Childhood Soft Tissue Sarcoma Treatment
Our soft tissue sarcoma treatments
If your child receives a soft tissue sarcoma diagnosis, the doctor will talk to you about the best ways to treat it. This depends on several things, including:
- The location and type of sarcoma
- If the cancer has spread
- Your child's age and health
Your child's treatment for soft tissue sarcoma will be customized and carefully planned. It may include one or more of the following.
Surgery
The main treatment for soft tissue sarcoma is surgery. If the entire tumor can be removed, successful treatment is more likely.
Like all surgeries, sarcoma surgery is most successful when performed by a specialist with a great deal of experience in the particular procedure. Children's Cancer Hospital surgeons are some of the most skilled and recognized in the world. They are among the few surgeons in the world who specialize in soft tissue sarcoma treatment, and they use the least-invasive and most advanced techniques.
During the operation, the surgeon removes as much of the tumor as possible, as well as some tissue around it to take out as many cancer cells as possible. Lymph nodes may be removed too.
Your child may receive chemotherapy or radiation therapy before or after the surgery.
Because of a special type of surgery called limb-sparing surgery, which often is followed with radiation therapy, most patients do not have to have arms or legs removed to treat sarcoma.
Chemotherapy
Chemotherapy may be given before surgery to shrink the tumor and make it easier to remove during surgery. In certain types of soft tissue sarcoma, or if the cancer has spread, chemotherapy may be given after surgery.
Radiation therapy
Advanced radiation therapy techniques and renowned skill allow Children's Cancer Hospital doctors to target tumors more precisely, delivering the maximum amount of radiation with the least impact on healthy cells.
Although radiation therapy usually is not the main treatment for soft tissue sarcoma, it may be used before surgery to shrink the tumor or after surgery to eliminate remaining cancer cells. It also may be used if the tumor cannot be removed by surgery. Children's Cancer Hospital provides the most advanced radiation treatments, including:
- 3D-conformal radiation therapy: Several radiation beams are given in the exact shape of the tumor
- Intensity-modulated radiotherapy (IMRT): Treatment is tailored to the specific shape of the tumor
Proton therapy
The Proton Therapy Center at MD Anderson is one of the largest and most advanced centers in the world. It's the only proton therapy facility in the country located within a comprehensive cancer center. This means that this cutting-edge therapy is backed by all the expertise and compassionate care for which MD Anderson is famous.
Proton therapy delivers high radiation doses directly to the tumor site, sparing nearby healthy tissue and vital organs. For some patients, this therapy results in better cancer control with less impact on the body.
Watchful waiting
Sometimes the best approach is to monitor your child closely for a period of time before beginning treatment.
Targeted therapies
Children's Cancer Hospital is leading into the future of soft tissue sarcoma treatment by developing innovative targeted therapies. These agents are specially designed to treat each cancer's specific genetic/molecular profile to help your body fight the disease.
Many of the doctors at Children's Cancer Hospital are dedicated researchers who have pioneered and actively lead national and international clinical trials with novel targeted agents.
Our treatment approach
At MD Anderson's Children's Cancer Hospital, one of the world's foremost team of experts customizes a treatment plan for your child. This multidisciplinary group is among the few in the nation with specialized experience in treating these rare types of cancers.
Children's Cancer Hospital is committed to providing the most advanced treatments for soft tissue sarcoma with the least impact on your child's body, today and in the future.
Specialized expertise
The team that treats your child for soft tissue sarcoma includes a number of highly trained doctors, including oncologists, surgical oncologists and radiation oncologists. They are supported by a group of dedicated professionals such as advanced practice nurses, physician assistants, therapists and social workers.
Surgery often is the main treatment for soft tissue sarcoma. Procedures often are delicate and complex. Our surgeons are among the most skilled in the world in surgery for soft tissue sarcoma. They use the latest techniques and technology to give your child the best possible chances for successful treatment.
Children's Cancer Hospital offers a range of clinical trials for soft tissue sarcomas. We are on the forefront of discovering new and better ways to treat soft tissue sarcoma, and this can translate to better chances for successful treatment for your child.
