MD Anderson – Cooper

Hi TKriner,

When considering treatment at a satellite or affiliated hospital of a major cancer center, it is important to be sure that facility also has experts in our rare cancer.

To give an example from my own case, I was initially diagnosed and treated at Johns Hopkins in Baltimore, but when it came time for chemo and radiation, I asked if that could be done at a satellite facility closer to home.  The doctor in Baltimore told me that although he was be happy to give his opinion on anything to my new treating doctors, I had to understand that they would fully take over responsibility for my case.  The local doctors he recommended have been very good but do not have particular expertise in cholangiocarcinoma.  Once or twice, it was necessary that they consult with Baltimore, which they did by email.  Subsequently at one point I felt my case should be reviewed by an specialist, and I made an appointment with a doctor in Baltimore.

If you are considering a satellite or affiliated hospital of a major cancer center, it is essential with a rare cancer to verify that there is expertise where you are being seen particularly for the diagnosis, establishment of a treatment plan and monitoring.  It may be that this can only be done at the mothership if that is where the expertise resides.  Once the treatment course of action is settled, it may be possible to shift some parts of the treatment to a close-by provider, but be sure you understand what the roles and responsibilities will be going forward.

Good luck as you search out a good hospital and doctors.

Regards, Mary