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When I was first diagnosed my surgeon and onc thought that I had a 3 cm tumor and no positive nodes. My onc did not intend to do more than radiation. I was not comfortable about this as I thought the tumor was too large for there to be absolutely no spread. (I have an old microbiology degree....lol) Being her2+ never crossed our minds. After my onc found the tumor in my supraclavicular node after my supposedly clear margins he immediately put me on chemo (AC + Taxol). At that time testing for her2 was not standard but herceptin was getting a lot of press. I hesitated for quite a while but finally phoned my onc's office and left a message requesting that I be tested for her2. It was the first time I took any independent action and thank goodness I did. We were all surprised at the results and I began herceptin during my last treatment of taxol. I also bought the book on the development of herceptin and did a lot of reading. I really wasn't sure what to think but once I found this site and spent some time on it I found myself feeling more empowered, knowledgeable and calm. Because of my experience with a second tumor following clean margins I am a firm believer in all her2+ bc patients getting chemo but I am also very optomistic that we are indeed the lucky ones.
Cathy
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Cathy
Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18
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