Learn more about childhood soft tissue sarcoma:
MD Anderson helped my son through a pediatric rhabdomyosarcoma diagnosis
When my son, Sawyer, was just two years old, we started to notice that he had swelling on the left side of his face. I saw what looked like an abscessed tooth and thought it was just his 2-year molars coming in. After trips to the pediatric dentist and oral surgeon led to a biopsy, we learned he had embryonal rhabdomyosarcoma. This meant that there was a tumor on Sawyer¡¯s left jawbone.
Sawyer¡¯s pediatrician recommended we go directly to MD Anderson. Because the tumor was inoperable and quickly growing, Sawyer¡¯s care team recommended proton therapy and chemotherapy. Proton therapy was able to target the tumor in Sawyer¡¯s jaw and spare sensitive tissue such as his eyes and ears.
Starting treatment for rhabdomyosarcoma
In November 2016, Sawyer¡¯s care team began a 43-week chemotherapy treatment plan at MD Anderson Children¡¯s Cancer Hospital. Mid-way through chemotherapy, Sawyer began 28 proton therapy treatments that occurred simultaneously. His radiation oncologist, , and the staff at the Proton Therapy Center were remarkable. Before the COVID-19 pandemic, we would stop in to say hi to his nurses, Leo Flores and Yvette Rosenthal during follow-up visits. Child life specialist Laura Oncale helped Sawyer keep his mind off treatment. Leo worked on a painting of Sawyer¡¯s favorite Disney Cars character each day of his treatment. This made the experience a positive one that he will remember.
Sawyer also received four blood transfusions to help elevate his red blood cell count. This made the proton treatments more effective.?He responded well, and his energy came soaring back after each transfusion.
Helping Sawyer through side effects of chemotherapy and proton therapy
The hardest part about proton therapy for Sawyer were the side effects. The radiation caused mouth sores and some skin irritations on his face. We struggled finding foods he would tolerate.?We were able to keep his calories up by feeding him his favorite snacks and frozen treats.?
Sawyer stayed relatively healthy during the entire process. So, we were able to minimize the overnight stays and inpatient infusions.?We were happy to isolate him at home during this time because it kept him healthy.?He never missed an infusion due to illness or side effects.??
He did experience some peripheral neuropathy, causing a foot drop, which can occur from nerve damage during chemotherapy. Physical therapy helped with that.?Physical therapist Rachel Jarrouge worked with Sawyer once a week to improve his balance and muscle coordination.?Sawyer loved going to physical therapy because he got to run around and play games with Ms. Rachel.?He has not had any long-term physical side effects to his mobility, and the nerves in his foot regrew quickly once he finished chemotherapy.
During chemotherapy, Sawyer experienced some vomiting, nausea and constipation.?We handled these with prescription medication and at-home remedies.?Sawyer¡¯s care team, led by Dr. Douglas Harrison, prescribed a portable bag of fluids for him to wear home for 24 hours at a time to help with dehydration.?The bag of fluids and pump were too big for him to carry, so we propped it up by his bed at night. The nurses taught me how to safely remove the needle and IV tubing from his port at home the following day.?This at-home hydration solution worked well for us and helped Sawyer with his digestion. This kept us out of the hospital and enabled Sawyer to enjoy being at home with his family and pets.
Thriving after rhabdomyosarcoma treatment
On Sept. 29, 2020, we got the good news that Sawyer is still cancer-free. We are thankful that he was diagnosed quickly, treated aggressively and strategically, and that we live in driving distance to a world-renowned cancer hospital.
Sawyer is now in first grade and growing tall. We are grateful for the treatment he received at MD Anderson, which was vital in protecting his mental and physical abilities. We will always remind him that he beat cancer when he was just three years old.
We have the privilege to stay involved in the childhood cancer community through volunteer work. I recommend families take any help they can from their community. Do not turn down the free help. We are grateful to be able to give back. Because we know that we are one of the lucky ones and will never take that for granted.
or by calling 1-877-632-6789.
Childhood soft tissue sarcomas are treated in our Children's Cancer Hospital and our Proton Therapy Center.
