Low er (trip neg) brca1 carriers

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Dee1987
Dee1987 Member Posts: 22

hi there I was diagnosed back in November last year at 31yrs idc 15mm,er 15% but being treated as trip neg, ki 67 90% brca1 positive currently finished ac and about to do carbo-taxol. I know this is a long shot as most of you did chemo first and I haven’t a clue why I was operated first before chemo. Did it mention tumour necrosis in anyone’s pathology report? It’s seems to me that I’m the only on

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited March 2019

    Mine mentioned necrosis, also TNBC.

  • Dee1987
    Dee1987 Member Posts: 22
    edited March 2019

    thank you for fast reply what did your oncologist say about it? I’m trying to refrain from looking online as anything to do with this type of illness is deathly.i only noticed it on the pathology the other day and was surprised that none of the oncologists I’ve seen have mentioned i

  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited March 2019

    I believe it basically indicates a high grade tumor. the cells in the interior of the tumor die due to lack of nutrients/oxygen.

  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited March 2019

    PS If you had a high grade tumor, and it was not in lymph nodes, they would want to take it out. I had lymph involvement in 1-3 nodes at diagnosis, so it was 'out of the building' already and so we went to chemo first.

  • Dee1987
    Dee1987 Member Posts: 22
    edited March 2019

    have you had the brca testing yet? Mine came back positive a few weeks ago so no I have carboplatin added to the mix

  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited March 2019

    I was BRCA tested but it was negative. But my MO thought Carbo/Taxotere would be the best for me anyhow. It was very effective. I had chemo first as thre was definitely cancer in one lymph node already, upon diagnosis.

  • Dee1987
    Dee1987 Member Posts: 22
    edited March 2019

    that’s what I have coming up next how were the side effects?

  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited March 2019

    Not nearly as bad as I was worried it would be... I did a "fasting mimicking diet" prior to each chemo (I have posted lots of info, if you search this site for those terms) and it helped my SEs a lot. You can look up specifics of what I did on the TN forum under Member's success stories thread. I did a huge amount of complimentary things which I believe may have helped me and certainly did not hurt me.

    My main SEs were constipation right after chemo, mental fogginess, food aversions (I was "hangry," but nothing seemed appealing), and fatigue. That began about day 3 or 4 and would lift by about day 6-7... it took a bit longer for me to bounce back as I had more and more chemos, but I did bounce back to feeling quite normal until the end, when my anemia was pretty bad.

    The chemo-specific SEs were roughly the same all 6 times. Never had bad nausea, just queasiness. Food tasted weird and wasn't appetizing, though I was hungry. I took a lot of supplements and I iced.... I think these practices protected me from the neuropathy, fingernail issues, and mouth sores, thought I might have just been lucky. I did interval training throughout on the recommendation of an integrative MO I consulted.

    You can do this!!-- and you can get rid of TNBC! That's the silver lining. After 3-5 years clear there is practically zero recurrence. So be aggressive!

  • Dee1987
    Dee1987 Member Posts: 22
    edited March 2019

    thanks for the advice it was so annoying not having anyone with similar pathology but then I guess majority have chemo first so would know. When researching brca1 carriers it mentioned one of features was necrosis

  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited March 2019

    well even though my chemo was first the necrosis was obvious in the biopsy.

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