ACOR.ORG

Last weekend, I registered with acor.org (Association of Cancer Online Resources), which is basically a virtual cancer community with a variety of resources and support groups, including mailing lists and "message boards" for specific cancer types. Of course, I joined the Carcinoid Cancer Online Support Group, which is an unmoderated forum for patients, caregivers, researchers and doctors to discuss "clinical and nonclinical" aspects of NET cancers.

On Sunday night, I posted my own burning question on the carcinoid message board: am I on the right course with Sloan-Kettering's "wait and see" approach given my pathology, ongoing health issues, and recent scan results? Within a few hours of my post, I had 12 experience-based, insightful responses. Since then, I have continued to get emails and responses - which overwhelmingly echo the same thing: given the nature of carcinoid cancer in general, and my pathology and symptoms in particular - I really need to see a carcinoid specialist for a second opinion on a more aggressive treatment plan.

Now, there is nothing in the world I would ever say against Sloan-Kettering... they saved my life, and Dr. Nash is one of my all time heroes; period. Dr. Nash's schooling includes both Harvard and Columbia, and he's authored many papers on advances in minimally invasive surgeries for colorectal cancers. He is the best at what he does... but his practice does not focus on long-term carcinoid cancer care.

Gary and I discussed our options, and decided to contact Dr. Richard Warner's office at Mt. Sinai (one of the best carcinoid experts in the world) for an appointment. Unfortunately, he only accepts Medicare (no private insurance), and a consult with him runs between $750 to $1000 - way out of our price range. We then turned to the CCF website, which lists doctors who are carcinoid / NET specialists, which they define as having:

* 10-20 years or more experience in treating carcinoid / NET patients
* authored or coauthored more than 10 peer review articles on carcinoid / NETs
* treated 100+ carcinoid / NET patients over time

While there was one Sloan-Kettering doctor listed (Dr. Kelsen) we decided for a second opinion we really needed to look outside of the Sloan-Kettering philosophy - and found two possibilities: Dr. Matthew Kulke at Dana-Farber Cancer Institute in Boston and Michelle Kim at Mt. Sinai in NYC. The benefit of Dr. Kulke is that Dana-Farber has a carcinoid / NET research program that evaluates over 200 NET patients a year. The benefit of Dr. Kim is that she works directly with Dr. Warner. I think I'll post these names on the acor.org message board, and see if anyone has any experience with them.

I strongly recommend joining acor.org; it is a lifeboat for us zebras - who are otherwise left treading water in a sea of "huh...I never heard of that cancer before" frustrations.

UPDATE: I already got a few responses from my acor.org posting re: doctor referrals ... including one incredibly important one: the CCF lists both carcinoid experts and those willing to treat noid patients... the experts, however, are in a light blue box. Thus - Dr. Kelsen and Dr. Kim are not "experts" in carcinoid; Dr. Kulke is.

Second UPDATE: I put in an appointment request for Dr. Kulke at Dana Farber Cancer Institute, who is covered by my insurance and comes highly recommended by several other noid patients. Thanks again for everyone's input.