Pediatric rhabdomyosarcoma caregiver supports son through treatment
The summer after six-year-old Christian completed kindergarten, he started complaining that his ear hurt. His mom, Marisa Garcia, thought it was an ear infection from being in the water during a recent beach trip. At first, she didn¡¯t see anything, but then she noticed a lump behind his left ear.
When his face began to swell and the bump grew larger, his parents took him to the emergency room. On June 14, 2021, doctors found a fast-growing tumor.
Trip to ER reveals rhabdomyosarcoma
After several more scans, doctors determined the cancer had spread throughout his body. Christian was diagnosed with stage IV rhabdomyosarcoma.
¡°I never would have imagined we would find out that Christian had cancer,¡± says Marisa.
The family brought Christian to MD Anderson to be treated by rhabdomyosarcoma expert .
On June 21, two days after Christian¡¯s first appointment, he started chemotherapy.
¡°It was heavy and emotional. While trying to absorb all the information given to us, we were trying our best to comfort and console our child," says Marisa. ¡°But from the beginning, everyone has treated us with care and patience.¡±
Perseverance during rhabdomyosarcoma treatment
Mid-way through his 52 weeks of chemotherapy at MD Anderson Children¡¯s Cancer Hospital, ?Christian began 33 proton therapy treatments under the care of .
Because of the physical properties of proton beams, ?proton therapy is ideal for pediatric cancer patients with tumors located near growing tissues, especially in the brain, spine, eyes, ears or mouth.
Christian¡¯s parents remember the first month of treatment being the hardest for their family. They had to learn to navigate hospital life while taking care of their other children. Once they developed a routine, Christian started to understand what he needed to do. That¡¯s when Marisa remembers things beginning to lighten up.
During treatment, Christian maintained good energy, an appetite and remained in high spirits.?To help manage side effects, his parents kept him comfortable with his prescribed medications. ¡°During chemotherapy, Christian experienced moments of nausea, but it was not a daily thing,¡± says Marisa.?¡°He enjoys staying active and still runs and plays often.¡±
With the proton beam¡¯s target area being near his throat and behind his ear, Christian had side effects such as patchy hair loss, skin irritation and change in taste. But these symptoms were managed by his care team, and they improved over a short recovery time after treatment.
Follow-up scans show positive response
After eight weeks of chemotherapy, Christian had his first follow-up scans in September.
They showed that the cancer that had spread to his arms, legs, pelvis, bone marrow and spine was gone, along with the baseball-sized tumor. ¡°It was better than anything we could have hoped for,¡± says Harrison.
Still, Christian continued proton therapy and chemotherapy to eliminate any microscopic cancerous cell that might be left.
Undergoing proton therapy treatment without sedation
Anesthesia is usually given to young children to help them remain still during radiation therapy. But four days into treatment, Christian was ready to try undergoing his proton treatment without anesthesia.
With the help of the child life team?at the Proton Therapy Center, Christian underwent the last six weeks of treatments without sedation. ?¡°I would meditate with him and make him feel very calm before treatment,¡± Marisa says. ¡°That really helped him a lot.¡±
On Nov. 15, 2021, with his radiation therapists and nurses cheering him on, Christian rang the gong to mark the end of his proton therapy treatments. ¡°His skin looks great, no weight loss, few mouth sores, and he walked out of his last treatment like a little boss,¡± says Marisa.
Standing strong through childhood cancer treatment
Marisa encourages other parents of pediatric cancer patients to keep their spirits up.
¡°Remain grateful and recognize blessings where you can. Everything we've worried about, everything we've braced ourselves for, God covers it,¡± says Marisa. ¡°What helped us was talking through the process with Christian. When you don¡¯t keep a child in the dark about their treatment, they know what to expect and can mentally prepare. This made things seem a lot less scary for him. ¡°
or by calling 1-877-632-6789.
Childhood rhabdomyosarcoma: 6 facts
Rhabdomyosarcoma is the most common soft tissue sarcoma in children and adolescents. This type of sarcoma grows in the muscles attached to the skeleton.
