Neuroblastoma Treatment
Treatment for neuroblastoma often is complex. MD Anderson¡¯s Children¡¯s Cancer Hospital offers a team approach to neuroblastoma, bringing together some of the nation¡¯s top experts to personalize your child¡¯s course of treatment.
Your child¡¯s care team will feature several physicians, including oncologists, surgeons, radiologists, radiation oncologists, as well as a highly specialized support staff. Their aim is to deliver therapies with the highest chance for success and the least impact on the growing body.
Surgical skill is key
Like all surgeries, neuroblastoma surgery is most successful when performed by a specialist with a great deal of experience in the particular procedure.
The surgeons at Children¡¯s Cancer Hospital are highly specialized in neuroblastoma, and they are among the most skilled and renowned in the world. They perform a high number of surgeries for neuroblastoma each year, using the least-invasive and most advanced techniques.
Leading-edge research
We offer a range of clinical trials of innovative therapies for neuroblastoma, including high-risk, progressive and recurrent forms of the disease.
Our neuroblastoma treatments
Your child¡¯s neuroblastoma treatment will be customized to provide the most effective treatment with the least effect on the body. Your doctor will discuss treatment options with you. These are based on:
- Your child¡¯s age and health
- The size, location and features of the tumor
- Whether the cancer has spread
Some low-risk neuroblastoma tumors will go away without any treatment, and others may be cured by surgery alone. However, many times the cancer has spread to other parts of the body and will require intensive combinations of treatment.
Surgery
Neuroblastoma treatment often includes surgery to remove as much of the tumor as possible. Surrounding lymph nodes also may be removed to find out if the cancer has spread.
Sometimes, the entire tumor can be removed. However, if the tumor is close to important parts of the body or large blood vessels, only partial removal may be possible. In these cases, chemotherapy and radiation therapy are given after surgery.
Chemotherapy is sometimes given before surgery to make the tumor smaller and easier to remove.
Chemotherapy
Neuroblastoma often spreads to other parts of the body, such as the lymph nodes, bone marrow, liver, bones or lungs, before it is diagnosed. Chemotherapy travels all through the body, and that makes it effective in treating neuroblastoma.
Children¡¯s Cancer Hospital offers the most up-to-date and advanced chemotherapy options for neuroblastoma. Chemotherapy may be given:
- Before surgery (neoadjuvant chemotherapy)
- After surgery (adjuvant chemotherapy)
- As the main treatment if the cancer cannot be removed by surgery
Radiation therapy
Radiation therapy (also called radiotherapy) uses high-energy beams to destroy cancer cells. New radiation therapy techniques, including proton therapy, and remarkable skill allow Children¡¯s Cancer Hospital doctors to target neuroblastoma tumors more precisely, delivering the maximum amount of radiation with the least damage to healthy cells.
Some children with neuroblastoma receive radiation therapy:
- After surgery to stop or slow the growth of tumors that cannot be treated successfully with surgery and chemotherapy
- After a stem-cell transplant
- To help with symptoms such as pain and breathing difficulties
MIBG radiotherapy
Children with advanced neuroblastoma may sometimes benefit from MIBG radiotherapy. A radioactive chemical is injected into the blood and travels directly to neuroblastoma tumor cells in the body.
High-dose chemotherapy/radiation therapy and stem cell transplant
Children with treatment-resistant, advanced neuroblastoma may benefit from a stem cell transplant.
Retinoid therapy
Treatment with vitamin A or a vitamin A-like compound may be used in some patients.
Targeted therapies
Children¡¯s Cancer Hospital is leading into the future of neuroblastoma treatment by developing innovative targeted therapies. These agents are specially designed to treat each cancer¡¯s specific genetic/molecular profile to help your child¡¯s body fight the disease. Many of the doctors who treat neuroblastoma at Children¡¯s Cancer Hospital are dedicated researchers who have pioneered and actively lead national and international clinical trials with novel targeted agents.
Learn more about neuroblastoma:
Learn more about clinical trials for neuroblastoma.
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.
Pediatric cancer parents: Why we traveled from Denmark for proton therapy at MD Anderson
When our son Lue was about 18 months old, we noticed he was sweating a lot. He was a happy toddler with no other visible symptoms. But when we had him checked by a doctor in Denmark, a lab test showed his blood counts were off. An ultrasound revealed neuroblastoma in his stomach and spine.
