[shelli]

I want to make others aware of my story & need for accurate DX & 2nd. opinions on path. I was dx over 2 yrs ago with Her2+ BC. IDC & DCIS GR3,
T1CNO. ER6/PR-, ki67-94, MBR-9/9, DCIS-comedo. Very aggressive BC. Had
lump, ACT/DD, T/DD, 36rads/boost, 52 wks Herceptin. Dev. cardiomyopathy
EF started at 65 prior to Herc. & to 41 during it. Never stopped it. Herc. ended in Feb. EF now only at 49. Docs. say o.k.? Was on Arimadex switched to Femara d/t (bad joint stiffness hands/feet, etc.) Since only borderline ER+ had orig. path retested to see if I could stop AI if ER was -. Path now tested on Surg. exc. tumor was ER-/HER+. Then told that core biopsy specimen more accurate! It came back ER 1-5 on C/biopsy & HER2 FISH 1.1 neg. In the same week I also read that both Adriamycin & Taxol were probably ineffective for me d/t ER+ as well as the Herceptin since I was orig. dx as HER+. The lab it was now tested at is tops in BC & Dr. Allen Gown who did tests is world renown pathologist. They use more accurate tests on FISH with a rabbit antibody instead of mouse & count more cells on slide to determine results. (Lab: Phenopath - Seattle, Washington)

At this point, being completely crazy from info. overload & fear, I asked Dr. Gown if there were any other tests that would be beneficial for me to be performed. Thus, he did: p53, p63, EGFR, c-kit gene 145kd, & cytokeratins
5 & 6. Results were + on each one for a new BC variant called "basal-like".
This newly defined group comprises approx. 15% of BCs. It usually consists
of triple - (ER-/PR-/Her2-), younger women, & most often African Americans, & BRCA 1+. However, I was 51 at dx, caucasian, BRCA-, & ER low+(1-5). So I fit into about less than 3% of this group & all BCs. It is worse than HER+BC d/t huge risk of relapse, poor survival outcome, & no
targets known at this time for treatment. Also, so new, most docs don't even
know what it is or what to do about it. Can't qualify for clin. trials d/t all the
tx. I have already had. Currently NED but watching some spots lung/liver.

I was told by path. that many labs are now doing 2 FISH tests for more
accurate results if unsure or HER at 2+ (equivocal). Please be sure to
have any path. retested at top labs who specialize in BC if in doubt or for
2nd. opinions. I feel that I went thru all of this for the last few yrs. & am now at square 1 all over. However, this time there is no wonderful support
group like this site for me and I'm having to do research to figure out who
the top MD's are with exp. in this type of BC. Unfortunately, I live in Vegas
& the care is horrible here with no major teaching/research facilities. I have
gone back on Femara for lack of anything else other than faith/luck/prayers.
I hope my story may be helpful to others & if anyone knows about what I have or has suggestions/recommendations/etc., I would love to hear from you. This site helped me greatly, was a lifeline to me, all this time thinking I was HER2+. Everyone is incredibly knowledgeable, helpful, willing to share, and concerned about each other. Kudos & thanks to Joe and his wife for providing this site for all of us! I have some research articles I can e-mail
on Core BX vs Surg. Excised Tumors & on testing for Basal-like BC. You can
"Google" Basal-like BC too. Let me know if I can help anyone with the info.
I am learning & acquiring. I am a retired RN