According to the Mayo Clinic, sarcoma is a type of cancer that occurs in various locations of the body. Sarcoma is a general term used to encompass a broad group of cancers that begin in the bones as well as in the soft (connective) tissues (soft tissue sarcoma). Although there are more than 70 types of sarcomas, medical professionals often refer to it as the “forgotten cancer” because it is rarer than several other cancers. Despite it being slightly less common, the American Cancer Society (ACS) still estimates that more than 10,000 people will be diagnosed with sarcoma this year and that approximately 5,130 others will die from the disease. This July, take a moment to commemorate Sarcoma Awareness Month by learning some useful facts about the disease’s risk factors, symptoms and treatment.

Sarcoma: General Information, Risk Factors and Symptoms

Sarcomas can develop in a variety of tissue structures, like the muscles, nerves, joints, fat, blood vessels and bone. Here is some important information and key statistics on sarcomas from the American Cancer Society:

• Medical professionals will diagnose approximately 13,190 new cases of soft tissue sarcomas in individuals in 2022
• Roughly 5,130 people will die from sarcomas this year
• In adults, some of the most common types of sarcomas are liposarcoma, leiomyosarcoma and undifferentiated pleomorphic sarcoma (previously called malignant fibrous histiocytoma)

The ACS reports that certain risk factors increase a person’s chances for developing sarcomas. These include:

• Radiation used to treat other cancers. Altogether, exposure to radiation accounts for less than 5% of sarcomas, but it still happens. The average time between radiation treatments and a sarcoma diagnosis is usually about ten years
• Damaged lymph system. When someone has a damaged lymph system (from being removed entirely or being damaged by radiation therapy), fluid in the area can build up and cause swelling. This condition is called lymphedema. In some cases, chronic lymphedema can lead to lymphangiosarcoma, a cancerous tumor that affects the lymph vessels
• Exposure to chemicals. Exposure to certain chemicals, like vinyl chloride (which is used to manufacture plastics) and arsenic can contribute to the development of sarcoma of the liver
• Certain family cancer syndromes, which are disorders that result from genetic defects that people are born with. The examples below are types of family cancer syndromes that cause their own unique problems in addition to contributing to the development of sarcomas
• Neurofibromatosis, which typically runs in families and causes benign tumors in the nerves and other parts of the body
• Gardner syndrome, which is caused by a defect in the APC gene. People who develop Gardner syndrome develop polyps in the colon and intestines and face a higher risk for getting colon cancer. Gardner syndrome can also cause issues outside of the colon, like desmoid tumors
• Inherited defects in the TP53 gene cause Li-Fraumeni syndrome. While having Li-Fraumeni syndrome alone only slightly raises a person’s chance for developing sarcomas, if someone with the syndrome is exposed to radiation, their chances of developing the disease increase significantly
• Werner syndrome, which is a condition that primarily affects children, causing them to experience problems typically associated with the elderly. For example, children with Werner syndrome can develop clogged heart arteries, skin changes and cataracts, and they also incur a higher risk for developing sarcomas
• Retinoblastoma, an eye cancer that typically presents in children. Children with retinoblastoma have a greater chance of developing bone or soft tissue sarcomas, particularly when the disease was previously treated with radiation
• Gorlin syndrome, or nevoid basal cell carcinoma syndrome
• Tuberous sclerosis, a syndrome that causes seizures, learning problems and kidney problems (including tumors)

Diagnosis and Treatment

According to the ACS, approximately half of all soft tissue sarcomas originate in the arm or leg. Here is a brief list from the ACS of potential warning signs and symptoms associated with sarcomas to keep an eye out for:

• A lump that grows over weeks or months in the arm, leg, or another area of the body. The growth can be painful or non-painful
• Depending on the location of the sarcoma, the person may experience symptoms that stem from other issues that the tumor causes. For example, when a sarcoma grows in the back of the abdomen, the person may experience a blockage or bleeding from the stomach and/or bowels. Sarcomas can also cause issues by impinging on nearby nerves, blood vessels or organs
• In especially rare cases, sarcomas grow in the chest, head or neck areas

The ACS advises that you contact a doctor if you notice a new lump or a lump that is growing (anywhere on your body), if you experience worsening abdominal pain, if you observe blood in your stool or vomit, or if you have black, tarry stools. Although these symptoms can be caused by several conditions other than sarcomas, it is still important to get checked out by a doctor.

The ACS says that the treatment options for sarcomas depend on the disease’s type, stage and location – as well as the person’s overall physical health. The most effective way to get rid of a sarcoma is to remove it surgically, so surgery will be part of a patient’s treatment plan so long as it is possible. Treating sarcomas can be particularly complicated; according to the ACS, studies show that patients with the disease tend to have a better medical outcome when they receive treatment at cancer centers that specialize in treating them. Sometimes surgery is not an option with sarcomas, like if the disease is in an area that is not a limb (e.g. the head, neck or abdomen). If full or partial surgery is not an option, treatment with or without chemotherapy may be a viable alternative.

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