Treatment for small triple positive IDC?

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TTfan
TTfan Member Posts: 176
edited October 2014 in HER2+ (Positive) Breast Cancer

i'm confused and scared after a new diagnosis of a triple positive IDC found on screening mammogram. Preoperatively, all my medical providers talked about the aggressiveness of her2 positive cancers and forewarned me about the need for a year of herceptin. They convinced me that Herceptin was going to save my life. After the final pathology showed the tumor was only 4mm in size and 0/4 sentinel nodes, therefore a T1a stage, my kaiser doctors have said there is no need for chemo or Herceptin as survival is so good without them. By good they seem to mean about 85 to 95% five year recurrence free survival. While I know so many other women with this nasty disease have a much worse prognosis, and I am truly grateful it was caught so early, a month ago I was planning to live to 95!

I'm wondering if any of you with her2 positive T1a disease could share your decision making about chemo/Herceptin. I have read these discussion boards extensively, and see so many women with this stage cancer who are treated with chemo/Herceptin, and none so far that have chosen not to be treated. I am very confused about what to do. I may not have a choice, as it looks like Kaiser will refuse to pay for it anyway as the NCCN guidelines do not recommend it unless the tumor is >5 mm. Does 1.1 mm less really change that much about treatment?? I am looking into the ATEMPT trial out of Dana-Farber that compares T – DM1 with paclitaxel and Herceptin for early-stage tumors but would probably have to pay for much of it out-of-pocket.

Any words of experience/wisdom? And thanks for reading through this very long post!

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  • rozem
    rozem Member Posts: 1,375
    edited October 2014

    hi there. I dont know how to post a discussion link but if you go to the her2 discussion board and go back 3 pgs there is an entire discussion on her2 T1a stage. Im sure someone will come along w the link

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2014

    Here you go.   rozem - I think this is the one you were referring to:

    https://community.breastcancer.org/forum/80/topic/781897?page=9#idx_250


     

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  • TTfan
    TTfan Member Posts: 176
    edited October 2014

    thanks so much for the link, I read all the way through and it was indeed very relevant and helpful.  Since my first post, I got a second opinion from another Kaiser MO, who approved referring me to the ATTEMPT trial!  So I will definitely be getting treatment for the Her2 piece of this as well as RT and at some point an aromatase inhibitor..  If I'm assigned to the first arm (75% chance) I will get T-DM1 (Kadcycla) every three weeks for 3 months then Herceptin for 9 more months. if I'm assigned to the second treatment arm I'll get Taxane and Herceptin every week for 12 weeks followed by Herceptin only every three weeks to complete a full year.  I'm somewhat scared of what all this treatment will hold for me, but I feel more emotionally at peace having made a decision. I'm also really glad to be able to participate in solving what the right answer is for those of us with these small Her2 positive tumors.

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