HER2 Support Group Forums - View Single Post - If you fit this profile EXACTLY please respond.

Jean · 03-28-2006, 09:16 AM

Suzan,
I am impressed with your onc. I live in the New Jersey - outside New York
City only 18 miles - I went to Sloan, Cornell, Mt. Sini and St. Barnabis hospitals
and on the East coast the "gold seal" of treatment is different. You have to have a tumor over 1 cm - to even been considered for chemo - maybe if the grade of the tumor is high (yours was a 3 right?) they would approach it differently. My was a grade 1 (but that does not make me feel) any better or safer. I requested to have the oncotype DX test done and the tumor tissue
I had left was 3MM and of that block I would have used the entire sample to have the test done. My surgeon was agaist the test on two counts.
1) Even if the test came back high he would not agree that chemo or herceptin should be used as a treatment.
2) The test would leave nothing of my tissue block and he was concerned that in the future what we would have of the tumor in the event we needed it.

All the onc. I saw also stated that they would not change my treatment if the Oncotype came back high. It has been very scary and frustrating - since in my opinion it is a best guess scenario. I even sent my information to
John Hopkins to Lille Shockney who is the Director of the Breast Center.
She also stated that they would not have given me herceptin.

My cancer was DCIS invasive. To me all bc are dangerous! I see my onc
on 4/19 and will review my case once again. Do you know of anyone being treated with herceptin who has not had chemo? I am approaching 9 months
out from radiation treatment and I doubt anyone would now consider chemo
treatment.

I too have joint pain from the Arimidex. I also take glucosamine/chondroitin.
I exercise on a regualr basis (yes it helps greatly) I think we get used to the
discomfort. Your contact has helped ever so much.
Suzan thank you for your time and details of your profile. I plan on discussing
with my onc. the different points and I will let you know what comes of it.
I am not sure if the pr status along with the grade of the tumor will
be the cutting point with my dr. My mind and gut keep saying if it
is cancer along with Her2+++ then go for the herceptin.
The cancer was tuff enough I was unprepared for the battle of treatment
and it seems to me that the dr. on the west coast are more willing
to work with newer treatments and not so worried about the "gold seal"
approach. Let's stay in touch!

Wishing you all the best!
Jean

03-28-2006, 09:16 AM	#14
Jean Senior Member Join Date: Oct 2005 Location: New Jersey Posts: 3,154	Impressed Suzan, I am impressed with your onc. I live in the New Jersey - outside New York City only 18 miles - I went to Sloan, Cornell, Mt. Sini and St. Barnabis hospitals and on the East coast the "gold seal" of treatment is different. You have to have a tumor over 1 cm - to even been considered for chemo - maybe if the grade of the tumor is high (yours was a 3 right?) they would approach it differently. My was a grade 1 (but that does not make me feel) any better or safer. I requested to have the oncotype DX test done and the tumor tissue I had left was 3MM and of that block I would have used the entire sample to have the test done. My surgeon was agaist the test on two counts. 1) Even if the test came back high he would not agree that chemo or herceptin should be used as a treatment. 2) The test would leave nothing of my tissue block and he was concerned that in the future what we would have of the tumor in the event we needed it. All the onc. I saw also stated that they would not change my treatment if the Oncotype came back high. It has been very scary and frustrating - since in my opinion it is a best guess scenario. I even sent my information to John Hopkins to Lille Shockney who is the Director of the Breast Center. She also stated that they would not have given me herceptin. My cancer was DCIS invasive. To me all bc are dangerous! I see my onc on 4/19 and will review my case once again. Do you know of anyone being treated with herceptin who has not had chemo? I am approaching 9 months out from radiation treatment and I doubt anyone would now consider chemo treatment. I too have joint pain from the Arimidex. I also take glucosamine/chondroitin. I exercise on a regualr basis (yes it helps greatly) I think we get used to the discomfort. Your contact has helped ever so much. Suzan thank you for your time and details of your profile. I plan on discussing with my onc. the different points and I will let you know what comes of it. I am not sure if the pr status along with the grade of the tumor will be the cutting point with my dr. My mind and gut keep saying if it is cancer along with Her2+++ then go for the herceptin. The cancer was tuff enough I was unprepared for the battle of treatment and it seems to me that the dr. on the west coast are more willing to work with newer treatments and not so worried about the "gold seal" approach. Let's stay in touch! Wishing you all the best! Jean