Neuroblastoma forms in the developing nerve cells, or neurons, of the sympathetic nervous system. The sympathetic nervous system is part of the autonomic nervous system, which helps control body functions like breathing, blood pressure and digestion.
According to the American Cancer Society, about 700 cases of neuroblastoma are diagnosed each year in the United States. This accounts for about 7% of pediatric cancers.
The most common cancer in infants, neuroblastoma is the fourth most common in all children. It almost always develops before age 5, and the average age of diagnosis is between 1 and 2 years. Occasionally, it can be seen in an ultrasound before a baby is born.
Neuroblastoma formation
Most neuroblastomas develop in the adrenal glands, abdomen or nerve cells next to the spinal cord, called ganglia. They also can occur in the neck, chest or spine.
Some neuroblastomas grow quickly; others grow slowly. When neuroblastoma develops in infancy, it often is less aggressive and can even become benign. In children over 18 months, it tends to be more dangerous.
If neuroblastoma grows in the process of treatment, it is called progressive neuroblastoma. If it comes back after treatment, it is called recurrent neuroblastoma. The pediatric cancer specialists at Children¡¯s Cancer Hospital have an exceptional level of expertise in treating all forms of neuroblastoma.
Learn more about neuroblastoma:
In rare cases, neuroblastoma can be passed down from one generation to the next. Genetic counseling may be right for you. Visit our genetic testing page to learn more.
Olfactory neuroblastoma didn¡¯t stop this survivor from achieving his goals
When Justin Masse was diagnosed with a type of skull base tumor called olfactory neuroblastoma, he wanted to learn everything about this rare cancer. He read every article he could find and joined a Facebook group for people with the same diagnosis.
His symptoms started one morning when he woke up, unable to breathe out of one of his nostrils. When a week of steroids and antibiotics didn¡¯t help, he visited an ENT, who said it was nasal polyps. After a minor surgery, Justin was able to breathe again. But when he got a call from his ENT late on a Friday, he knew something was wrong.
¡°They¡¯d sent my tissue samples to pathology as a precaution, and the preliminary results weren¡¯t good,¡± he recalls.
He received his official diagnosis that Monday.
¡°The head and neck specialist I was referred to wasn¡¯t sure at first if they could do surgery to remove my tumor, but all the articles I¡¯d read said that you need surgery to have a good prognosis,¡± says Justin, who lived in Florida at the time.
So, he posted in the Facebook group asking if anyone had had surgery. Several people responded, saying that they had seen head and neck surgeon , at MD Anderson.
¡°As I continued researching, Dr. Hanna¡¯s name kept coming up as one of the top specialists in the world for olfactory neuroblastoma,¡± recalls Justin. ¡°They said MD Anderson doctors work closely together to treat you, and Dr. Hanna is the go-to guy if you want the best outcome. So, I called MD Anderson to make an appointment.¡±
He flew to Houston to start treatment a few weeks later.
Olfactory neuroblastoma treatment at MD Anderson
Justin was 32 at the time of his diagnosis. His wife, who was pregnant with the couple¡¯s third child, stayed in Florida while Justin met with his MD Anderson care team, which included Hanna and neurosurgeon
¡°Dr. Hanna and Dr. Raza told me they were confident they could do the surgery to remove my tumor and explained everything to me,¡± Justin recalls. ¡°Hearing a ¡®yes¡¯ from the beginning from the doctors at MD Anderson was really nice, and that made me feel better.¡±
On Oct. 30, 2023, Justin had a 10-hour surgery to remove the tumor. In December, he began six weeks of radiation therapy under radiation oncologist
The radiation caused fatigue, hair loss, throat and mouth pain and difficulty eating and sleeping. ?
¡°I was tired all the time, but I was also being lazy,¡± says Justin. ¡°My family was in the process of moving from Florida back to Missouri, so I was in Houston by myself. I¡¯d fly home every two weeks for a weekend and on holidays. Most days, I was in Houston alone.¡±
Finding the will to compete
Justin was training for a powerlifting competition before his cancer diagnosis. So, he got a membership at a local gym during radiation treatment to see if he could ease back into working out. But due to fatigue, he was only able to go to the gym a couple of times.
¡°Honestly, it was kind of demoralizing at first because I had been really strong and fit before, and now I could barely do anything in the gym,¡± Justin recalls.
But he persisted and by the end of February, he was going to the gym 2 or 3 days a week for 30 to 40 minutes.
¡°I knew that the only thing that would help me feel better was to get up and move,¡± he says.
By May 2024, all of the radiation side effects were gone except for a small part of his beard that didn¡¯t grow back.
¡°I was feeling healthy, and my wife had just given birth to our child,¡± he says. ¡°I signed up for a powerlifting competition at the end of the year and gave myself a goal of getting to as strong as I was before cancer ¨C maybe even stronger.¡±
Fueled by motivation, Justin powered through the competition.
¡°I surpassed all the goals I had for that year,¡± he says. ¡°I think that baseline of being active, healthy and strong before cancer really helped me.¡±
A new perspective after olfactory neuroblastoma treatment
Justin comes to MD Anderson for follow-up scans every four months. If all continues to go well, he¡¯ll move to every six months next year.
