins but I did have lymph/vascular invasion present. Can any one share research on which chemotherapy regimen is most effective (TC vs AC+T) for ILC node negative tumors? My oncotype score was 36.

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  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited June 2015

    Hi hartrish......This is a hard question for sure and depends on your oncologist preference. To my knowledge, there is no head-to-head trials that compare these two...at least I haven't found one. When I decided to do chemo (onco=24), I asked my MO to make sure we didn't "just pi$$ my cancer off". She is part of the US Oncology Network and they do a lot of trials. She said that these two protocols are equivalent, however AC+T has more risk for heart damage and TC has more risk for neuropathy. Side effects vary among individuals so it's hard to say which one is kinder. I had 6 cycles of TC and worked throughout (but I had a lot of support at home and no little kiddos to care for). Ask your oncologist what they recommend and why...why is the most important question. And good luck...one thing I know is that you have a lot of choices and none of them are easy.

    Love, MsP

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  • jarris77
    jarris77 Member Posts: 100
    edited June 2015

    I don'know which one is better, but I also had triple negative, 1,7 cm. My oncologist didn't offer me a choice. I had TC. One every 3 weeks (total of 4). Luckily, I had very few side effects. Best wishes.

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited June 2015

    I think triple negative ILC must be quite rare. Adriamycin is not called the 'red devil' for no reason. I was relieved when I learned it would not be required for my treatment. However, if hartrish is young and very healthy otherwise, I would certainly consider it in her situation.

    A second opinion from an academic medical center might be helpful...

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  • hartrish
    hartrish Member Posts: 380
    edited June 2015

    thanks MsP for the feedback. My oncologist really laid out the two options. The ACT regimen only increases my survival by 1% by using Adjuvantonline, predict, and cancermath calculatorsso not sure it is worth the possible heart damage. There is a clinical trial going on now comparing the TC and ACT regimen. Results won't be in time for my decision. Looks like from your signature line that you decided on the TC regimen. Can you tell me thoughts on your decision? I know it is my decision but helps with hearing how others decided.

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  • hartrish
    hartrish Member Posts: 380
    edited June 2015

    thank you jarris77. Our tumors are pretty close it looks like. Appreciate your response.

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  • hartrish
    hartrish Member Posts: 380
    edited June 2015

    thanks for your reply vlnrph. I am 58 and in good health. The predictor calculators (adjuvant online. Predict. Cancer ath) only showed a 1% increase survival with ACT instead of TC so not sure it is worth the possible heart damage. The whole risk versus benefit thing. That is my rational side. My emotional side says hit it with the most powerful regimen. A lot to think about and decide

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  • treelilac
    treelilac Member Posts: 245
    edited June 2015

    hartrish: Why do you have an Oncotype score if you're triple negative? Is it because you have borderline ER/PR+? I'm just curious.

    I face the same question too. My doctors initially thought my tumor was >3 cm so I was offered dd AC + T. After MX, they now offer either no chemo or CT (4 cycles) if I insist. You can imagine I also searched high and low to help make a decision. When researchers today are more interested in platinum-based reagents, people seem to forget all about studying old CT. :) I'm seeing the second opinion doctor tomorrow. I'll post what she says.

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  • hartrish
    hartrish Member Posts: 380
    edited June 2015

    treelilic. My tumor was initially tested twice in the hospital lab. 1st: 2% Er positive, PR neg, 2nd time: 10% Er pos, pr negative. Sent out to oncotype test and came back triple negative. Go figure. So onc said treat it as a triple negative.

    I had two tumors, one in each breast. The other tumor is ILC Er pos pr pos both greater than 96% so will be on femara after chemo as well

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  • hartrish
    hartrish Member Posts: 380
    edited June 2015

    treeliliac. So you decided on AC +T instead of TC? If so, what helped you make that decision?

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  • treelilac
    treelilac Member Posts: 245
    edited June 2015

    Currently I'm more inclined to TC. My MO actually tries to dissuade me. The signature portion was created when the site asked if I planed on or was going through chemo so I answered based on what I knew (there are no dates on the info). I'll update once a final decision is made. :)

    The common sense seems to point to aggressive treatments when the diagnosis is TN. But I begin to think there are more targeted therapies under development. Maybe I'll benefit from them if cancer does come back later. If I can decrease the the possibility of long-term SE by seeking less aggressive chemo, I'll be happy to take the risk.

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  • anotherNYCGirl
    anotherNYCGirl Member Posts: 1,033
    edited June 2015

    Hi

    I have been trying to follow along with the posts!

    I was not given a choice, my onc opted for AC+T. I have a heart murmur since birth, pulmonic stenosis, and had to go for an echo cardio before starting treatment. After one combo dose of AC, the onc decided to split the doses, so I had 3 more C, then 3 of A, then 4 dd taxol.

    Seemed ok that way.

    Good luck with your decision!

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  • hartrish
    hartrish Member Posts: 380
    edited June 2015

    thank you anotherNYGirl. I have put a call into onc office for her to answer a few questions. I will be glad when I make a final decision and move on.

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  • treelilac
    treelilac Member Posts: 245
    edited June 2015

    I went to my second-opinion facility and they told me they had very different pathology read-out than the one my first oncologist gave me. I'll post the story in a different thread since they now say I might be ER/PR + (40%). But there is one thing I feel I can contribute here: they seem to follow the NCCN decision tree as well (that's what my first MO uses). :)

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