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This includes fat, cartilage, connective tissue, muscles, skin, nerves, tendons, joints, blood vessels and lymph vessels.
The most common locations of soft tissue sarcomas are the arms and legs. But they also can grow in the head and neck area, chest, abdomen and pelvis. Soft tissue sarcoma can occur in children and adults. This information is about soft tissue sarcoma in children.
Rhabdomyosarcoma is the most common childhood soft tissue sarcoma. It grows in the muscles attached to the skeleton. According to the American Cancer Society, about 340 children in the nation are diagnosed with rhabdomyosarcoma each year. It makes up 3% of childhood cancers and 2% of adolescent cancers.
Other soft tissue sarcomas
Other childhood soft tissue tumors are sometimes called non-rhabdomyosarcoma soft tissue sarcomas (NRSTS). All together, this group of cancers makes up about 4% of pediatric cancers. Many types of exist. They are classified by what part of the body they started in. The cells in each type are different.
Other than rhabdomyosarcoma, the most common soft tissue sarcomas in children are:
Fat tissue tumors: Liposarcoma in children is usually low grade and grows slowly. The most common type is called myxoid liposarcoma.
Bone and cartilage tumors: Extraskeletal chondrosarcoma develops in the cartilage of the bone and is more common in adults.
Connective tissue tumors, including:
- Desmoid tumors or aggressive fibromatosis, which usually grows slowly and is unlikely to spread to other parts of the body. Children with the genetic condition familial adenomatous polyposis (FAP) are at higher risk.
- Fibrosarcoma, which is usually found in children under 4, especially infants. Sometimes it is found in an ultrasound during pregnancy. Tumors tend to be large and grow quickly, but they usually do not spread.
Muscle tumors: Leiomyosarcoma is associated with the Epstein-Barr virus in children with HIV/AIDS. Survivors of retinoblastoma are also at higher risk.
Skin tumors (also called fibrohistiocytic tumors): Plexiform fibrohistiocytic tumors begin as a painless mass on or under the skin of the arm, hand or wrist. Undifferentiated pleomorphic sarcoma tends to develop in the arms or legs of children who have had radiation therapy or retinoblastoma.
Nerve tumors: Malignant peripheral nerve sheath tumors grow in the covering of nerves outside the brain and spinal cord. Children with the genetic condition neurofibromatosis type 1 (NF1) are at higher risk.
Tumors of unknown origin: Synovial sarcoma tumors are found in the joints of the legs or arms, or in the head, neck or trunk. Children under 10 with small tumors have the best chance for successful treatment.
Blood vessel tumors, including:
- Angiosarcomas, which grow quickly in lymph or blood vessels.
- Epithelioid hemangioendotheliomas, which usually develop in infants in the liver. They typically are benign (not cancer).
Pediatric soft tissue sarcoma risk factors
Anything that increases your child’s likelihood of developing soft tissue sarcoma is a risk factor. These include:
- Inherited genetic conditions such as:
- Neurofibromatosis type 1 (NF1)
- Li-Fraumeni syndrome
- Inherited retinoblastoma
- Werner syndrome
- Familial adenomatous polyposis (FAP)
- HIV/AIDS and Epstein-Barr virus
- Age: Teenagers and infants under 1 year of age are at higher risk.
If your child has a risk factor for soft tissue sarcoma, it does not mean your child will develop the disease. However, if any of the above disorders run in your family, be sure to tell your child’s doctor. Genetic testing may be suggested.
Some soft tissue sarcomas can be passed down from one generation to the next. Genetic counseling may be right for you. Learn more about the risk to you and your family on our genetic testing page.
The signs of soft tissue sarcoma vary from child to child and disease to disease. The location of the soft tissue sarcoma can make a difference in the symptoms.
Usually, the first symptom of a soft tissue sarcoma is a painless mass or lump. It may be in an arm or leg or the trunk of the body.
As the sarcoma grows, it will press on adjacent parts of the body, such as nerves, muscles, blood vessels and organs. When this happens, other symptoms may appear, such as muscle weakness or pain.