We spoke with medical oncologist ., who treats pediatric cancer patients at MD Anderson Children¡¯s Cancer Hospital, to learn more.?
What are common rhabdomyosarcoma symptoms?
Rhabdomyosarcoma symptoms vary depending on the cancer¡¯s location. The most common symptom is a mass. Depending on where the mass appears on the body, symptoms may include:?
- Neck, chest, back, arm or leg: most commonly a lump on the skin or swelling that can be painful
- Eye area: bulging around the affected eye, which can lead to crossed eyes or blurry vision in advanced cases
- Ear or nasal sinus: earache, headache, nosebleeds or sinus congestion
- Bladder or prostate: painful urination, blood in the urine or vaginal bleeding
- Abdomen or pelvis: vomiting, belly pain or constipation
How is rhabdomyosarcoma diagnosed?
Rhabdomyosarcoma is normally confirmed through a needle or surgical biopsy which usually follows?diagnostic imaging, such as MRI, CT scan or PET scan. A biopsy helps define the tumor¡¯s subtype and in some cases can identify specific molecular changes in the tumor called a translocation. This enables the care team to make an accurate diagnosis.
The course of treatment typically depends on the specific subtype of rhabdomyosarcoma and whether the cancer has spread.?
What causes rhabdomyosarcoma?
In most cases, the cause of rhabdomyosarcoma is unknown. There are a few rare genetic conditions that children can inherit from their parents, which put them at increased risk for rhabdomyosarcoma. These include:?
- Neurofibromatosis type 1 (NF1)
- Li-Fraumeni syndrome?
- Dicer1 syndrome
- Costello syndrome?
- Beckwith-Wiedemann syndrome
- Noonan syndrome?
How is rhabdomyosarcoma typically treated??
?
Treatment is usually determined based on the tumor size, location and whether it has spread. In children and adults, treatment for rhabdomyosarcoma usually involves surgery, along with chemotherapy in combination with radiation therapy. The number of treatments and type of chemotherapy used depend on whether the child has low-risk, intermediate-risk or high-risk rhabdomyosarcoma. The risk level is based on where the cancer starts, tumor size and metastatic spread.?
Radiation therapy shrinks a tumor by destroying any cancer cells that might remain after surgery and chemotherapy. Intensity modulated radiation therapy (IMRT), proton therapy, stereotactic body radiation therapy (SBRT) and internal radiation are most commonly used.??
Because of the physical properties of proton beams, proton therapy is ideal for pediatric cancer patients with tumors located near growing tissues, especially in the brain, spine, eyes, ears or mouth. This limits the possible damage to children whose bodies are still developing.
What should parents of a child with rhabdomyosarcoma know about choosing MD Anderson for treatment? ?
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Each sarcoma patient receives a comprehensive treatment plan tied into novel approaches for both adult and pediatric patients through our MD Anderson Children¡¯s Cancer Hospital, Sarcoma and Orthopaedic Center and Proton Therapy Center.
What makes MD Anderson unique in sarcoma treatment is that our patients have access to more cutting-edge and early-phase clinical trials. Our experts are part of a joint adult/pediatric tumor board where they discuss treatments for each patient as a team with a comprehensive medical approach.?
Our patients have access to strong patient support programs and our fully accredited school designed to keep children on grade level. ¡°We are able to deploy the best of adult cancer care with the best of pediatric cancer care in one space,¡± explains Harrison. ¡°We stay in close contact with our patients and their families to ensure they get everything they need.¡±??
What are the latest advances in the diagnosis and treatment of rhabdomyosarcoma?
Clinical trials play an important role in making treatments even more effective. There are several worldwide clinical trials looking at patients with higher-risk rhabdomyosarcoma. There are also clinical trials looking at immunotherapy and targeted therapy for treating rhabdomyosarcoma patients.?
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Harrison wants caregivers to know that current treatments offer a lot of hope for pediatric cancer patients and their families. ¡°It takes a village, and our surgeons, radiation oncologists and pediatric oncology team work together to make sure our patients receive the best care,¡± he says.?
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? or by calling 1-877-632-6789.