← Return to High grade glioma: waiting for remainder of molecular testing

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Profile picture for raphaela2025 @raphaela2025

I just had my first online radiation oncology appt. It was with the resident and attending. It's a teaching hospital, so I spent 30 minutes with the 1st year resident who was just so irritating. Then she left me hanging for 45 minutes (I'm venting) with her camera off talking with the attending.

Neither of them not other oncologists I've talked to have been forthright with me. I just called Mayo about finding out if I could do Optune or Targeted Therapy or something else--I don't think they have a clinical trial right now--without first doing standard of care. It sounds like that won't be possible with Medicare.

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Replies to "I just had my first online radiation oncology appt. It was with the resident and attending...."

Are you able to consider another hospital that has a neuro oncology team while all of the major research hospitals are teaching hospitals, at the very least you should have a 'fellow' who has been through residency, not a 1st year resident. I would complain to the attending, or seek other hospital teams. At least Mayo has a standard process for evaluations that I am sure are more forthright. My husband's glio unfortunately was so deep that he couldn't have a biopsy , that ruled him out for any trials. I did have an issue with his oncologist, however and requested a separate appt with him to discuss my frustration with him telling my husband & I that it had reached the stage of perhaps 6 months, vs telling my daughter who is a nurse, that he had a matter of weeks. that was in Feb , exactly one year and month, given in the orginal dx that he had proably a year to live, It is now the end of may he is still here, but his quality is terrible. I think its very hard for them to predict, and I accepted that but the communication was poor , ie difference between us and my daughter. I find that you have to 1. advocate for you or your loved one, and also call them out appropriately when you feel you are not getting clear information. Its a difficult disease with so many types and possibilities of approved tx vs clinical trials. I do know that my hospital has a cancer rn navigator who was helpful also. All in all as the patient you have the right to change physicians, also to request not to be on teaching altho before doing so , find out other alternative hospitals. I know all this because i was a renal social worker so many patients had challenges while on dialysis with tx inconsistencies, poor communication. good luck