Traveling to Houston for proton therapy
In 2015, Lue started chemotherapy followed by surgery in Denmark. At the time, there were no proton treatment facilities available for children in Denmark, and proton therapy is the optimal radiation therapy treatment for pediatric patients. Because protons can be precisely controlled, pediatric proton therapy is ideal for tumors located near growing healthy tissues in the spinal cord, brain, eyes, ears or mouth.
So when the doctors in Denmark offered us the opportunity for Lue to receive treatment at MD Anderson, we made the trip to Houston. While Lue received proton therapy, he continued his chemotherapy.
We were fortunate to stay in Houston with other Danish families who?also had children undergoing cancer treatment. It was encouraging to share our journey with them, and we remain in touch with some of the families.
Lue received a lot of love and care from Leo Flores and Yvette Rosenthal, the pediatric nurses at MD Anderson Proton Therapy Center. They took care of Lue as he underwent anesthesia for proton therapy. Their support and encouragement helped us get through each day.
Family bonding through a childhood cancer diagnosis
When we traveled to Houston, we brought along Lue¡¯s two older brothers. It was tough for us to be away from home at such a crucial time. But it strengthened us as a family. Having his brothers there helped Lue get through each day of treatment. We found comfort in spending time together every day and facing Lue¡¯s diagnosis as a family.
There was a guestbook in the lobby that we read often. A former patient wrote a reminder to not walk like a sheep but to walk and fight like a tiger. We took this to heart and reminded ourselves that we wanted to hold on to hope and fight like the tiger. A former patient at the Proton Therapy Center gave us bracelets with the slogan: ¡°Never ever give up.¡± We wore those bracelets as a daily reminder for years after Lue¡¯s treatment.
After Lue finished proton therapy, we returned home to Denmark. He had follow-up visits from his doctors in Denmark every three months, then yearly until he was in remission.
Return to MD Anderson provides perspective
Because Lue was so young when he underwent treatment in Houston, we wanted to give him memories he could remember. So in February 2023, we returned to Houston to let him tour MD Anderson. It was amazing to see the gong at the Proton Therapy Center that Lue hit after he completed treatment. We also got to reconnect with some of his care team. It was an emotional experience for all of us. It was important to us for Lue and his brothers to make new memories of visiting the zoo and parks in Houston as we had done so many times in 2015.
On one of the walking trails in Hermann Park, we saw a quote that put our experience into perspective. It said: ¡°If you think in terms of a year, plant a seed. If you think in terms of 10 years, plant trees. If you think in terms of 100 years, teach the people.¡± It reminded us that when we were in Houston in 2015, we did not know what the future would have in store for us in just one year. All we could do was address the here and now and ¡°plant a seed.¡±
Returning years later with our son in complete remission, we could see how our time had changed.
Today Lue is a healthy 9-year-old boy. He goes to school and loves playing soccer, reading, and spending time with his brothers. He has no side effects from the neuroblastoma or its treatment. He is in complete remission and sees his doctors in Denmark every year.
We are thankful for our time at MD Anderson and know it has shaped our son's path to never giving up.
?or by calling 1-877-632-6789.
Olfactory neuroblastoma survivor champions self-advocacy and integrative medicine
When Regina Gibbs began having nasal congestion and a sore throat in late 2020, she assumed she¡¯d caught COVID-19. The symptoms were similar, and she had been traveling.
But to Regina¡¯s surprise, her physician referred her to a specialist who diagnosed her with nasal polyps. For almost a year, Regina took medication and used nasal sprays, but her condition didn¡¯t improve.
¡°When treatment was unsuccessful, the specialist mentioned surgery,¡± says Regina. ¡°I¡¯d never had surgery in my life, so I declined and asked for a second opinion.¡±
When her first MRI didn¡¯t reveal much new information, Regina had a repeat MRI.
¡°I don¡¯t know if the second MRI was at a different angle or was a different type, but it was obvious that I had a tumor,¡± says Regina. ¡°My doctor ordered a biopsy to determine if it was cancerous.¡±
Once the biopsy results came back, Regina was diagnosed with olfactory neuroblastoma, a rare type of nasal and sinus cancer that frequently involves the base of the skull.
Choosing MD Anderson for olfactory neuroblastoma treatment
Regina was referred to two local hospitals near her hometown of Oakland, California. But she wanted to do her own research first.
¡°I¡¯d never heard of olfactory neuroblastoma, so I researched online to learn as much as I could about it,¡± she says. ¡°I learned it was rare, which was a little scary.¡±
For weeks, Regina scoured forums on the internet, tapped into her network of friends and set up appointments to visit doctors and get more information about her diagnosis.
