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Medulloblastoma Survivor Shares 5 Tips to Overcome a Rare Diagnosis

, by Ken, Medulloblastoma Survivor

Ken

Ken

Credit: NCI-CONNECT

Ken is an 18-year rare tumor survivor. Although his treatments caused long-term side effects, he shares why he believes he is lucky to be alive and his hopeful advice to others.

In 2002, at 32 years old, I was diagnosed with medulloblastoma, a type of rare brain cancer. I was serving as a lawyer in the United States Navy at the time and having terrible headaches. I visited the doctor multiple times. Then, one Saturday night the pain was so intense, I went to the emergency room (ER).

I had a CT scan in the ER. The attending doctor came in and showed me the results. There was a big white blotch on my scan. I am not a doctor, but I thought, “that doesn’t look cool.” The doctor called the neurosurgeon who told me not to leave. “I’ll be there soon. Heaven forbid he falls into a coma. It is going to be a lot harder to operate on him.” 

I had a full surgical resection to remove the medulloblastoma in the back of my head near my cerebellum. My care team in the military – neurosurgeon, oncologist, radiologist – collectively had seen one medulloblastoma in an adult in their careers. After surgery, I was referred to reputable hospitals for second opinions and the consensus was chemotherapy and max dose radiation.

Medulloblastoma Survivor’s Journey

Now, I am 50 years old, retired from the U.S. Navy in 2016, and started working for the U.S. Department of Justice in 2018. That’s how I recently found NCI-CONNECT. I was referred by my neuro-oncologist, Brett Theeler, M.D., at Walter Reed National Military Medical Center. Now, I have the opportunity to be part of research to make treatments better for people with rare brain and spine tumors. I don’t drive because of damage to my optic nerve, I have slightly slurred speech and my short-term memory is not what I want it to be, but I am lucky to be alive. Here is my advice to others recently diagnosed.

  1. Be Hopeful and Positive: Be optimistic and hopeful. Pessimism will kill you. I completely understand that it [a rare brain or spine tumor diagnosis] is a stunning thing that happened to you. But if you don’t go at it strong and with a positive attitude, it will be trouble. I am very fortunate to be alive. I know that every single day I am blessed to be here. It reminds me of a recent Medal of Honor recipient who said, “Every day is a bonus.”
  2. Find Support: After my diagnosis, my mom and dad came and stayed with me the whole time I was in the intensive care unit. When I left the hospital, a friend took me in. I had family (brother, sister, nephews and nieces) and friends come over every day to check on me at home. A lot of family and friends visited me when I was in the hospital, too. The U.S. Navy also sent someone over to my house every day to check on me or have lunch with me. I jokingly called this the “death watch”, but it really wasn’t. It was to make sure I was O.K. and I was very grateful for it. I am sure that if I didn’t have support, I would have died.
  3. Stay Informed: I was fortunate to receive a lot of good information when I was diagnosed and be referred to great places. Doctors should speak to you in non-doctor language, so you understand your diagnosis and treatment options. I am a lawyer, so when I talk to people who aren’t lawyers, I speak in non-lawyer terms. If you don’t understand, ask questions. I also moved around to different hospitals based on where I was deployed. At each location, I made sure I had someone to monitor me.
  4. Focus on Being Healthy: When I was diagnosed, I was fortunate to be in the best physical shape I could be. I was running half marathons [13.1 mile races] and I think that was important to help with recovery from surgery and the side effects of my treatments. Chemotherapy and radiation can be hard and toxic on your body. I call chemotherapy the poison that saves you. I also found acupuncture helped stop my vomiting, at least for a little while.
  5. Appreciate Your Care Team: Once a year I send a card to my doctors to thank them for everything they have done for me. I would definitely not be alive without them. Also, be patient with your doctors. I realized at one of my appointments that the reason I had to wait so long to see my doctor was because he was spending time talking to his patients and allowing them to ask questions. I now accept my doctors taking all the time they need to talk to others.

In closing, anything I can do to help find a cure, I will do. My side effects are a small price to pay to be alive.

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