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Jean · 07-11-2006, 12:50 PM

Penelope and Mary,
Much has changed since I first posted....
I consulted with Dr. Slamon out in L.A., He advised since my proliferation rate KI-67 was hight 40% - along with the oncotype DX test - high score of 31% high rate recurrance (he even felt I didn't even need the oncotype test since KI-67 level was so high) chemo/herceptin. For me it was never about the size of my tumor - rather my great concern was the character of the tumor. I had asked one onc. how many cells are in a 3 MM tumor? He said, "about one million" now when we consider that it only takes one to escape into the blood system - those odds for me were way too great. My nodes were negative, but I was not comfortable (yes that is favorable) but still did not feel confident. Er+ was postive 90% (strong) pr- negative. I did have great margins after lumpectomy - but once again knowing now the character of my tumor which was aggressive, her2+++ I made the decsion to move forward with chemo/herceptin. I believe that the early stagers (I was stage 1,again favorable) are a NEW generation of breast cancer patients. I do believe that the next few years will disclose treatment changes that will not depend on the size of the tumor but rather the chemistry of that tumor. These decsions are not easy when you are an early stager - but I felt like many of the dr. were not hitting the nail on the head so to speak. I had one dr., say to me "You are cured" well gee, where was I when the cure for breast cancer was found? I have said this before - being an early stager is almost like being a "Little bit pregnant" the onc. go by the size of the tumor and tell you "You are lucky" Well I don't agree - I was a very active 55 Yr. young woman enjoying life and never had any health issues. No history of breast cancer in my family (mother had 7 sisters). So it happens! Our health changes on a dime and we must get all the information we can on our "OWN" tumor and the character of that tumor in order to make the best health decsions. I was on Arimidex prior to chemo trt - after returning back from L.A. I knew I would be starting chemo/herceptin - so of course I had to discontinue the Arimidex.
I am sure that upon completion of the chemo I will be back on Arimidex along with a yr. of herceptin. I am now half way through chemo and will be completed on 9/14 (God willing) all is going well. I just wish that women
did not have to struggle so in order to understand their own tumor makeup.
I cannot understand why these tests are not done as matter of course
so one hears the full load from day one. I had to demand a FISH test,
oncotype test - but first I had to find out about them. Would it not be nice
and effective if the oncs. have complete disclosure in their offices about testing that "WE" the patient may wish to have done. The system is strange - I say thank the Good Lord for this wonderful site. I am convinced it saved my life. Hope this helps.

Warmly,
Jean

07-11-2006, 12:50 PM	#20
Jean Senior Member Join Date: Oct 2005 Location: New Jersey Posts: 3,154	many changes Penelope and Mary, Much has changed since I first posted.... I consulted with Dr. Slamon out in L.A., He advised since my proliferation rate KI-67 was hight 40% - along with the oncotype DX test - high score of 31% high rate recurrance (he even felt I didn't even need the oncotype test since KI-67 level was so high) chemo/herceptin. For me it was never about the size of my tumor - rather my great concern was the character of the tumor. I had asked one onc. how many cells are in a 3 MM tumor? He said, "about one million" now when we consider that it only takes one to escape into the blood system - those odds for me were way too great. My nodes were negative, but I was not comfortable (yes that is favorable) but still did not feel confident. Er+ was postive 90% (strong) pr- negative. I did have great margins after lumpectomy - but once again knowing now the character of my tumor which was aggressive, her2+++ I made the decsion to move forward with chemo/herceptin. I believe that the early stagers (I was stage 1,again favorable) are a NEW generation of breast cancer patients. I do believe that the next few years will disclose treatment changes that will not depend on the size of the tumor but rather the chemistry of that tumor. These decsions are not easy when you are an early stager - but I felt like many of the dr. were not hitting the nail on the head so to speak. I had one dr., say to me "You are cured" well gee, where was I when the cure for breast cancer was found? I have said this before - being an early stager is almost like being a "Little bit pregnant" the onc. go by the size of the tumor and tell you "You are lucky" Well I don't agree - I was a very active 55 Yr. young woman enjoying life and never had any health issues. No history of breast cancer in my family (mother had 7 sisters). So it happens! Our health changes on a dime and we must get all the information we can on our "OWN" tumor and the character of that tumor in order to make the best health decsions. I was on Arimidex prior to chemo trt - after returning back from L.A. I knew I would be starting chemo/herceptin - so of course I had to discontinue the Arimidex. I am sure that upon completion of the chemo I will be back on Arimidex along with a yr. of herceptin. I am now half way through chemo and will be completed on 9/14 (God willing) all is going well. I just wish that women did not have to struggle so in order to understand their own tumor makeup. I cannot understand why these tests are not done as matter of course so one hears the full load from day one. I had to demand a FISH test, oncotype test - but first I had to find out about them. Would it not be nice and effective if the oncs. have complete disclosure in their offices about testing that "WE" the patient may wish to have done. The system is strange - I say thank the Good Lord for this wonderful site. I am convinced it saved my life. Hope this helps. Warmly, Jean Last edited by Jean; 08-06-2006 at 09:10 PM..