Sarcoma — cancer of the body’s connective tissue — is uncommon, making up less than 1% of all cancer diagnoses in the United States.
That’s good because it means few people are affected by this quick-spreading cancer. But that also means many people don’t know about it — and often don’t seek treatment when symptoms show up.
Sarcoma often appears as a painless lump or swelling on the skin. It can grow noticeably bigger in weeks or even days. Frequent exercisers sometimes mistake sarcoma for having built muscle — but one clue to be concerned is that you see growth just on one side.
“They’ve been working out and their right leg is bigger than their left. They think they must be doing more squats on that side because their pant leg is getting tighter,” says Krista A. Goulding, M.D., M.P.H., an orthopedic surgeon at Mayo Clinic in Phoenix, Arizona.
Mistaking a mass for something else is a problem because prognosis is better when sarcoma is treated earlier — especially before it spreads.
“The best thing you can do if you notice a mass bigger than a golf ball or a mass that seems to be getting bigger by the day or week is to get it checked out as soon as you can,” Goulding says.
Dr. Goulding shares five things you should know about this less familiar cancer.
The more than 75 different types of sarcomas usually have one thing in common: A fast-growing lump.
Sarcoma starts in skeletal or connective tissue like bones, fat, muscle, blood vessels, nerves and tendons. About half of sarcomas start on a leg or arm. Another 40% start on the abdominal wall, but sarcomas can occur anywhere. The neck, chest and pelvis also are possible.
The most common sign of sarcoma is a mass like a lump or swelling that appeared suddenly or grows quickly. It might feel firm or warm to the touch. But you can’t rule out sarcoma just because the lump isn’t firm or warm. With so many kinds of sarcoma, the signs and symptoms can vary. A sarcoma also can look or feel like:
- Purplish spots that look like a bruise or scar.
- A lesion that bleeds when scratched or bumped.
- An ulcer or wound that doesn’t heal.
- Bone pain or weakness.
- Weakness of an arm or leg.
Less commonly, sarcoma can be a bulging or swelling of the eye; bleeding in the nose, throat, or ears; blood in the urine or trouble urinating; or a mass or bleeding in the vagina or rectum.
What are the major types of sarcoma?
Bone sarcomas (osteosarcomas) and soft-tissue sarcomas.
Osteosarcomas are most common in adolescents, young adults and people over age 60. A typical symptom is bone pain.
“It’s an achy pain that isn’t related to an activity injury,” Goulding says.
Another sign of bone sarcoma is bone that breaks unexpectedly, either for no apparent reason or from a minor injury.
Soft-tissue sarcomasmost commonly start on a limb. They might go unnoticed until the mass of cells grows big enough to bulge out or press on a nerve, organ or muscle, causing pain, tingling or numbness.
Who is at risk for sarcoma?
There are a few factors that increase the risk of sarcoma:
- Exposure to chemicals like herbicides, vinyl chloride, arsenic and dioxin over a long period time.
- Exposure to high doses of radiation, especially radiation treatment for other cancers.
- Inherited syndromes like hereditary retinoblastoma, Li-Fraumeni syndrome, familial adenomatous polyposis (FAP), tuberous sclerosis and Werner syndrome.
- Conditions such as Paget’s disease of bone and neurofibromatosis type 1.
- The virus human herpesvirus 8 is related to Kaposi’s sarcoma in people with severely weakened immune systems, such as advanced HIV/AIDS.
- Long-standing, chronic lymphedema, or swelling caused by fluid buildup.
Are there routine screening tests for sarcomas?
Routine sarcoma screenings aren’t recommended for the general public. People with risk factors such as previous cancer, known genetic mutations or a family history of sarcoma may be monitored. Everyone should tell their primary care team about any new or unexplained lumps.
Sarcoma can be difficult to diagnose because it can be confused with other conditions that have similar symptoms. Other causes might be evaluated by:
- Blood tests. Blood tests won’t show sarcoma, but they can show signs of illness or disease including cancer.
- Skin exam. Your provider might do a whole-body, careful look.
- Imaging tests. X-ray, ultrasound, CT scan, MRI, and maybe PET or bone scans can see inside your body to look for features consistent with cancer and to understand its extent.
- Biopsy. In a biopsy, a small piece of tissue is removed from the body and tested by a pathologist to make a diagnosis.
Your primary care team might refer you to an orthopedic oncologist (cancer doctor) who has experience with managing sarcoma.
“Ideally, the patient gets quickly to an orthopedic oncologist and gets a diagnosis,” Goulding says. “We do know that being seen in high-volume centers makes a difference in terms of outcome for patients.”
Has sarcoma treatment improved?
Research continues to be done to target and personalize sarcoma treatment to improve outcomes, Goulding says.
Treatment depends on the type of tissue and where the cancer is in the body, the size of the tumor and how aggressive it seems to be, as well as your baseline overall health. Sometimes multiple approaches — like surgery, radiation, chemotherapy, immunotherapy and targeted medications — will be combined.
Sometimes a limb needs to be amputated to stop sarcoma from spreading. But reconstruction technology is improving, giving patients more function from prosthetic devices.
You are an important part of your own care team. Feel empowered to ask questions and advocate for what’s important to you. Receiving care quickly or at an earlier stage for sarcoma can make a lot of difference.