High grade glioma: waiting for remainder of molecular testing

Great to know that Medicare pays for it. That was a MAJOR concern for me as my husband will be going from BC/BS to Medicare when his short term disability runs. Thank you!

We went through the same range of feelings 4 months ago. Now my husband doesn't know how he found the time to work!
Take things one day at a time; one step at a time. Keep a calendar; keep lots of notes - and categorize them. We have a great care team, which has helped tremendously. They really work as a team!

I wish you well. You can do this! It is a bump in the road of life - a BIG bump, but a bump, and no doubt you've been through bumps in the road before.

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.

just make sure your team is aware of the criteria that medicare requires for payment, we started too late and medicare even after several appeals by optune rejected it for their payment. Optune assured us that we would not get a bill and medicare repeatedly told us this as well. We have not received any payment but optune i think should have known the criteria from the beginning which is it has to be started within a short period following concomitant radiation and chemo. Make sure you are clear with optune about this. We had opted to do a cruise with family so we didn't feel ready to start it until 3 months after the soc was completed medicare rejected their appeals, stating it has to be i think within 6weeks, not sure of exact time , but we were well over that criteria. good luck

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

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.

Hi Colleen,

University of Michigan Hospital was a bust. I have an appt at Mayo--Rochester location--on June 12. I am on the waitlist.

The headaches are getting worse, so I started Dexamethasone today. My primar issue at the moment is just getting out of the house because I can't stop thinking about the tumor.

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.

Where do you recommend buying scarves that won't fall off by mistake. I looked at the Mayo site and American Cancer Society. I know I saw nice ones on a cancer website

sometimes its a small world. isn't re commonality with dialysis. yes social workers are mandated by medicare to be in all clinics, i worked at fresenius for the first ten years of my career. Then that clinic was bought out by a small group which later sold it out to Davita, but i opted to leave to go to American Renal clinic which was previously owned by FMC. I worked in Rhode Island a small state but with alot of dialysis clinics, however, i preferred the medical practice associated with ARA, so i returned to my roots so to speak. From the way you describe yourself, it sounds as if you are from out of the country is that true, I am glad you are choosing Mayo, you will access to support services, through their team, altho its tough to be away from family especially for transport to appts etc. Interesting that a neurologist has an interest in neprology. well good luck with everything