Soft tissue sarcomas are a group of cancers that begin in areas that surround, connect or support the body¡¯s structure or organs.
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
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.
Learn more about childhood soft tissue sarcoma:
- Childhood soft tissue sarcoma symptoms
- Childhood soft tissue sarcoma diagnosis
- Childhood soft tissue sarcoma treatment
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.
Helping my daughter overcome childhood soft tissue sarcoma
When my 11-year-old daughter, Averi, fell at school, we didn¡¯t think anything of it. But when the bruise didn¡¯t go away after several weeks, we got it checked out. Her pediatrician said it looked like a bunch of blood vessels because the bruise was right above the muscle. But she wanted to biopsy it to be sure.
On June 17, 2021, Averi¡¯s doctors performed a needle biopsy and removed a mass on her hip half the size of a tennis ball. What was supposed to be a quick surgery ended up changing our lives forever.
After several long weeks of waiting on the pathology results, Averi was diagnosed with an aggressive soft tissue sarcoma. Thankfully, the cancer had not spread to her bones or lungs.
We were devastated. Nothing prepares you for hearing your child has cancer.
But I knew if anyone could overcome this, it would be Averi. Since birth, she has always been a brave and optimistic child.
Family bonding through a childhood cancer diagnosis
For several years, my husband, Derek, our three daughters and I have run a family vlog to share funny skits, silly challenges and fun videos of our adventures. We kept it going during Averi¡¯s cancer treatment to inspire other families.
So, when we wanted to have family shirts made, we came up with the slogan ¡°Team brAVERI.¡± Derek created the logo because Averi loves sunflowers and rainbows, and she is very brave. Averi is naturally positive; she has an old spirit but is young at heart at the same time. She had moments of sadness from the pain and long days during her treatment, but I remember her telling us: ¡°I feel like it¡¯s better to be happy than mad. It¡¯s not that big of a deal because you can¡¯t do anything about it. You can¡¯t run away from it.¡±
Undergoing treatment for soft tissue sarcoma Averi underwent five surgeries and 14 rounds of chemotherapy at a nearby hospital, along with five-and-a-half weeks of proton therapy at MD Anderson Proton Therapy Center under the care of radiation oncologist,?
After doing our research, we felt better knowing Averi would receive proton therapy because the radiation targets the tumor area while avoiding healthy tissue nearby. We didn¡¯t want her to have growth or fertility issues as she grew up. During chemotherapy, Averi¡¯s appetite remained steady. She has always loved food, watching cooking shows and trying new things. She kept eating throughout chemotherapy treatments as well.
The first week of treatment was the hardest. Averi developed a fever and had an allergic reaction to a platelet transfusion. After a few days in ICU, we got her fever down and she was able to resume treatment.
Toward the end of proton therapy, Averi experienced a sunburn-like reaction from the radiation, and her skin began to peel. We gave her Tylenol before each treatment to help with the pain. She listened to her favorite music during treatment and bonded with her care team. They loved Averi¡¯s spirit. That helped her look forward to treatments.
On Dec. 17, 2021, Averi rang the gong at MD Anderson Proton Therapy Center to celebrate her last proton therapy treatment. It was such an emotional celebration with our family. Several months later, in April 2022, she rang the bell to mark the end of chemotherapy treatments.
It was exhausting and difficult to juggle our schedules with our family of five. But we¡¯ve grown closer from this experience, even on our bad days. Like Derek said at her celebration, ¡°We prayed for guardian angels, and we got guardian angels in scrubs.¡±
How to get through the hard days
It¡¯s hard to be thrown into cancer treatment as a parent. There are a lot of long days. Our two other daughters, Adyson and Aaliyah, still had school and sports, so we learned to let people help us. Our nurses also made a huge difference. Advanced practice registered nurse Bethany Sphar, nurse Shiji Santhosh and our radiation therapists kept us informed throughout proton therapy treatments. Knowing what to expect and how to help your child manage side effects makes things easier.
Here¡¯s more advice I¡¯ve gained from my own experience caring for Averi:
- Pack snacks. Bringing meals and snacks from home provides comfort and saves money. If other family members are home during meal time, make a point to eat dinner together through video calls.
- Take care of yourself. It¡¯s not selfish to take care of you. Lean on the nurses and doctors. They¡¯re here to help you.
- Let people help. In the beginning, we tried to do everything on our own but quickly learned to take the blessing. Take the meals, gift cards or rides for the other children in your family.
- Let both parents be present. It¡¯s important for both parents to take on the emotions equally. Derek and I took turns being with Averi during treatments and hospital stays. Not only did this give us individual time with Averi; but it also gave us time with our other two daughters at home.
- Network with other families. Connecting with other patients gave Averi a way to talk with other kids her age who understood what she was going through.
After 308 days of treatment, Averi was declared cancer-free. Cancer has taught us how to recognize what¡¯s important and what¡¯s not. We hope that our story brings light to others about the positive side of cancer.
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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.
Customized care
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.
Loving yourself allows you to enjoy the rollercoaster of life you¡¯ve been given.
MD Anderson's Children's Cancer Hospital
