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

Discussion
Comment receiving replies
@dbcondrey

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

Jump to this post


Replies to "Are you able to consider another hospital that has a neuro oncology team while all of..."

So, I am scheduled at Mayo June 12--still need to figure out if Medicare will cover everything. I don't have enough support locally, so I need more support and not to be seen at a teaching hospital. I want to talk honestly with them whether standard treatment is wise at this stage. I've felt paralyzed--haven't moved off the couch for about a week. I'm really struggling.

Yes, I decided to come to Mayo. An academic attending in radiation oncology--on Reddit said it was ludicrous (he used a stronger word) that I'd be treated by a first year resident. Also, my closest friends have all moved, and I can't manage by myself, so I'm hoping for support at Mayo.

It's so interesting that you were a renal social worker. I was just talking with my parents yesterday. My father is a neurologist with a special interest in dialysis, and my stepmother was a dialysis tech and then they bought--or however it works--dialysis clinics that they ran working with Fresenius. My stepmother was telling me how helpful and necessary the social workers are. They toured the dialysis clinic at Mayo to see how they were doing things.