[Joan M]

Bravo, Jean. Well said. Also, I would agree that every HER2 survivor should have Herceptin.

I'd like to add that the point about the NCCN guidelines is that many doctors and insurance companies follow them. So, if you're being told that Herceptin is not for you, it might be based on just those guidelines. Two breast cancer medical oncologist from Sloan-Kettering are on the board of the NCCN breast cancer guidelines. On the other hand, some oncologists, even at major cancer facilities, bend the rules, and as Weety pointed out, ASCO has its own guidelines.

Another NCCN guideline problem is using Herceptin and Tykerb together even if a metastatic survivor progresses on Herceptin. Survivors on the board have expressed concern that their oncologists will not prescribe both drugs toegther, even though they do not mention the guidelines. Tykerb has been approved by the FDA for use only with Xeloda. But Dr. Eric Winer of Dana Farber/Harvard Medical School was touting online the superior results of these two drugs in combination, at a recap of metastatic breast cancer from the December San Antonio Breast Cancer Symposium. Yet doctors -- and insurance companies -- will still deny patients. Last week I wrote an e-mail to Dr. Carlson of Stanford University, who is on the NCCN breast cancer guidelines board pointing this out to him, since the NCCN's annual meeting is coming up soon. Dr. Winer is also on that board, as well as the two oncologists from Sloan-Kettering.

From my own personal experience at a major world renown cancer institute in NYC, I was advised in 2004 by a breast oncologist of no minor standing after I finished my treatments for stage 2b breast cancer at a local NYC hospital, that follow up should comprise only blood work and tumor markers, but no scans because of the stage of the cancer. I left the consultation thinking that with a 2.5 cm tumor that was HER2+, ER-/PR- and seven positive lymph nodes that hell would freeze over before I wasn't scanned. My local oncologist agreed to scan me routinely and three years later a 9mm tumor was found in my lung. After that I asked for an annual brain MRI, and the second one showed a 2.6 cm tumor. The brain surgeon at Sloan-Kettering was "teasing" me by saying that she'd heard I'd found my own brain tumor, because I did not yet have symptoms.

My sense about cancer is that if oncologists practically have "to kill" us with chemo to kill cancer, what does that tell us about cancer?

Joan