High Grade, Low Risk?

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Yuuki
Yuuki Member Posts: 47
edited January 2017 in IDC (Invasive Ductal Carcinoma)

Hello Everyone,

I am a new poster but have spent some time on these boards trying to get clarity on my weird situation. I am wondering if there's anyone out there with my mix of circumstances.

I was diagnosed in 2000 with high grade DCIS and opted for a mastectomy, followed by a prophylactic mastectomy because I was trying to start a family and Tamoxifen was not an option. Nearly 16 years, four pregnancies, two miscarriages and two wonderful kids later, I was diagnosed with a 12mm IDC that appears - though nothing is certain - to be a new primary that started in the last shred of breast tissue left after mastectomy (nope, not BRCA-positive).

It's an odd beast. 9/9 Bloom-Richardson, high grade, KI-67 3 (not a typo), ER+++, PR++, Her2- (FISH), Mammaprint low risk. The studies I see seem to indicate this is possible but study cohorts of hundreds seem to narrow down to N= 2 for these circumstances. Add to that the DCIS and mastectomies, and I am feeling a bit like a creature withthree heads.

Just wondering if there are other survivors out there with this type of discordance in the tumor pathology/biology. Short of that, does anyone know of studies that address this?

Thank you all - this is a great community.

Yuuki

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Comments

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited January 2017
    Yuuki, I can't address your questions; I'm sure someone will be along soon, however, with some insights to share. I do want to welcome you to the community and lend my support as you wade into this morass. I'm sorry about your new (oddball) primary and hope we can provide support as you deal with this.
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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited January 2017

    Mine is not as discordant, but grade 2, ki67 22%, oncotype 3. I did call the pathology dept at my hospital and the chief of staff pulled my slides and took a second look re: grade and came up with the same grade. Still wish I'd sent it to Johns Hopkins for a second look.

    It is hard to believe the beast is back for you. However I am so thrilled at the wonderful like you'vebuilt since the first appearance. Hopefully the new one is easily treated and you'll be back on track soon.

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  • stephilosphy00
    stephilosphy00 Member Posts: 386
    edited January 2017

    Mine is grade 3 but ki67 is only 7.5. I believe mine is somewhat slow-growing because I have had the lump for a long time.

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  • Yuuki
    Yuuki Member Posts: 47
    edited January 2017

    stephilosophy,

    So sorry to hear you were diagnosed at such a young age - I was 34 the first time. I see by your profile you are doing neoadjuvant chemo - will you be able to do Mammaprint, Oncotype, or anything similar, or is that no longer possible? I think the combination of the low risk Mammaprint and the low Ki-67 is making my medical team think this won't behave like a high grade tumor, but there aren't many people like us to study. I lost the nodes the first time around, so no chance of looking at those.

    I keep trying to make sense of the out-of-balance nature of the data, but I'm not sure there's sense to be made. Wishing you the best of luck with the treatment and recovery!

    Yuuki

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  • Yuuki
    Yuuki Member Posts: 47
    edited January 2017

    farmerlucy,

    Thank you so much for the kind words and encouragement. You'd think with all the information they can drag out of a tiny piece of tissue that it would all add up, but sometimes it just doesn't. I am thinking of the Mammaprint as my "second opinion" on the pathology and looking at Oncotype the same way, it seems yours is very favorable. Wishing the best for you!

    Yuuki

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  • stephilosphy00
    stephilosphy00 Member Posts: 386
    edited January 2017

    Hi Yuuki,

    I am sorry you have to deal with this again. I am not sure if I can still get oncotype or mammaprint after surgery since I am already doing chemo.

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