If people relied on their doctors for the best courses of treatment there would be no need for this forum. We could just blindly accept whatever is put on our plate and the wide range of conequences as a result. I take the "patient advocate" thing seriously. We have many examples here of inaccurate and late diagnosis (I for one), inadequate, and sometimes fatal treatment plans. My mission has always been to promote patient self advocacy, period. To equip people with sufficient knowledge to, at the least, open up a dialog with their physicians and have some assurance that the best and most state of the art tools are being used in their fight. It has never been my intention to "sell people pipe dreams of reduced side effects in spite of the obvious..." (obvious what by the way?) Or to advocate a particular treatment modality.

My head & neck surgeon had me originally scheduled me for XRT. In literally the 11th hour, I convinced him to re-write the Tx order for IMRT (based on my industry insider knowledge and many sleepless hours of internet research), in spite of the fact that he went to medical school at UCSFCCC, he had NO knowledge of IMRT. I had to educate the doctor -and he is a very fine doctor. I didn't say this to promote IMRT, only to state the not so obvious that not all doctors are current in their knowledge of the latest advances in treatment. It just so happened that I was a perfect candidate for IMRT and NOT ALL ARE, but it doesn't hurt to ask the question now does it? In fact I have had regrets that I didn't have PBT instead, truth be known.

And your comment about "...assuming newer is always better". The NCCN oncology practice guidelines always recommend seeking a clinical trial whenever possible. This is not meant to slam 3DCRT. After all you are being treated at MSKCCC which is perhaps the best cancer center in the world. If I were in your shoes I would probably trust what the doctors are telling me. But for many here they don't or won't access MSKCCC or UCSFCCC or MD AndersonCCC, etc. and they need to know what is out there.

And about the smoking thing, I am not going to sugar coat this. I personally feel that people who use tobacco products, particularly after a brush with cancer are idiots (and yes I too was one of those idiots until I witnessed, up close and personal, people dying while working for Siemens linear accelerator division back in the 70's. I also have some serious bias since it also claimed my sister (at age 47) and my stepmother.

So flame away. I didn't sleep well last night and I'm a little grumpy today.


Gary Allsebrook
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Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)