The Story Behind Kennedy’s Surgery

[groovedaddy]

When Senator Edward M. Kennedy disclosed on May 20 that he had brain cancer, three days after suffering a seizure, doctors did not list surgery as a possibility. A news release from Massachusetts General Hospital in Boston left the impression that radiation and chemotherapy were the main options for his pernicious type of cancer.

Two weeks later, Mr. Kennedy, 76, flew to Durham, N.C. There, at Duke University on June 2, neurosurgeons operated for three and a half hours and declared the procedure “successful,” though they did not specify their criteria.

Precisely why Mr. Kennedy’s treatment course changed is not known; he and his doctors are not talking to reporters.

What is known is that a few days after Mr. Kennedy learned he had a malignant brain tumor in the left parietal lobe, he invited a group of national experts to discuss his case.

http://www.nytimes.com/2008/07/29/health/29docs.html?th&emc=th

[zbdent]

1. money does talk ...

[Celebration]

2. complex cases

If someone has really good health insurance and a decent doctor with any connections at all, the same thing can happen. It doesn't have to be someone rich or with celebrity status.

I know of two cases of cancer that were determined to be "inoperable" by local surgeons, but who were able to get different treatment elsewhere. In one case, someone had an operation by the only person in the country deemed able to do that particular operation.

It starts with your doctor calling friends and colleagues, and sometimes the end result works out.

Neither of these people had any kind of special status or connections-just good health insurance and a doctor that is reasonably well connected.

But consider this-there is absolutely NO WAY that everyone in the country can get this kind of care. If there is only one person in the country able to perform a particular type operation, the demand will probably outstrip the supply. I don't see an answer to that dilemma, other than attempting to train others. But there are some surgeons that just have exceptional skills. And yes, they deserve to be rich. And it is not mathematically possible that all people can get treated by a surgeon who is in the top 1% of his field. But hopefully, these surgeons will at least be saved for the complex types of situations.

[supernova]

3. The lesson here

isn't really that Kennedy is well connected and can pay for it, which is true, but it's more than that. There are textbook lessons for everybody.

* If you or your family member has a rare disease, it really does behoove you to DO YOUR HOMEWORK about your diagnosis. What is it? What institutions are considered expert for this disease/condition?

Kennedy did exactly what you should do, which is shop your info around to everyone who is an expert. Since he is rolling in it, he could afford to get together a conference call to save time. But everybody can ask their present MD to send their records for referral to where ever you want. As many of them as you want. Any MD is more than happy to do so. Time is of the essence and Fed Ex is perfect for this.

* Think outside the box. Consider experimental. Don't be satisfied with pronouncements about routine therapies if they do not provide enough relief. Don't be a good victim of your disease. Be an outrageous advocate for yourself.

* If money is an issue, and for most of us it is, ask about arrangements or charity care. It is not unheard of. But if you don't ask, you definitely won't get it. For instance, many drug companies have low cost purchase programs that they don't advertise. But the MD's office will know about. So ask.

* Docs love to get weird or unusual cases. Hey, even their jobs can become routine for them. If your case is unusual or very hard, so much the better. That's how you get discussed in the 6AM Grand Rounds. Again, this was Kennedy, since his tumor was considered inoperable to many who saw it. And Duke never misses an opportunity to poke Mass General and Johns Hopkins in the eye. ;-) Kennedy made that work to his benefit.

My point is, don't just assume Kennedy got what he needed just because he's KENNEDY. He and his wife did some very smart things that everyone can do. :thumbsup:


Supernova - Professional cardiac patient since birth, witness to my mother's death from breast cancer, six years working in Duke Cancer Center.