Nervous about post surgery oncology visit (borderline)

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Cannec
Cannec Member Posts: 7
edited July 2015 in Chemotherapy - Before, During, and After

Tuesday I'm to meet with the oncologist to hear his recommendation - chemo or no. I've met with him twice already prior to surgery, and honestly never felt like I got much out of those visits -- a list of possible treatments scribbled on a piece of paper with no rationale or discussion as to what any of it means. He already told me to plan that I could start chemo on Tuesday. I've been told by other members of the cancer team that my oncologist doesn't mess around -- he gets you started on chemo fast, and I see that. While that can be an admirable quality I guess, I'm not about to get myself railroaded into making a swift decision on chemo especially as I think I might be borderline for actually benefiting from it.

My final pathology came back much better than I'd expected, so far as has been relayed verbally anyway. The written report wasn't yet in last week (should be now -- will be picking it up tomorrow), but I was told final pathology showed no positive nodes (yay!), and no other surprises other than the 8mm estimated IDC tumor actually turned out to be 10mm IDC tumor. Lots of DCIS on the left, one DCIS on the right. Original biopsy showed grade 2, ER+ (100%), PR+ (95%), HER2+ (7.48 FISH). My BRCA came back negative. Really, it's all rather good other than the HER2+.

From what I can tell on the NCCN website, recommendation is "consider chemo with Herceptin." Consider -- not definitely do chemo. Ugh!!!

If I need chemo, I've already decided I want *nothing* to do with taxotere, with its possible 6% risk of permanent hair loss. Taxotere was a component in one of his more recommended treatment plans. He also listed paclitaxel (Taxol) + herceptin weekly x 12 but noted it was "unlikely." No discussion as to why he felt it was unlikely, though perhaps he wasn't expecting the final pathology to look as positive as it did? I'm okay with Taxol if I have to have it, with the big side effect being neuropathy. But only if I have to have it. I'm not sure what my risk-benefit % needs to be, only that I hope to know it when I hear it.

I guess what I'm wanting to know is...can I expect to get some sort of hard, firm numbers on recurrence with or without chemo, just based on my pathology? I very much doubt any oncotype test was done, though I may ask him if he'd consider ordering it. Something tells me he may not put stock in such tests? And I've heard some don't like to consider oncotype if you're HER2+ -- that that's the big predictor anyway.

Should I push for oncotype? Considering getting a second opinion? Help!!



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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited July 2015

    Oncotype testing is only done for HER2- cancer, so that wouldn't be of much use to you. You can definitely request a second opinion, and better justification for whatever chemo regimen is recommended. It sounds like your MO thinks he knows best, and that he doesn't feel like he has to explain his recommendation for you. That's no good.

    It seems like your IDC tumor is pretty small, but HER2+ can be aggressive. No chemo is perfect, but you'll probably have to have something with the Herceptin to begin with. I had Taxol for 12 weeks, and felt pretty good on it. (I did get mild diarrhea but managed that with OTC medication.)

    But YOU have to feel comfortable with any chemo recommendation. See if you can get a second opinion before you start anything. Best wishes!

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  • Cannec
    Cannec Member Posts: 7
    edited July 2015

    That confuses me -- because I've read conflicting reports on whether HER2 status impacts the scoring adequately. When I went to the oncotype website, HER2 status wasn't even a consideration in eligibility. It said I was eligible for the test. Now maybe the HER2+ would result in a higher ranking? But high enough to outweigh the positives in the rest of the pathology? Confused!!!

    Ack -- nevermind. The actual oncotype website (I guess I wasn't correctly linked to the right one originally) says that I'm not eligible because the HER2 is positive.

    I guess second opinion it is unless he's able to somehow give me some firm numbers.

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  • debiann
    debiann Member Posts: 1,200
    edited July 2015

    Her2+ generally wins you a seat in the chemo chair, even if the tumor is on the smaller side. I think perhaps under .5mm no chemo? Not sure. But Her2+ is a more aggressive cancer and chemo plus the targeted drug Herceptin are more effective when they are combined. Chemo kills stray cancer cells that may have escaped the breast and are circulating through your body. If your tumor were bigger they would also want to add perjeta to your chemo cocktail.

    Taxol is generally used for tumors under 1cm, so yours is right on the borderline.

    After chemo you'll get anti hormone therapy too. This is a very important and effective part of your treatment to help prevent recurrance, especially since you were so highly estrogen +. 

    Chemo is no picnic, but you get through it. Good luck to you.

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