Neuro oncologist not including me in care

[Anonymous]

I’m at MD Anderson for neuro oncology “care”. I am hearing that there is a team assigned to me, but I do not know all the members of that team and I do know I am not a member of that team. This has caused me extreme anxiety. Extreme.
I do not know who is behind my treatment plan and I do not know how decisions were made, and who made them. I have an arrogant egotistical oncologist, who seems to gatekeep my Medical information.
Today we looked at some notes that he put in our chart from an appointment we had and he is claiming things he discussed with us that he never did discuss with us. I had an appointment with him where I was very direct and very frustrated while trying to get information out of him. He has the personality of someone who sucks the oxygen out of the air.
Every brain tumor is different and it’s a very fluid situation. The treatment of brain tumors is unlike any other tumor in the body.
I cannot and will not ever accept that. I am not part of my treatment plan. However, I get the since I’m just pissing this oncologist off, and he is defending himself by falsifying his notes in my file.
Since he is not offering any information or discussing my options, I have gone online and cut and pasted my test results into ChatGPT. Again, every tumor is different.
I would appreciate any advice anyone could give me to cope with this situation. I do not live in the DC area, but rather a place where there is only one local Neuro oncologist at our local MD Anderson branch.
Better yet, what would you consider the best neuro-oncology center or Neuro oncology doctor to go to? I am willing to travel anywhere in the United States.

[Anonymous]

I have to disagree and say that there is no way your oncologist is falsifying notes into your EMR. Per you, there is a brain tumor at play here and reality and perception is quite likely affected. Please have family present for all discussions and have them take meticulous notes during each interaction

[Anonymous]

Hello! I am also under the care of an oncologist, but for a different cancer. My cancer is quite aggressive and per my oncologist, my case is "complicated." I wonder if your oncologist was talking about a tumor board? Basically, my oncologist will discuss her tricky cases with other oncologists (could include other medical professionals too) - they call it a "tumor board." It can be jarring when my oncologist will say, "I was talking about your case this morning..." and you don't know who she spoke to or what they said. But they do it so they can be sure their recommendations are sound, that they aren't missing anything, etc.

I echo PP - have a family member or friend present at all appointments, if possible. I brought a good friend who typed notes during my appointments.

I am also not in the DC area anymore - I go to Duke Cancer Center and think they are excellent. I have heard very good things about their Brain Tumor Center. https://tischbraintumorcenter.duke.edu

[Anonymous]

Anonymous wrote:I have to disagree and say that there is no way your oncologist is falsifying notes into your EMR. Per you, there is a brain tumor at play here and reality and perception is quite likely affected. Please have family present for all discussions and have them take meticulous notes during each interaction

Yup, he tried to pull the same response. My husband has been present every step of the way and he is very qualified for taking in all information as well as take notes.

[Anonymous]

Anonymous wrote:Hello! I am also under the care of an oncologist, but for a different cancer. My cancer is quite aggressive and per my oncologist, my case is "complicated." I wonder if your oncologist was talking about a tumor board? Basically, my oncologist will discuss her tricky cases with other oncologists (could include other medical professionals too) - they call it a "tumor board." It can be jarring when my oncologist will say, "I was talking about your case this morning..." and you don't know who she spoke to or what they said. But they do it so they can be sure their recommendations are sound, that they aren't missing anything, etc.

I echo PP - have a family member or friend present at all appointments, if possible. I brought a good friend who typed notes during my appointments.

I am also not in the DC area anymore - I go to Duke Cancer Center and think they are excellent. I have heard very good things about their Brain Tumor Center. https://tischbraintumorcenter.duke.edu

Thanks. I was considering Duke. I need to know my treatment options and be involved in decision making. A cancer center can only offer what they have available to them limiting resources. It’s great to have all the resources at Duke.
I wish you all the best.

[Anonymous]

I have a friend who had brain tumor removal at Mayo Clinic. They were her second opinion. The first opinion recommended opening the skull to remove the tumor. Mayo Clinic was able to do the surgery with a minimally invasive technique— I believe they went in thru her sinuses, if I remember correctly. All cases are different but definitely get a second opinion.

[Anonymous]

Ask to speak to a social worker there and request care coordination. You mayslread have a social worker and I would reach out to talk to them.

[Anonymous]

Friend has been under the care of Dr. Cohen at Inova Fairfax for glioblastoma for the past year and LOVES him. Not sure whether he’s specifically neuro oncology, though.