Four-time PNET Survivor Shares Coping Tips
, by Dunamis, PNET survivor
Dunamis was age four when she had her first surgery to remove a brain tumor. 15 years and four surgeries later, she finally received an accurate diagnosis: primitive neuro-ectodermal tumors (PNET). She shares how she positively copes and finds hope.
I’ve had four brain surgeries to remove brain tumors that kept coming back. I vaguely remember the first one because I was only four-years-old. My third surgery, at age 8, had the most impact. I was told my tumor was an ependymoma, a rare brain tumor. Also, the surgery was complex. I woke up barely able to move the right side of my body.
After surgery, life was getting back to normal – I was walking and learning how to use my right hand, again. Then, I had a seizure at school on my 10th birthday. The seizures kept occurring. After various tests, my neurologist told us scar tissue from surgery was the cause of the seizures.
My teen years were full of doctor’s appointments and occasional MRIs. I was healthy enough to go to college out of state. I enjoyed it until late 2015 when I had a grand mal seizure and had to move back home. I finished my undergraduate degree online and graduated in May 2018. I started a summer job in June.
Then, I noticed strange symptoms, such as smelling oxygen and losing feeling in the right side of my body. I also had a hard time remembering tasks and trouble with my executive function skills, like planning, focusing and multi-tasking. I thought my body was trying to tell me to take it easy.
Late June, I had an MRI as part of my routine check-up. Something was wrong. I was referred to the NCI’s Neuro-Oncology Branch at NIH in Bethesda, Maryland, for furthering testing. There, I learned I had a tumor in my left frontal lobe. At first, I didn’t know how to react. I couldn’t believe the tumor was back after 15 years!
I was about to start graduate school. I thought the worst parts of my life were behind me and my real life was finally beginning. The recurrence took a while to process.
Getting an Accurate PNET Diagnosis
I didn’t want to have another surgery because of the repercussions of the third one. I was almost paralyzed and diagnosed with epilepsy. Also, I had my hopes set on starting graduate school and taking classes on campus. Yet, my headaches got worse and I was nauseated often.
I had my fourth brain surgery at NIH in September 2018 with Dr. Kareem Zaghloul. After the surgery, I thought everything would be great. I thought I would go home within two or three days. Instead, I had two seizures in the ICU. I felt excruciating pain. I pleaded with God to just take me so the pain would end.
The next few days were torture. I vomited multiple times the day I was discharged. My mom wanted me to stay in the hospital longer, but I was adamant about going home to sleep in my bed. The next few weeks were painful and perilous. I couldn’t sleep or eat, my head swelled, and I vomited every day, sometimes twice a day. Later, I was diagnosed with hydrocephalus, a condition in which excess cerebrospinal fluid builds up within the ventricles of the brain.
My doctors didn’t want to rush me to surgery, which I’m thankful. I was prescribed medications and my doctors waited and watched my symptoms. I was on 10 different medications, some were anti-epileptics, some were to help treat the hydrocephalus, while others were to help me deal with the effects of the surgery. After weeks of watching, the swelling and pain went down, and surgery wasn’t needed anymore.
A few months later, NCI’s neuro-oncology team told me and my family that my brain tumor was not ependymoma, but a high grade neuroepithelial tumor with MN1 alteration, meaning I had a new, very rare type of Primitive Neuro-Ectodermal Tumors (PNET). [Editor note: PNET stands for a group of tumors. These tumors are currently being reclassified and given other specific names based on their molecular features.]
Learning Positive Coping Strategies
After learning about my new, very rare PNET diagnosis, I read a lot of educational information on the NCI website and in its journal articles. Only 129 people are diagnosed per year in the United States with PNET. I joined NCI-CONNECT, a program within the Neuro-Oncology Branch at NCI focused on rare brain and spine tumors.
As part of the program, I attended a CARES (Coping, Advocacy, Relationships, Education, Support) group meeting with my mother. There were other patients and caregivers in attendance, too. NCI-CONNECT Health and Wellness Counselor, Alvina Acquaye, presented on how the brain and body can still be psychologically and physically affected by a tumor even after it’s been removed.
One of the subjects we talked about during CARES that really affected me was depression. For months after surgery, I shut down mentally. Simple tasks like getting out of bed to brush my teeth or to take a shower were challenging.
Talking with other patients helped me feel like I wasn’t alone. I also felt much more comfortable talking about my psychological and physical challenges with them rather than with my medical team or even my parents because I knew the other patients had experiences like mine. We could relate to each other. We talked freely during CARES and it provided a comfortable and supportive environment.
Being part of CARES has taught me a lot, especially about how to deal with anxiety. I have learned the different tools and methods one can use to feel better. Personally, I use music. Music, especially classical and worship music, always helps when I have a headache or an aura. I’ve learned that sometimes I count my fingers to cope, too.
If you’ve recently been diagnosed or are going through the process of getting back on your feet, there is hope.
Beyond the pain, confusion, agony, bitterness, there is hope. There are various groups, such as CARES, where one can understand they aren’t alone. Also, surround yourself with family and friends who will share words of wisdom and encouragement.