Brain Tumor Survivor Offers Patient-Doctor Collaboration Tips

Collaborating Doctor

From the Philadelphia Inquirer

Our bodies are the only vehicles we are given in this life. The instruction manual can sometimes be vague and require updates, but no one knows more about our bodies than we do.

As a brain tumor survivor, and now a patient advocate, one of the biggest questions I get is this: How do I find a doctor who will collaborate with me?

I have had many interactions, mostly positive, with doctors and other health-care professionals. The best relationships with them stem from me learning to be my body’s own advocate and knowing that I am the best person in the room to be that champion.

Having the support of a collaborative health-care professional is critical to my health-care plan and mental ease. So how do I foster these relationships? Some are easier than others, and some I am still working on.

After I was diagnosed with my brain tumor, my initial treatment plan was ‘watch and wait’ – meaning yearly MRIs to monitor the tumor growth. When my specialist told me I no longer needed yearly MRIs, I felt unsettled.

But I didn’t question the decision, because I was still new to learning to be my body’s best advocate. Still, I raised the concern with my primary physician and we collaborated on seeking a second opinion. Ultimately, this decision was critical to my treatment plan. Never again would I doubt the importance of being a real partner with my doctor for the benefit of my body and brain.

-I let my providers know that I was keen to work with them to find a win-win solution for my condition. I spoke to them about the areas I wanted to discuss and hear their thoughts on.

-I kept records of all my medical visits, so each new provider had a holistic perspective on my total health-care plan.

-I kept notes of my symptoms, medications and any other information that I thought would be useful for them to know.

-I treated my appointment like a business meeting and set an objective in my mind before I went in. That removed the emotional aspect for me and helped me feel more in control.

-In the days leading up to the appointment, I kept a running list of questions I wanted to ask so I could ensure that we covered everything – especially the most important issues.

-If something didn’t feel right about my treatment plan, I spoke to the doctor about it.  It can feel difficult to confront a doctor about a plan they clearly think is right. But I always reminded myself that this was my body and brain. After an honest chat, positive change – or at least better understanding — was usually the end result.