Please let me know what you think i should do next

[Nancy L]

Lani

Tried to send you a private e-mail to answer your questions but I couldn't find an address. So everyone else, please excuse me using this thread to reach Lani.

I have always felt there was some connection between my sister's BC and mine. When I was diagnosed, Dr. Rugo told me it probably was some gene they have discovered yet coming down from my father's side. He died of prostate cancer. I wonder if my sister was always HER2 positive and if perhaps I was ER/PR positive and my tumor changed to negative before diagnosis. The erie thing for me about my sister, father and me is that we were all diagnosed very late stage even though we had all the typical screening tests on a regular basis, visited our physicians because we had other symptoms and none of us were detected by those screens or exams. For example, my sister had a mammo six months prior to diagnosis and mine was 10 months prior to diagnosis. My sister and I had almost identical size tumors and the same number of positive nodes---very odd.

I would consider paying to have my sister and my father's tumors tested using current science but I wouldn't know how to go about making it happen. I do believe there are answers to be found in families like mine, but as you said, there is no money in it for the drug companies. Maybe a Phd candidate will be curious enough to study this kind of situation in the future.

Oh, I asked Dr. Slamon if Her2 is inherited and he told me NO.

My sister's BC info is as follows:
Willie----Age 47 at diagnosis/died at age 54 (2002)
Pre menopausal

Stage III ductal carcinoma in situ of the left breast.(7x5x4 cm tumor with 11 of 18 lymph nodes positive)

Estrogen/Progesterone Receptor positive

Her2neu negative at diagnosis by a test they don't use anymore---unreliable I am told. When diagnosed metastatic, they tested the tumor removed from her liver and it came back Her2Neu positive using the FISH test. But as I said, they believed the second test was wrong rather than the first one.

My history

Age at diagnosis--57 (8/2004)

Post menopausal

Stage IIIC focal high-grade ductal carcinoma in situ of the left breast with invasive component (7x5x3cm tumor with 11 of 11 tested lymph nodes positive for metastatic carcinoma with extranodal spread).

Estrogen/Progestrerone Receptor negative
Her2neu positive by FISH (HER217Z1 ratio of 4.03)
CT post surgery identified a single prominent left axillary/subpectoral lymph node measuring 11 mm.
Ki-67 staining was 70%
TNM Staging: pT3pN3pMX