When the doctor doesn't call

Sarcoma offers pain, angst and a heavy dose of waiting by the phone. 

Let me explain: If you're diagnosed with epithelioid sarcoma, or any sarcoma really, you should see a sarcoma specialist. This often involves traveling to a big medical center.... Dana Farber, Mayo, Cleveland, Johns Hopkins, Sloan-Kettering, MD Anderson. (See here for a list of sarcoma centers.) The problem is that these places are busy, and their doctors are often arrogant jerks oversubscribed. So after you wait for your appointment, you may wait a long time for notes and recommendations -- even if your specialist promises them right away. And when you call/write/e-mail reminders after the promised timeframe elapses, you may hear nothing.

A recent discussion on the Sarcoma Alliance bulletin board aired a member's experience waiting months for information from her specialist at MD Anderson Cancer Center. I, too, recently spent weeks waiting for a promised surgical consult from a doctor at Sloan-Kettering. The logjam finally broke when I insisted that my doctor (whose e-mails had gone unreturned) page the surgeon. He called me within the hour. Anyway, some tips from the collective wisdom:

Be assertive at the visit. Ask how and when the doctor will follow up with you or your doctor.

Ask your doctor to call/e-mail the physician on your behalf if the promised follow-up doesn't happen.

If that doesn't yield results quickly, call the doctor's office yourself and leave a message. I'm not sure whether it's best to leave a message with the doctor's administrative assistant or her nurse.

If that doesn't work, urge your doctor to page the other doctor.

If that doesn't work, or your local oncologist is part of the problem, talk with the patient advocate or patient-advocate equivalent at the specialist's medical center. This can be a very powerful tool.

General thoughts: You have to be persistent and assertive. I (now) believe that you need to escalate the matter quickly once a mutually agreed-upon deadline passes. You also, of course, need to be understanding of the doctor's situation. But the experiences described on the board, as well as my own, convince me that it's easy to fall through the cracks and screw up your treatment by being passively "nice."

Bonus thought:It's often possible to negotiate medical timeframes. If you're told that you'll get word on a scan/biopsy/whatever in a week, it's reasonable to ask nicely if you could have the results sooner.