I have known Sharon Anderson for many years and watched her eAdvocacy evolve.  A nine year leiomyosarcoma (LMS — a very rare cancer) survivor, Sharon has tirelessly used her social work skills to help LMS patients directly while actively promoting an increase in research to find a cure. In 2005, she successfully co-lead a very innovative patient-driven tissue donation campaign: the L-M-SARCOMA patient community collected over 300 of their own tissue samples and donated them to Dr. Matt van de Rijn at Stanford University. Using state-of-art bio technology, Dr. van de Rijn conducted an extensive DNA & tissue microarray analysis. This study is by far the most extensive and promising research ever done on LMS. Sharon is now executive director of the LMS Direct Research Foundation (LMSdr), designed to bridge the gap between Leiomyosarcoma researchers & patients.

So, what Sharon published yesterday in the L-M-SARCOMA ACOR group should not come as surprise. It is among the finest examples of what truly activated patients, dealing with complex and rare diseases, are doing today. Remember that just in tiny ACOR, these expert patients number in the thousands! While many doctors are still wondering why the patient should have any role in their care, these expert patients have jumped so far ahead that I often wonder if it is even possible to find appropriate points of contacts between the forthcoming flow of expert patients and the old guard of the medical world, that unfortunately still represents the majority of practicing doctors.

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How To Dump A Doctor

Some of us in this group, especially after joining the group, have realized we are not getting the best care possible.

It happened to me.  After diagnosis in 2002, I was sent to a highly respected gyn onc at UCSF.  Her follow care plan was a pelvic exam every 90 days and a yearly chest x-ray. As soon as I joined this group, I got a flood of messages telling me to get ct scans every 90 days.

You need to dump your current doctor  if they…

1. are not willing to support getting second opinions from sarcoma specialists
2. do not consult a sarcoma team about your case (surgeons, radiologists, etc.)
3. are not willing to consider or negotiate with you on your choice of treatment options
4. do not want you to ask questions, or simply question their treatment plans
5. do not encourage you to learn as much as you can & advocate for yourself

YOUR RESPONSIBILITIES:  You are part of the treatment team… DO YOUR HOMEWORK…. Be realistic about the doctor’s time and use it wisely…

1. Read your own records and learn the cancer basics and treatment methods on your own.
2. Don’t use your doctor’s time for a therapy session….be brief about your issues and get a therapy referral instead.
3. Bring printed articles or clinical trial protocols. HIGHLIGHT what you want them to read or discuss with you.  Doctors can’t search for every possible trial, read every newly published sarcoma article or answer to every question you have.

HOW TO SWITCH:

1. Call your insurance for a list of sarcoma specialists which they will pay for.
2. Call that physician’s office directly – Ask for a second opinion appointment.
3. When there, ask if they’d be willing to be your treating doctor permanently.
4. Inform your insurance of the change

Notice that you do not have to get your current doctor’s permission!
It is YOUR MEDICAL RIGHT as a patient to see whatever doctor you want.

Hope this helps,
Sharon in San Francisco