Soft tissue sarcomas are rare. If your child has these symptoms, they probably are caused by a less serious condition. However, it is a good idea to talk to your doctor to rule out other health problems.
Soft tissue sarcomas are complex and can grow in many different areas of the body. This means they often are difficult to diagnose correctly. However, an accurate diagnosis is crucial to successful soft tissue sarcoma treatment. An incorrect diagnosis may actually be harmful.
If at all possible, the first biopsy should be at the cancer center where your child will be treated. Try to go to a cancer center that sees a large number of pediatric sarcoma patients and has a specialized pediatric sarcoma team that includes specialized pathologists.
At MD Anderson's Children's Cancer Hospital, we see more children with soft tissue sarcoma than most hospitals. Our specialized experts have a remarkable level of skill, which helps them pinpoint the location and extent of the sarcoma.
We have the latest methods and technology to be sure your child gets the most accurate diagnosis possible. This can make a difference in the success of treatment.
Soft tissue sarcoma diagnostic tests
If your child has symptoms that may indicate a soft tissue sarcoma, the doctor will examine your child closely. The doctor will ask questions about your child's health and medical history, and your family's medical history.
One or more of the following diagnostic tests may be used to find out if your child has a soft tissue sarcoma and if it has spread. These tests also may be used to find out if treatment is working.
The only way to be certain your child has a soft tissue sarcoma is a biopsy. This means to remove some cells from the tumor to look at with a microscope. Surrounding tissue and lymph nodes may be biopsied too. Imaging tests may be used before or after biopsy to determine the location and extent of the tumor.
The doctor will choose one of the following types of biopsy depending on where the tumor is:
- Fine needle aspiration (FNA): A tiny needle is guided into the mass and suction is applied. CT (computed tomography) scans may be used to help guide the needle. If the test shows that the tumor may be a soft tissue sarcoma, another type of biopsy will be done to remove a larger piece of tissue.
- Core needle: The doctor uses a needle slightly larger than the one used in an FNA biopsy to remove a cylindrical sample of tissue.
- Incisional: An incision (cut) is made in the skin and a small part of tumor is removed.
- Excisional: An incision is made in the skin and the entire growth is removed surgically.
Several imaging tests can be used to diagnose soft tissue sarcoma, which may include:
- CT or CAT (computed axial tomography) scans
- MRI (magnetic resonance imaging) scans
- PET (positron emission tomography) scans
- Chest X-ray
Getting a second opinion at children’s cancer hospital
The pediatric cancer experts at Children’s Cancer Hospital welcome the opportunity to provide second opinions for soft tissue sarcoma.
If you would like to get a second opinion at Children’s Cancer Hospital, call 877-257-1592 to make an appointment or request an appointment online.
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.
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.
Our soft tissue sarcoma treatments
If your child is diagnosed with soft tissue sarcoma, 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.
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 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.
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
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.
Sometimes the best approach is to monitor your child closely for a period of time before beginning treatment.
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.
Why choose MD Anderson for your childhood soft tissue sarcoma treatment?
At MD Anderson's Children's Cancer Hospital, we know your child's health and well being are your number one concern. Our renowned experts customize your child's care for soft tissue sarcoma, utilizing the most advanced treatments and techniques with the least impact on your child's growing body.
Because soft tissue sarcomas are rare, most physicians have little or no experience in diagnosing and treating them. As part of one of the world's most active cancer centers, Children's Cancer Hospital has remarkable experience and skill in these types of cancer. This can make a difference in your child's outcome.
A team of specially trained physicians follows your child throughout treatment, all the way to survivorship. They communicate closely with each other, and with you, to ensure comprehensive, personalized care. They are supported by full complement of health care professionals dedicated to your child's treatment, including nurses, physician assistants, therapists and others.
Children's Cancer Hospital offers clinical trials for innovative new treatments for soft tissue sarcoma. 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 resources and expertise of one of the nation's top cancer centers.
My life is full of purpose and possibility.
