Treating a Rare Brain Cancer
- Tyler Keys is a 5 year old who is currently undergoing treatment for choroid plexus carcinoma. His diagnosis came about after a concerned teacher noticed he was having trouble reading.
- Choroid plexus carcinoma is a rare type of brain cancer that mainly occurs in children and causes hydrocephalus – too much of cerebrospinal fluid in the brain – which can lead to symptoms like nausea, vomiting, irritability, headaches, blurred or double vision, a strong desire to sleep and seizures.
- Treatment for choroid plexus carcinoma often includes surgery followed by chemotherapy, radiation therapy or both. But it’s important to know that treatment for children usually differs from treatment in adults. The Mayo Clinic advises parents of children with choroid plexus carcinoma to ask their health care provider to refer them to a specialist who handles children with brain tumors.
- SurvivorNet’s experts have guidance on how to seek out specialized treatment providers. Three resources include Clinicaltrials.gov, PubMed and the SurvivorNet Clinical Trial Finder. These websites can help you find doctors who specialize in your disease and provide information on clinical trials if you’re considering them.
Tyler’s teacher first grew concerned when the young boy had trouble focusing in class. She later had a one-on-one session with him, and she discovered something concerning: little Tyler was having trouble truly seeing and reading.Read More
“The doctors wanted to make sure everything was 100% and sent him for an MRI … Soon after they called for us and I thought we were being taken to do a blood test but they took us into a singular room without Tyler.”
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That’s when Tyler’s parent’s heard the heart-wrenching news that their little boy had a rare type of brain cancer called choroid plexus carcinoma. Today, they thank his dedicated teacher for being the catalyst to getting Tyler such a crucial diagnosis.
“We kept saying thank you so much because she effectively saved his life,” Jenna said. “If it went on undetected for any longer it would have been much worse.”
Treatment began with a successful surgery to remove the tumor that was now the size of a golf ball, but Tyler will need more treatment.
“He had his first cycle [of chemotherapy] … and we have a three-week break then back for five days, then three weeks break and so on,” Jenna said. “Up until now he’s done really well and still active and still cheeky but he still does get scared with any intervention.”
If you’d like to learn more about Tyler’s story or help support the family, visit the the family’s GoFundMe page, set up by Tyler’s school.
What Type of Brain Cancer Does Tyler Have?
Tyler’s diagnosis was choroid plexus carcinoma – a rare type of brain cancer that mainly occurs in children.
According to the Mayo Clinic, choroid plexus carcinoma starts as a growth of cells in the part of the brain called the choroid plexus. Cells in this location produce a fluid, called cerebrospinal fluid, that surrounds and protects the brain and spinal cord. When choroid plexus carcinoma grows, it can create too much of this fluid in the brain, which is known as the condition hydrocephalus.
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Knowing what signs and symptoms to look for in childhood brain tumors can be tricky and are not always easy to spot. When it comes to recognizing symptoms in kids, Tyler’s teacher is an incredible example of recognizing when something is off with a child. Her attention to his behavior helped him get the diagnosis he needed.
The signs and symptoms of a brain tumor in children, according to Johns Hopkins Medicine, include:
- Nausea or vomiting
- Blurred or double vision
- A fuller soft spot on the skull in babies
- Abnormal eye movement
- Slurred speech
- Trouble swallowing
- Loss of appetite
- Trouble with balance or walking
- Weakness or loss of sensation in an arm or leg
- Memory or hearing problems
- Irritability, personality, or behavior changes
If you notice any concerning changes to your child’s health, talk to a doctor right away. You never know when speaking up can lead to a very serious diagnosis.
Seeking Specialized Care for a Rare Disease
Treatment for choroid plexus carcinoma often includes surgery followed by chemotherapy, radiation therapy or both. But it’s important to know that treatment for children usually differs from treatment in adults.
The Mayo Clinic advises parents of children with choroid plexus carcinoma to ask their health care provider to refer them to a specialist who handles children with brain tumors.
Websites like Clinicaltrials.gov and PubMed may be good places to start when trying to find specialists for rare diseases. When you search your disease in these databases, you will see a list of studies and articles specifically about the cancer. By looking at the doctors associated with these published clinical trial results or other articles, you may be able to find doctors that specialize in research for your disease.
It’s also important to seek out a medical center that has experience with this cancer and can offer the latest treatment options for your child. And that might just be at a comprehensive care center.
Seeking Care at a Comprehensive Cancer Center
Dr. Kenneth Miller, director of outpatient oncology at the University of Maryland’s comprehensive cancer center, explained what differentiates a “comprehensive cancer center” from other treatment providers.
“Pretty much automatically, there’s going to be a team approach [to your care],” Dr. Miller said. “Surgical oncology, medical oncology, radiation oncology, and all the support services—and also wonderful pathology and radiology.”
Also, if you’re considering enrolling yourself or a child in a clinical trial, visit clinicaltrials.gov, PubMed or the SurvivorNet Clinical Trial Finder. Our user-friendly tool is updated daily and gives users access to more than 100,000+ individual clinical trials to help them find treatment options.
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“Clinical trials are critical to the development of new therapies, and as we live through this extraordinary revolution in genomics, immunotherapy and targeted therapy, it’s clear that one of the most pressing needs for patients, clinical trials sponsors, and researchers is simply a better way to find patients,” SurvivorNet CEO Steve Alperin said. “Even one percent more people successfully enrolled in clinical trials can change the world.”
Clinical Trials and What Statistics Really Mean
Clinical trials, themselves, are research studies that compare the most effective known treatment for a specific type or stage of a disease with a new approach. Joining a clinical trial does not necessarily mean you will get the best possible treatment, but it does mean you’re serving a larger pruspose.
“Clinical trials hopefully can benefit you, but is also providing very, very vital information to the whole scientific community about the effectiveness of these treatments,” Dr. Beth Karlan, a gynecologic oncologist with UCLA Health, previously told SurvivorNet. “We need everyone to be partners with us if we’re ever going to truly cure cancer or prevent people from having to die from cancer.”
Overall, it’s more than understandable to feel overwhelmed if you or a child has been diagnosed with a rare disease. But know there are resources out there to help and places to turn to for expertise and advise. Consider getting multiple opinions and always ask your healthcare providers plenty of questions.
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