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NCI-CONNECT Rare Brain & Spine Tumor Network
 

What to Expect During and After Radiation Treatments

, by Nick, Ependymoma Survivor

Nick

Nick and his wife, Nicole

Credit: NCI-CONNECT

Nick had four surgeries and multiple radiation treatments to treat his ependymoma tumors. He shares what to expect during and after radiation and how cancer changed his outlook on life.

In 2004, when I was 12 years old, I had severe back pain and spasms. When I laid down at night, I experienced episodes where I couldn’t move for 10 to 15 minutes. Since my father was in the medical field, he knew something wasn’t normal.

An MRI showed a 12-centimeter grade I myxopapillary ependymoma inside my spinal column in my lower lumbar. After emergency surgery, the doctors reported they removed all the tumor except for a couple of very microscopic spots.

A couple years later, follow-up MRIs showed growth and I had a second surgery. During my recovery, I wore a back brace for six months and was not able to participate in any physical activities for almost a year. That was the hardest part as a kid. I was playing basketball the second after doctors cleared me for activity.

Two years later, around age 14, an MRI revealed spots had grown for a third time. I had surgery on my lower lumbar, followed by proton radiation. At the time, only eight centers in the United States performed this type of radiation. Luckily, one of the centers was within driving distance to my home. So, for two-and-a-half months that summer, my mom spent three hours every day driving me to radiation.

Once treatment ended, I was a normal kid with clear scans for the next ten years. We all thought my health challenges were over. However, at age 26, during my last scheduled MRI, the doctors discovered a growth. This was devastating, but in hindsight, we were glad we caught it. Doctors were concerns about what treatment to do now. I had a lot of scar tissue from previous treatments and re-radiating could cause possible complications. I was not sure what to do.

Finding Premiere Experts and Care

I visited many specialists and consulted numerous reputable cancer centers around the country. Through a referral, I contacted neuro-oncologist Mark Gilbert, M.D., of NCI’s Center for Cancer Research Neuro-Oncology Branch and a specialist in rare neurological cancers, in November 2018 to schedule an appointment at NIH.

Before visiting NIH, I had a full body MRI with my local doctor who discovered multiple tumors in the lumbar, thoracic, and C1 vertebrae near the base of my brain. I had an emergency thoracic spine surgery locally.

A few months after my fourth surgery, I had an MRI at NIH and talked to Dr. Gilbert about treatment options. Asking Dr. Gilbert and his team specific questions about my case really helped calm my fears, provide guidance, and trust that I would receive the best care possible. His team acknowledges there is a person going through a difficult time. Together, we developed a plan that included craniospinal radiation – full body radiation to the brain and spine – in Houston for six weeks.

It took me six months to fully recover from surgery and radiation as physical therapy was rather challenging. Post-surgery, I experienced difficulty walking, had to use a cane for a week or so, and still have neuropathy in both of my feet.

My biggest goal was to be healthy enough to get married to my beautiful fiancé (now wife), Nicole. My wedding was planned for June 2019, so this helped motivate me to push forward and never give up.

Now, at age 28, I’ve learned to understand and appreciate the difficult times as this makes the happy moments in life even more enjoyable. My scans continue to show no evidence of disease.

Nick

What Happens During Radiation

The treatment is normally Monday through Friday and lasts about 45 minutes. A lot of time is spent getting your body in the right position, so the radiation hits its desired locations. You lay down on a custom-molded table. A technician positions your body using lasers and measurements. When you are aligned, a mouthguard and wired head case are placed on your body to ensure you do not move. This may seem scary, but this ensures the radiation does not hit healthy areas.

The radiation takes a couple of minutes. You can sense when the radiation hits your body if you receive radiation to your brain. Some patients see colors, others smell specific scents, and some, like me, can taste it – it is not very pleasant – but it is all normal. If the radiation does not touch your brain, there is no feeling or sensation, almost like it isn’t there.

What Happens After Radiation

Radiation side effects are different for each person. You may be able to exercise or perform your ‘normal’ activities. Or you may not. Side effects also tend to get worse as more treatments are given. I lost my hair, experienced a great deal of fatigue and nausea, and skin dryness on treated areas. When these changes happen, acknowledge your side effects and react. No one expects you to go through treatment and act like it doesn’t affect you. Once treatment is over, your body quickly adjusts to its normal self.

Radiation side effects are also different based on location. When I had radiation to my spine, I played baseball and rehabbed. When I went through craniospinal treatment or full body radiation, I exercised some, but had fatigue, general uneasiness, and internal side effects. Radiation to your brain causes hair loss, but over time it grows back. As your hair grows again, so will you.

Remember, during and after radiation treatment, listen to your body, ask questions, acknowledge side effects and adjust.

Advice for Others

After four surgeries and multiple radiation treatments, I live with neuropathy in my feet, nerve damage to my legs, and drop foot on my right foot. I also have radiation retinopathy in my eyes. I go to rehab regularly and receive shots in my eyes to help my vision and reduce swelling.

Going through cancer for so long, you have to live through every single hard day to put things into perspective. My life is now as close to normal as possible. I have what I call, “normal people problems,” and less and less health-related concerns. Just know, you are never alone.

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