Topic: Long term "high oncotype test" survivors

Hi Liz:

   My score came back the same as yours on the OncoDX 30.   I had 1.1 cm of IDC, Stage 1, Grade 3 with associated DCIS.   When my oncologist called me he was concerned about the 30 score and said he personally would do chemo because with Tamoxifen alone my chances of recurrence was 20% and this would lower it to 12%.   I got a second opinion who felt chemo was a necessity for that score.  31 and up is considered high risk and the average high risk person scores exactly 31 according to the OncoDX site if I read it correctly.   I would get a second opinion.  The test will also tell you if there is a mutation or overexpression of the P53 gene.  From what I've read, Adriamyacin may not work in that case scenerio and a taxane drug (Taxotere and Taxol) with Cytoxin may provide more benefit.  I would think twice about skipping chemo.  Good luck!

My mast was Oct 31,   2006 followed by dose dense AC then 1 Taxol (to which I had a huge reaction) and switched to Taxotere for 7 more infusions. I had to stop a little early because of staph, strep, thrush and numerous side effects that were making me very ill. 

 My onc put me on Arimidex which I took for 7 months. I hate the stuff. It turned my 61 year old body into a 90+ year old body. My joints were extrermely painful. Walking and rising from a chair were really difficiult. After 7 weeks off of Arimidex, I was put on Tamoxifen. I have stopped taking it due to extreme cramping in my upper thighs. 

 Are there any "high" risk Oncogene scoring patients who are not taking adjunctive hormone therapy? I have started to think that quality of life is more important than quantity. 

My onco score was 32. My oncologist called me late on a Friday afternoon to say the test score was high and indicated chemo would be appropriate. She "neglected" to say what "high" meant. I went to the Oncogene site and found the scores and their meaning. High begins at 30 and continues to 100. Finding out that I was near to the beginning helped only a little with the worry of recurrence.

Does the Chinese herb cause side effects similar to Arimidex? Arimidex gave me terrible joint pain.

I'm in California so traveling to NY doesn't appeal to me but what is life worth? Perhaps there is a Chinese Herbalist here that is also knowledgeable. I'm 15 minutes from San Francisco. Any ideas.

 Thanks for your words of wisdom.

Barbara