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Sep 19, 2009 11:53AM
, edited Sep 19, 2009 12:37PM
Hi mmm5 - I'm glad you started this thread - you always ask interesting questions!
I DID get the Oncotype DX test done - but it was done in error. My onc ordered it before he received the results of my FISH report. My Her2 status originally was "equivacal" and in tiny print at the bottom of the path report, it said the tumor was sent out for a FISH test. My breast surgeon and his office dropped the ball on this one - while I was so sick in the hospital with the MRSA - and while my brast surgeon was moving from his old dusty office into a brand-new shiny more expensive place - no one bothered to follow-up on receiving this report - not even me, because I had no clue what was going on. Once I was released from the hospital (3 weeks after my original surgery date) and finally saw my onc in his office, he said the results of my Oncotype DX were "low" and I wouldn't need chemo - I could just go home with a prescription for Arimidex..........but "oh wait a minute, what's this? Your FISH report was never received. Wait here just 5 minutes while I have them fax it over, then you can leave."...............well, 5 minutes later he opens the door with this really serious expression on his face and says, "Come back inside and let's talk about your FISH report." My heart dropped.........almost as much as when I was first dx'd with bc. My onc proceeds to tell me that my FISH report shows the tumor was Her2+++ and I would definitely need chemo with Herceptin and probably a port. Later (after researching info here at bc.org and getting MUCH smarter) I asked him what my actual Onctotype DX score was - and he said 22. Well - duh - 22 is NOT a "low" score - but "intermediate" with a 14% chance of recurrence! I was flabbergasted! I was led to believe by my breast surgeon that by getting a mastectomy instead of a lump with rads, I had decreased my chance for recurrence to near 0% - so much for believing numbers from a surgeon..........stupid me, I should have seen a medical onc before making any surgery decisions. My onc was so shocked at my Her2 status, he sent the tumor out to a second lab for a second FISH test - and it came back even higher - Her2++++. He said it's very unusual to see Stage 1 Grade 1 tumors showing up so highly Her2+..........I just mentally keep thanking the radiologist who first saw the nodule in my mammogram!
Sorry for being chatty-Kathy (my nickname since kindergarten!) Even though your score was very high mmm5 - it was good your onc got the Oncotype DX test done, sounds like he was being very thorough, especially considering your Grade 3. There are a lot of genes they examine to determine your recurrence rate.........and I for one like to KNOW all about the good, the bad and the ugly with this horrible Beast!
Edited to add: A new study reported here at bc.org shows that many women are not getting the proper testing done prior to being treated with Herceptin - I would have fallen into that category if my onc hadn't noticed my missing FISH report!
3/3/08 Right-side mastectomy with immediate muscle-sparing free tram; 3/9/08 Developed abdominal MRSA staph infection and hernia;Completed 4 months Navelbine and 1 year Herceptin; Arimidex - 3 more years! Diagnosed at age 53
2/5/2008, IDC, <1cm, Stage Ib, Grade 1, 0/7 nodes, ER+/PR+, HER2+