A Data-Driven Approach to Self-Care After a Brain Tumor Diagnosis

November 21, 2023, by Debra, Oligodendroglioma Survivor

I’m trained as a preventive medicine physician, and I now do cancer research for a pharmaceutical company. So, when I was diagnosed with an oligodendroglioma in 2016, I had all the tools I needed to take a data-driven approach to my care and treatment.

More than two decades before I learned about my oligodendroglioma, my mother was diagnosed with a different kind of brain tumor called a glioblastoma. At the time, I was living in Washington, D.C. and working for the U.S. Food and Drug Administration, so I moved back home to western Pennsylvania to take care of her. She passed away three months after her diagnosis date, which was a blessing because she was suffering. Only about five percent of brain tumors are genetic, so the fact that we were both diagnosed with one is likely just a coincidence.  

The doctors found my brain tumor in October 2016 by accident. I thought I was smelling cigarette smoke in my house, but no one in my household—neither me, my two young kids, nor my dog—smoke. I went to an ear, nose, and throat doctor, and he suggested getting a computerized tomography (CT) scan to look for a cyst in the part of my brain that notices smells. The scan didn’t reveal a cyst, but it did show a mass in my frontal lobe. 

I started contacting neurosurgeons immediately. In my opinion, more information is always better. I had six consults with six different neurosurgeons, and all but one recommended surgery. 

I chose Allan Friedman, M.D., at Duke Health. He removed the tumor in early November 2016, and I was out of the hospital after just a day-and-a-half. Once my care team analyzed the tissue, they determined it was an oligodendroglioma. Next, I needed to find a neuro-oncologist whom I trusted to treat it. I ended up consulting six neuro-oncologists in the process.

I’m a trained researcher, so I set out to learn everything I could about my oligodendroglioma. What was the best treatment approach? What were the exact steps I needed to take? I was reading research studies when I came across a recently published paper that offered a new standard of care for my tumor. I tracked down the authors of the study, one of whom currently practices at Atrium Health Wake Forest Baptist. I interviewed him and started working with him to develop a treatment plan. Atrium Health Wake Forest Baptist is about an hour-and-a-half from my house, so I enlisted a more local oncologist as well for part of the regimen I would follow.

I began with proton beam radiation and traveled to Pennsylvania to receive this treatment from January to April 2017. (At the time, there were no proton beam radiation centers in my home state of North Carolina, but Atrium Health has since contracted a partner to build one in their Charlotte facility that will be available in mid-2024.) Surgery with a goal of gross total resection and chemotherapy following radiation is standard of care for someone with my risk factors. Thus, six weeks later, I began a regimen of chemotherapy drugs: procarbazine, lomustine, and vincristine (commonly called PCV). However, I dropped the vincristine after only three infusions because I was already experiencing some nerve damage (called peripheral neuropathy). I finished treatment in October 2017 and took a well-deserved two-week vacation in Australia. I’m happy to report that, since then, I've not had a recurrence.

Scouring the Web for Reliable Sources

I’ve always liked data. I try to get my hands on as much of it as I can to inform my decisions. I have several trusted go-to resources, including PubMed, which is a free database maintained by NIH’s National Library of Medicine. It contains more than 36 million citations and abstracts from biomedical literature. You can type the name of your tumor into the search bar and skim the results to find new treatments and therapies. You can also sign up for email notifications, so search results with designated key terms will be delivered right to your inbox. 

There is a lot of online information about cancer, and not all of it is reliable. Sometimes people will just post their thoughts and opinions, which are often based on anecdotes rather than rigorously collected data. That’s why research studies are so important—they are peer-reviewed, which means other scientists evaluated the information before it was published.

Sometimes these studies can be quite technical, but they all have a simpler part at the beginning called the abstract. If you’re having trouble understanding the abstract, you can bring it to your doctor, nurse, or patient advocate and ask them to explain it. 

Whenever I find a helpful study, I share it with a Facebook group for other people with low-grade gliomas. I also volunteer with the non-profit Oligo Nation to help them advance translational medical research for others with oligodendroglioma. Oligo Nation has many helpful educational materials on their website. 

Remaining Active and Choosing to Live

Doing online research helps me feel more prepared for my appointments with my care team. When I’m informed, I can better advocate for myself. I go into each appointment with an agenda so I can make sound arguments—or at least suggestions—for the kind of care I need. For example, I might say, "Look, I'm in a lot of pain, here are the things that have helped me in the past." Or, "I'm really nauseous but I hate that drug. Is there anything else?" Do a little homework before you go, prepare a few questions, and share potential solutions or ideas. 

One of my physicians once told me, “The patients who do the best are the ones who choose to live. It's about more than just surviving—it’s about living your life and not becoming your disease.” Every day I choose to live. 

Exercise is an activity that makes me feel especially alive. I’ve always been physically active, but I knew I needed to continue to be active even after my diagnosis. I’ve found data showing that physical activity is incredibly helpful for people with cancer. I run marathons and ultramarathons, and I renovated my house and sold it to pay off my student loans. There's nothing I am not doing because of my tumor—including traveling with my kids. 

In 2020, I also joined an observational study at NIH that collects information and data from patients (such as current and previous treatments, blood samples, and self-reported symptoms) to track their disease over time. I found this observational study, called the Natural History Study, by searching for open clinical trials on ClinicalTrials.gov. This free online database is run by NIH’s National Library of Medicine and contains clinical research studies and information about their results. I emailed the study’s principal investigator, Terri Armstrong, Ph.D., and her team helped me enroll. My hope is that studies like this will generate reliable data that will help people with brain tumors, both now and in the future.