¡°Cancer definitely put things into perspective for me,¡± he says. ¡°It doesn¡¯t matter how healthy you are or what you do to prevent cancer. Sometimes, you can just be diagnosed with a rare cancer.¡±
?Justin offers two tips for other young adults facing a cancer diagnosis.
¡°First, do your research. It¡¯s hard to know what to ask your doctors or what to expect if you don¡¯t research the cancer yourself,¡± he says. ¡°Second, find a community of people who have the same diagnosis, so you can ask them questions.¡±
Justin enjoys connecting with people through MD Anderson¡¯s .
¡°I share my story in hopes of inspiring others,¡± he says. ¡°And I¡¯ve met people who live close to my family, have young kids and are finishing up cancer treatment. We¡¯re all friends now and plan to meet up this summer.¡±?
Justin encountered people of all ages in different stages of treatment at MD Anderson. He now encourages people to take control of their health and keep up with their cancer screenings, especially for prostate cancer and breast cancer.
¡°Olfactory neuroblastoma is kind of a sneaky cancer; if it recurs, it¡¯s typically not until years later,¡± says Justin. ¡°It¡¯s something I¡¯ll monitor for the rest of my life. But I know there are great treatment options, and I have the best doctors if it does ever pop up again.¡±
or call 1-877-632-6789.
Why choose MD Anderson for neuroblastoma treatment?
From diagnosis through survivorship, each neuroblastoma patient at MD Anderson's Children's Cancer Hospital is cared for by a highly specialized team of experts. This team follows your child closely, communicating frequently with your family and each other to provide the best possible care.
We are among the world's leading authorities in neuroblastoma, and we draw upon the most advanced therapies, technology and techniques to diagnose and treat your child.
Comprehensive care
Surgery is often a part of neuroblastoma treatment, and our surgeons have a high level of expertise and skill, which helps increase the chances of successful treatment. In addition, we offer the very latest in chemotherapy options.
Children's Cancer Hospital offers clinical trials for innovative new treatments for neuroblastoma. And, behind the scenes we are working on groundbreaking basic science research to change the future of pediatric cancer.
Treating the whole child
Children's Cancer Hospital is designed just for children, with a full range of services and amenities that help make the child and family's experience as comfortable as possible. We go beyond medical care to deliver a comprehensive experience that treats the whole child.
And at Children's Cancer Hospital, your child benefits from the expertise and resources of one of the nation's top cancer centers.
We would have tried anything to make him well, but we couldn¡¯t have asked for better care.
Undergoing proton therapy for olfactory neuroblastoma during the COVID-19 pandemic
After a series of nosebleeds in 2005, I was diagnosed with a rare form of cancer called olfactory neuroblastoma. I had surgery to remove the?skull base tumor in my sinus cavity, followed by radiation therapy. I was then cancer-free for almost 15 years.
But in September 2019, I discovered a lump on the side of my neck. The cancer had returned and spread to my lymph nodes.
An MRI confirmed that the tumor had returned in my sinus cavity. In November 2019, I underwent two rounds of chemotherapy, followed by two surgeries in January and February 2020. The first surgery was to remove the cancer in my lymph nodes. The second surgery was to go back in my sinus cavities and remove the skull base tumor that had returned. Since I had received radiation therapy previously, my doctors recommended that I receive proton therapy this time. At my doctor¡¯s recommendation, I came to the MD Anderson Proton Therapy Center.
My olfactory neuroblastoma treatment at the Proton Therapy Center
My proton therapy treatment was scheduled in March 2020, right after the COVID-19 pandemic started. Since we live in South Carolina, my family and I made the 15-hour drive to MD Anderson in Houston. The schools were closed during this time and my wife could work from home, so we brought our 6- and 9-year-old children with us.
Radiation oncologist helped me through proton therapy with ease. I received treatment five days a week. I had a small amount of hair loss on the back of my head and a rash on the side of my neck and face where the radiation was most concentrated. My care team recommended that I stay out of the sun to let my skin heal.
The Proton Therapy Center nutritionist, Haley Deas, gave me guidance on what to eat if I had trouble swallowing because of the radiation. However, I did not have those side effects.
The staff at the Proton Therapy Center were extremely professional and thorough. They went out of their way to make sure my treatment went smoothly.
Life after olfactory neuroblastoma treatment
We returned home to South Carolina in early May. Fortunately, my job as a compliance officer at a bank has allowed me to work from home since my olfactory neuroblastoma diagnosis in October 2019.
So far, all my scans have come back negative for new tumors. ?My follow-up appointment with Dr. Gunn in August will be a virtual visit, so we will not have to make the trip back to Houston as the COVID-19 pandemic continues.
?I now appreciate each day a little more and try not to let unimportant things bother me or worry much. Life is short enough as it is. When I was undergoing chemotherapy, surgeries and proton therapy, there were times when I got discouraged, but I reminded myself to keep moving forward. After all, that is the only direction to go.
or by calling 1-877-632-6789.
MD Anderson's Children's Cancer Hospital
