Midline Glioma Cancer Survivor Joins Study to Help Others
, by José, midline glioma tumor survivor
José shares how he learned about his rare midline glioma cancer in his spine and why he chose to participate in a clinical study to help others.
In early 2018, at age 59, I was hit with unexpected news. After experiencing back pain, I visited a chiropractor who realized one of my legs was weaker. I went to see my doctor who ordered an X-ray and sent me to physical therapy; however, the symptoms worsened with numbness and more weakness in my left leg. I had an MRI, which showed a tumor in my spinal cord; it required surgery.
My radiologist reported it was likely a non-cancerous ependymoma. I felt positive and hopeful. Surgery would fix my problems and things would go back to normal after recovery. In May, I had surgery near my home in Seattle. A week later, I was recovering at home when I got a call from my neurosurgeon. Lab results showed my diagnosis was worse than expected. I had a grade IV rare spine cancer known as midline glioma.
I was shocked. I didn’t know what to think. My mind was racing: This is not real. It was supposed to be something different. It was supposed to not be cancer. I hung up the phone and told my wife. We sat very quiet for a moment. At dinner that evening, we told our two daughters, now ages 19 and 23. Telling my girls was one of the most painful moments in my life. We held hands, we cried.
I needed time to process the information. The next day, I started doing a lot of research on the type of tumor and treatment options.
Finding Treatment for a Midline Glioma
I was referred to an oncologist in Seattle who confirmed that my case was very unusual. There was very little information she could draw from research and other cases. Only 447 adults are diagnosed a year in the United States and most are in the brain. This was not a good thing for treating my cancer.
I had six weeks of radiation therapy and chemotherapy, which started July 2018. It was hard. My symptoms barely improved after surgery and got worse during and after radiation. I had more difficulty walking and my left foot dropped. This was all very discouraging.
More tough news came at the end of the radiation treatment. A follow-up MRI showed two spots were re-growing in my spine. I was put on another treatment. I requested to see a neuro-oncologist and was able to meet Jerome Graber, M.D., at the University of Washington Hospital, Alvord Brain Tumor Center. [A participating Brain Tumor Trials Collaborative center.] We talked about research studies and experimental treatments. He suggested I contact the Neuro-Oncology Branch at NIH. I emailed the branch Chief Mark Gilbert, M.D., who invited me to the NIH clinic for an assessment.
Participating in the Natural History Study
In October 2018, I met Marta Penas-Prado, M.D., Associate Research Physician in the Neuro-Oncology Branch at NCI, for a first assessment. I learned there about the Natural History Study, which isn’t a treatment trial, but a study that surveys and monitors my health. Researchers also collected my saliva and tumor tissue for testing.
I know the study won’t help treat my cancer but gathering information about my rare tumor provides insight that hopefully will help other patients in the future.
Every eight weeks, I travel to the NIH in Bethesda, Maryland, for MRIs and assessments. Dr. Penas-Prado and her team review my cancer with me and offer recommendations.
Then, my NIH team sends the information to my neuro-oncologist Dr. Graber in Seattle. He and I meet every month to discuss the MRIs and the report from NIH. The fact that I have two teams of compassionate and smart doctors makes me feel really good.
Adjusting to My New Normal and Feeling Grateful
I recently completed seven cycles of chemotherapy. My midline glioma tumor is stable. I use a cane to walk since I have numbness in both feet that goes all the way to my buttock on the right leg. I also have a dropped left foot. It is not easy, but I have adjusted my life accordingly. I go by the moto to face my challenges and be grateful for the good things life has given and still gives me.
I went back to work, but do not travel as much. I do a lot of work from home. I exercise and swim frequently and go on walks with my wife. My family has adjusted as well. We try to live a normal life. I have two wonderful daughters, who together with my loving wife have been my life support system in this journey.
You never know what life is going to throw at you. I grew up in Bolivia. I studied in Germany and got my doctoral degree in Minnesota. I have traveled and lived in many places across the world. I have been married for 24 years and have raised two beautiful daughters. Never in my life did I think I would have cancer.
Face whatever challenge is in front of you mindfully. Find the positive. You will have moments of disappointment, depression, anger, and sadness. But accept them, let them go again and get support.
I recently celebrated my 61st birthday and am grateful to still be here. I hold onto the encouragement, support, and positive messages from my family, and my two brothers and my sister, my friends, and the blessings that surround me. I hope sharing my story encourages others to stay positive. Don’t let cancer control your life.