diagnosed and treatment course set at MDA, being treated locally--how to liaise?

lmede64 Member Posts: 32 Member
My sister, who was diagnosed with UPSC stage IVB in February 2011, went to MDA for her diagnosis and recommendation for the course of treatment. However, she lives in Florida and had to come back here for her treatment. Her local medical oncologist had a different opinion for the type of chemo to be delivered (we think it was because she was thinking in terms of earlier stage endometrial cancer) . My sister told her that the doctor at MDA was in charge of her case and she wanted to go with the chemo he suggested, and that is what was done. After her 3rd chemo treatment, she was expecting to have a CT scan, but her local doctor suggested waiting until after the 6th treatment. Again, my sister told her that the doctor at MDA was in charge and he rx'd a CT scan after the 3rd treatment. How does she take herself out as the middleman? I suggested that she call the liason person at MDA and ask them to set up a communication protocol with the local doctor. Does anyone have experience with this type of situation?
Many thanks,


  • Kaleena
    Kaleena Member Posts: 2,088 Member
    Your sister is doing


    Your sister is doing everything she should be doing. She needs to be her own advocate because doctors are busy so are the nurses and sometimes they just "go by the book". Not all cases are the same and your sister seems like she is on top of it. At first, I just did what the doctors said, but now after numerous incidents, I have taken the same approach as your sister. The doctors are really there to give opinions, but the choice is ours. It is ok too to get a second opinion, or even a third.

    I do have to say, though, that when you do not have a local doctor, sometimes the hospital/doctors are not very accommodating. My doctor is now 3 hours away, but the local hospital won't flush my port anymore even with a prescription from my doctor.

    Anyway, my best to you and your sister. I hope she finds a happy medium where she is now living.

  • upsofloating
    upsofloating Member Posts: 466 Member
    This can be a difficult
    This can be a difficult situation with one doctor calling the shots for another doctor to follow. The local medical oncologist most likely manages chemo for a variety of cancers whereas MDA's treatment protocols are most likely from a breadth of experience with this particular cancer, as well as being up-to-date on latest treatment protocols. A local gyn-onc would possibly be more in sync with MDA as likewise they treat a select group of cancers. Doctors are used to calling the shots and not so much into taking direction as though they were merely a technician - yes egos play into these issues. My late husband was a physician and a specialist who had to be careful not to step on the toes of local or primary care docs while seeing to it that the patients received optimal care. In this situation, if MDA had made contact with local doc at get go and managed to get buy-in on treatment plan, things might have gone smoother. Perhaps they still can?? Unfortunately, local doc may now be less receptive to input. It is unfortunate that this disease doesn't come with a "how-to" manual so we'd all be smarter from the start :(
    Wish I had more to offer as she tries to navigate these difficult waters. Perhaps bringing up the 'UPSC experience' card with med-onc might help smoothe things out.
    Best of luck,