Recently, I updated my personal situation relating to my brain tumor. Long story short, as of now, everything is stable. I have more scans in April, but the interesting news is that I learned I’m the only person identified in the United States with a particular genetic mutation in my tumor. I’m one of four in the world.
I learned this because I participated in clinical research. Experts are trying to create a brain tumor genetic database. I agreed to let them genetically map my tumor because I was hoping it would provide me with information that could help me make better treatment decisions down the road. Instead, I found out I’m a unicorn.
It doesn’t mean I’m the “only one.” It just means I’m the only one they’ve discovered so far. I know this research won’t help me, but it may help someone in 10 to 20 years as treatment turns to more personalized care.
I did learn that I did not inherit my tumor from my father, who also had a brain tumor. I also discovered I have a genetic marker that qualifies me for a clinical trial of a pancreatic cancer drug they’re now studying on brain tumors.
But since I’m stable, I don’t need to do anything for now, but at least I know I have another option.
My story has been shared often, especially among those dealing with brain tumors across the country.
Shortly afterward, I received a call from a woman who was recently diagnosed. I completely understood the fear and uncertainty she was dealing with because I had experienced it, too.
She already had meetings with her physician, but she told me she didn’t like his “bedside” manner. She said she felt intimidated by him, and while her case was being looked at by a “team” approach, she felt like he was going against the advice of the rest of the medical experts, and she had concerns.
She felt trapped and felt like she couldn’t say anything. She feared offending the doctor.
For many, medical care is an unequal power balance. Many feel paralyzed to speak up and share their concerns because their doctor may be dismissive or simply just won’t listen.
Studies have shown this is a real risk. It’s called Hostage Bargaining Syndrome.
It’s easy to feel helpless and confused and fear that your doctor will consider you difficult and not provide adequate care.
There are solutions.
I’ve often said, we must be our own best health advocates because no one will take better care of you than you.
But when faced with a dire diagnosis, it’s often difficult to navigate through a new world of medical terminology and the confusion a diagnosis may create.
While most doctors are brilliant at their jobs, there are some who can be condescending, egotistical or arrogant to both patients and staff. No one should tolerate such behavior, especially a patient.
If possible, always bring someone with you to your appointments. Having a second set of ears listening is always helpful and that extra support may also help diffuse confrontation.
Doctors are usually under time constraints, but those who deal with dire diagnoses usually take extra time with their patients.
That said, don’t waste your or your doctor’s time. Bring a notebook and a list of questions to your appointments to manage the time you have efficiently.
I often send my questions to my doctor ahead of time through my electronic medical record so they can have answers ready, or even answer my questions before I see them.
It also works for when I forget to ask something, but be aware Cleveland Clinic may now charge your insurance for messaging services that take the doctor more time to answer.
I always record my discussions with my doctor. Most of us have smartphones that have voice and/or video record options. This is invaluable when you need clarification of something they said and simply can’t remember.
If you have a doctor who has issue with recording the appointment, find another doctor.
If your doctor tells you something that completely goes over your head, ask them kindly to explain in layman’s terms so you don’t have to “bug” them later.
It’s important to remember that your doctor “works for you,” not the other way around. You can always ask to see another doctor in the practice or go somewhere else if you have insurance that permits you to have wider choice.
But if you don’t have a choice, you do have other options.
You can always send your doctor a letter through your electronic medical record and spell out your concerns. Not only do they hear from you, there’s also a written record.
Try talking to their nurse or health care provider who works with them and share your concerns. They may be better positioned to help you anyway.
While rude behavior is never OK, in defense of doctors, many are overworked and exhausted. Recent studies found nearly one in two physicians have at least one symptom of job burnout and the COVID-19 pandemic certainly didn’t help.
But if your doctor yells at you or insults you, take the high road and don’t get emotional. Do your best to stay calm and professional.
You can always disarm them by asking what you may be doing wrong. There’s always a chance they don’t even realize they’re being a jerk.
If all else fails, talk to their superior and file a formal complaint with the hospital or the state medical board. The State Medical Board of Ohio’s confidential complaint hot line is 833-333-7626.
Monica Robins is the Senior Health Correspondent at 3News. The information provided in this column is for educational and informational purposes only. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition or treatment and before undertaking a new health care regimen. Never disregard professional medical advice or delay in seeking it because of something you have read in this column or on our website.