It all started with just a tiny lump on his wrist.
In the summer of 2014, Kobee Cohen, then 8 years old, noticed a tiny growth on the underside of his right wrist. His grandparents, Hadley and Melinda Cohen, weren’t too concerned.
“What young, active boy doesn’t have a bunch of bumps and bruises?” Hadley recalls.
But they started to get a little nervous in January 2015, when Kobee banged his arm on a basketball goal and the swelling didn’t go down.
The Cohens took their grandson to a bone and joint doctor in Beaumont, Texas. He said the lump should be removed and immediately referred Kobee to MD Anderson.
“Whenever you hear that you have to go get checked out for cancer, it isn’t a good thing,” Hadley says. “But hearing the name MD Anderson was actually a relief because we know that they are the best for cancer care.”
Kobee’s rhabdomyosarcoma diagnosis
Kobee was initially referred to Patrick Lin, M.D. During that initial appointment, Dr. Lin felt the lump on his wrist, asked questions, and ordered an X-ray and an MRI.
A biopsy the following week yielded Kobee’s diagnosis: rhabdomyosarcoma, a rare form of cancer that develops from soft tissues that form muscles.
When Kobee asked how he got cancer, Dr. Lin explained, “Your body is like a bunch of dominoes and one of them just happened to fall over in an unexpected way.”
Perseverance during rhabdomyosarcoma treatment
After the diagnosis, Dr. Lin consulted Winston W. Huh, M.D., at MD Anderson Children’s Cancer Hospital.
“We love Dr. Huh,” Hadley says. “He has kids, so he gets it. He really gets down on their level. Plus, he can talk iPads and video games and all the things kids like.”
After injecting Kobee’s tumor with radiated sugar to make sure the rhabdomyosarcoma hadn’t spread, harvesting a lymph node and acquiring a bone marrow sample, his care team came up with his treatment plan.
Kobee started with chemotherapy using vincristine, dactinomycin and cyclophosphamide. After shrinking the tumor, Kobee underwent a seven and a half hour surgery with Dr. Lin and Scott Oates, M.D., to remove the tumor.
After the surgery, Kobee received radiation therapy under the care of Susan McGovern, M.D., Ph.D. He also received more chemotherapy.
While Kobee experienced a couple of scary fevers, his side effects were pretty minor most days -- a little bit of nausea and some soreness and softness in his arm and wrist bones.
An avid foodie, Kobee also was disappointed when Dr. Huh told him that he couldn’t have sushi during treatment.
But Kobee didn’t let his disappointment hold him back. “He wanted to just get this done,” Hadley says. ”He really increased the amount how of fruits and veggies he ate during his treatment. He had two or three helpings of fruit every day -- and bowls and bowls of edamame.”
Support from many sources
Hadley says the outpouring of support that Kobee received from their community, church and classmates made a huge difference. All the boys in Kobee’s class shaved their heads, and the church started a fundraising account to help with the family’s expenses, such as fuel and food.
He believes that one of the things helped Kobee fight cancer was the fact that he cares for three pets: a guinea pig, a bearded dragon and a Labrador puppy.
“Caring for animals puts you in tune with life,” Hadley says. “It also teaches responsibility and gave Kobee something else to focus on besides cancer.”
Kobee has finished his treatment, but still returns every three months for checkups. He’s also excited that he can finally eat sushi again.
“When they told Kobee he could eat sushi again, he pigged out,” Hadley recalls.
As he tells others dealing with cancer, “Cancer is a miserable thing to have go through, but the experience built character and gave Kobee confidence that if he can beat cancer, he can conquer anything in life.”
Encouraged to give back
Kobee is the latest cancer survivor featured in Jason's Deli's Strike Through Cancer campaign, which raises money to support cancer research at MD Anderson. A photo of Kobee with his grandparents appeared on specially marked water bottles from October through December 2015.
“We felt encouraged to participate and share our story,” Hadley says. “Kobee wanted to to let people know that you can get through whatever you face – even if it’s as scary as cancer.”