Regina also found guidance on social media. She was searching for testimonials from olfactory neuroblastoma patients and found some groups to join. From there, she asked group members about recommendations for doctors and treatment centers.
One doctor¡¯s name kept coming up: MD Anderson head and neck tumor surgeon
Regina read several of Dr. Hanna¡¯s published journal articles and was confident he had the expertise to treat the rare form of cancer.
¡°I needed a high-volume treatment center with doctors who had experience in treating this condition,¡± Regina says. ¡°I felt like I needed to try MD Anderson, and I had close family in Houston, so I knew I¡¯d have a support system. It seemed like a good fit.¡±
Surgery to treat olfactory neuroblastoma
When Regina had her first appointment at MD Anderson, she was greeted by Head and Neck Center clinical nurse Marie Pope.
¡°Marie was very sweet, welcoming and comforting,¡± says Regina. ¡°She just had a caring presence.¡±
Regina also met with other members of her care team, including radiation oncologist , and neurosurgeon
The first thing Dr. Hanna did was order an updated MRI, bloodwork and pathology review of Regina¡¯s original tumor tissue to confirm her diagnosis and eliminate the possibility of other types of paranasal cancers before recommending treatment. Regina appreciated this approach and was glad her care team took steps to ensure she received the proper treatment.
In March 2021, Regina underwent surgical removal of the tumor through an endoscopic nasal procedure combined with a craniotomy. Through the endoscopic nasal approach, Dr. Hanna removed the lower portion of the tumor while Dr. DeMonte removed the portion of the tumor beneath her brain. After that, Regina had six weeks of highly conformal radiation to reduce the radiation dose to nearby organs, such as the brain and eyes.?
¡°I followed every instruction and then some to make sure I had a successful experience,¡± Regina says. ¡°I was doing everything I could to prepare my body for the treatment, including drinking a lot of water and taking walks post-surgery.¡±
Faith, family and friends she could count on
Regina kept a close circle of friends she refers to as her core support group, which included family, coworkers and church members. They shared prayers, sent Regina ¡°healing¡± hats when she lost her hair and gave her a notepad full of daily inspiring messages to count down her days of radiation treatment as well as words of encouragement for her difficult days.
¡°These were close friends and family who I felt understood me as a person, who were close in my faith in God and whom I could be vulnerable with,¡± says Regina. ¡°I knew I could depend on them to check on me every day. These are the people who say, ¡®I'm not too busy to call you and fill your head with positivity and hope.¡¯¡±
Managing nutrition during treatment
Although she suffered some hair loss and temporarily lost her sense of taste during radiation treatments, Regina says her side effects were minimal. She credits her dietitians at MD Anderson for finding foods she could eat and still receive the proper nutrients.?
¡°I want to continue to be cancer-free, and I know that diet is one of the weapons I can use to make sure that I stay cancer-free,¡± says Regina.
Seeking out new activities
In between surgery and radiation treatments, Regina sought out local activities to keep her busy and shift her focus from the treatments. One of those activities included taking DJ classes at a music center in Houston. The class instructor¡¯s father happened to be a urologist at MD Anderson.
¡°That class was great,¡± says Regina. ¡°There were days I came to class and didn¡¯t have much energy, but the instructor didn¡¯t stop. He encouraged me to keep going.¡±?
Finding success with Integrative Medicine
Regina¡¯s activity-seeking also led her to the Integrative Medicine Center at MD Anderson. She participated in cooking classes, yoga and music therapy.
¡°The integrative medicine and nutrition teams were critical throughout my treatment and survivorship journey,¡± says Regina. ¡°The cooking course taught me a lot about cooking products and nutritional choices when shopping and preparing food; the yoga classes helped with my mood and mindset, and I forged a lot of meaningful friendships through the music therapy classes, which I still attend virtually whenever I can.¡±??
Regina describes her experience as a cleanse of her former self.
¡°It felt like I was starting life all over,¡± she says. ¡°I was looking forward to total healing and total recovery. I was looking beyond the hurdles I was facing and beyond the fears I had about the whole thing.¡±
These days, Regina is back living in California and flies to Houston to visit MD Anderson every four months for checkups. Because she¡¯s doing so well, she¡¯ll soon only need to visit every six months.
Regina credits her care team for her recovery and has this advice to share with other patients: ¡°Be your own advocate. Ask for what you need. Being the designer of your treatment plan is so important.¡±
or by calling 1-877-632-6789.