multifocal tumors with different profiles

Options
persnickety70
persnickety70 Member Posts: 35
edited March 2018 in Just Diagnosed

Hi everyone,

First post here, and I'm sure I'm not the only one who's been through this specific situation, so hoping for a little perspective "from the other side"

I am 47. Went in for routine mammogram in November, biopsy in December (after additional views). Initially told it was high grade DCIS, but someone didn't order hormone receptors. When they went back and recut the block, they found 2.1 mm of invasive CA. This came back ER+/PR+, Ki 21-30%, and HER2 indeterminate, but + by FISH. Next came an MRI, which showed a suspicious area 7 mm from the biopsy clip, they thought the clip had just moved. Had partial mastectomy and sentinel node, showed 6 mm invasive CA in background of atypical ductal hyperplasia, no remaining CA near clip, and this tumor is HER2 negative. 2 sentinel nodes were negative. They sent off for Oncotype, it came back at 25. Now my oncologist has sent off a Mammoprint, but had me go ahead and get a port as she said I would definitely need a year of Herceptin, with or without docetaxol. I will possibly get Perjeta and Carboplatin as well. Oncotype says my recurrence in 10 years is 17% without chemo. Looks like it is 7-10% with chemo, but the chemo used in these studies is not what they are now using, so it might be better. I am just afraid of not doing enough because I don't want the toxic chemo, vs overtreating something that is low risk to begin with.

· Share on FacebookShare on Twitter

Comments

  • Georgia1
    Georgia1 Member Posts: 1,321
    edited February 2018

    Hi there and sorry you are going through this. Is the chemo recommendation based on the HER2 status? And do you know your ER and PR numerical scores? Has anyone discussed Tamoxifen with you? I'm sorry to ask so many questions but an Oncotype score of 25 is still intermediate, so it seems to me you should get a second opinion on the chemo.

    I had two tumors with different profiles as well (one ILC and one ILC/IDC mixed) but both were HER - and strongly (95 percent) ER+. My Oncotype score came back at 18 so it was easier for me to choose not to do chemo. My MO said she considered a score of 24/25 still the gray area for me.

    · Share on FacebookShare on Twitter
  • Shellsatthebeach
    Shellsatthebeach Member Posts: 316
    edited February 2018

    I'm not sure why they would give you Herceptin if you are Her2 negative.

    · Share on FacebookShare on Twitter
  • persnickety70
    persnickety70 Member Posts: 35
    edited February 2018

    I had a 2.1 mm HER2+ tumor and a 6 mm HER2 negative tumor. Both ER/PR +. It sucks to be in the gray area. The Herceptin is for the HER2+ tumor, which was high grade. She seems to be leaning to at least docetaxel for both tumors. ER is 90%+, PR 70%+

    · Share on FacebookShare on Twitter
  • Shellsatthebeach
    Shellsatthebeach Member Posts: 316
    edited February 2018

    I see. I missed the first part where you had said the Fish tested positive for Her2. I too had several tumors. The biopsy they took said Her2 negative, but after surgery I had tested positive. I'm not really sure if it was from different tumors but my guess is yes. I'm getting the Herceptin too. They will always give Herceptin with a tumor that test Her2 positive. There is also a possibility my Her2 status changed after chemo.

    · Share on FacebookShare on Twitter
  • Georgia1
    Georgia1 Member Posts: 1,321
    edited February 2018

    Persnickity, thanks for the additional info. You're right, it really does suck. I can only suggest that you get a second opinion; doing Herceptin only may well be a reasonable choice. I got a second opinion on everything and it made me feel a lot better.

    · Share on FacebookShare on Twitter
  • Meow13
    Meow13 Member Posts: 4,859
    edited February 2018

    I would get a second opinion as well.

    · Share on FacebookShare on Twitter
  • persnickety70
    persnickety70 Member Posts: 35
    edited February 2018

    Mammaprint just came back today. High risk. Recurrence at 30% in next 5 years with just tamoxifen and radiation. I know these tests are not infallible, but it certainly makes it seem like chemo is the right decision. I meet with my MO on Wednesday. Thanks for the advice. I have been terrified since my biopsy results came back. It has just seemed that there has been a nasty surprise around each corner with this cancer.

    · Share on FacebookShare on Twitter
  • Georgia1
    Georgia1 Member Posts: 1,321
    edited February 2018

    So sorry, and indeed it does feel that way. Let us know how we can help - there is a "starting chemo in March" board starting that may be a good place for you to get moral support.

    · Share on FacebookShare on Twitter
  • Maggie7272
    Maggie7272 Member Posts: 11
    edited March 2018

    Hi all,

    I'm just jumping in because I too am recently diagnosed. Been through BC with my daughter so knew a lot about BC going in. I am multifocal, HR+PR+ waiting on FISH. Had MRI showing a lymph node 4cm. Waiting to do Pet scan. Anyone else have a large node that didn't spread beyond to the body? My surgeon said it's possible so freaking me out.

    Persnickery it's tough to decide on chemo. I read that you can have herceptin without.

    · Share on FacebookShare on Twitter
  • Maggie7272
    Maggie7272 Member Posts: 11
    edited March 2018

    Hi all,

    I'm just jumping in because I too am recently diagnosed. Been through BC with my daughter so knew a lot about BC going in. I am multifocal, HR+PR+ waiting on FISH. Had MRI showing a lymph node 4cm. Waiting to do Pet scan. Anyone else have a large node that didn't spread beyond to the body? My surgeon said it's possible so freaking me out.

    Persnickery it's tough to decide on chemo. I read that you can have herceptin without.

    · Share on FacebookShare on Twitter
  • persnickety70
    persnickety70 Member Posts: 35
    edited March 2018

    Maggie,

    Hope you get good news on your PET scan. It is crazy how you can see a small node with micrometases that will have spread, and a larger node that has not....I am a family practice doctor. Obviously, cancer is not my area of expertise, but I have taken care of a fair number of patients with it. It has all become so much more personal since my own diagnosis.

    I was just reading about fasting mimicking diets. Has anyone else read about these? Search chemolieve. The science seems to be sound. I am thinking about trying a fasting protocol prior to chemo. Anything that can make treatment more effective and protect healthy cells sounds good to me.

    · Share on FacebookShare on Twitter

Categories