BRCA Analysis and ILC

DFC1994
DFC1994 Member Posts: 163
edited June 2014 in ILC (Invasive Lobular Carcinoma)

I just got results from my brac analysis and I am both Brca1 and 2 Negative!YIPEE! BUT it leaves me to wonder why I had ILC,2 tumors in my left breast and DCIS in my right.Even my primary DR comments,Girl,you must have some bad genes.I assume since my tumors were ER and PR + that is must be from hormones.Anyone else with a similar diagnosis that was brac negative?. I am happy for my families that I am negative but confused as to why I got this rare ILC so young.

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  • nowords
    nowords Member Posts: 423
    edited March 2010

    I tested negative for both BRAC genes. I was diagnosed at age 50 with ILC over 10cm tumor. Doc said it had been there at least 5 years. (I had mammos  annually since the age of 40...)No history of cancer in the family. I think estrogen plays a part...I was still breaking out with acne until the chemo stopped my periods.

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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited March 2010

    Dee,

    My onc did not recommend the brca test as he said it's not 100% accurate yet. There is a history of cancer in my father's family.

    Your profile says you are HER2 positive. Did you have chemo? or is that a mistake. I had pleomorphic lobular, no nodes. But it was HER2 so hence the chemo. I was also highly hormone receptive for both ER and PR. Anyway, having triple positive lobular is extremely rare.

    Sue

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  • DFC1994
    DFC1994 Member Posts: 163
    edited March 2010

    The Her2+ is a mistake. I tried to edit it to fix it but it didn't. I will try it again.

    Sorry.

    I didn't have chemo due to the size of my tumors. they were small and in stage 1 and no lymph nodes.I could not take tamoxifen because I developed a deep vein clot after my double mx and was tested for genetic clotting disorders and tested positive for 2 disorders.Since a SE of tamoxifen is blood clots they would not risk me taking it so they removed my remaining ovary to stop as much hormone production as possible.

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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited March 2010

    Dee,

    I thought it might be a mistake. HER2 +ve lobulars are usually found in older women like myself - I'm 57. There are only a few of us on these boards. I was stage 1 too and didn't expect to have chemo - bummer. We are both lucky they were found early. Mine was only 12mm. Lobular is often not found until much larger.

    Sue

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  • nowords
    nowords Member Posts: 423
    edited March 2010

    I did have dose dense AC neo adj chemo x4. Docs said that there was only a 1 to 3% chance that it would do anything, but since the tumor was so large and appeared mm from the chest wall on MRI they thought it might shrink it or at least have a possibility of systemic benefit. The pre surgery MRI showed what was felt to be a good response to the chemo, but the risk of side effects vs. benefits of adding Taxol neo adj were deemed too high so I had surgery. Pathology showed no response to chemo. Prior to surgery, the shape of my cancerous breast and inverted nipple reverted to a normal appearance, but the cancer was all still there. Clean full body PET after surgery for what it is worth with ILC...then 25rads.

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  • LindaLou53
    LindaLou53 Member Posts: 929
    edited April 2010

    DFC1994,

    I had IDC in my right breast and 5 years later we found ILC in my left breast.  Both my cancers were ER +.  I also did the BRCA testing and was negative for both BRCA 1 & 2.  HOWEVER, based on the family history I provided which showed an excessive amount of prostate, pancreatic, ovarian and renal cancers on my father's side, the genetics counselor said she has no doubt there is a genetic defect for cancer in my family.  The problem is that being BRCA negative does not exclude the possibility that your family still has a genetic tendency towards cancer.  They have yet to identify thousands of gene defects and develop tests to detect them.  In my family's case the counselor said she would still advise early screenings for both women and men in my family until they are able to determine just what gene anomaly we do carry.

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