Survival rates are often used by doctors as a standard way of discussing a person’s prognosis (outlook). 

The 5-year survival rate (or observed survival rate) refers to the percentage of patients who live at least 5 years after their cancer is diagnosed. Of course, many people live much longer than 5 years (and many are cured).

Five-year relative survival rates assume that some people will die of other causes and compare the observed survival with that expected for people without the cancer. This is a better way to see the effect of the cancer on survival.

To get 5-year survival rates, doctors have to look at people who were treated at least 5 years ago. If treatment has improved since then, people now being diagnosed with soft tissue sarcoma may have a more favorable outlook.

Survival rates are often based on previous outcomes of large numbers of people who had the disease, but they cannot predict what will happen in any individual’s case. Many other factors might affect a person’s outlook, like the type of sarcoma, the location of the tumor, the treatment received, and the age of the patient. For example, sarcomas of the arms or legs have a better outcome than those found in other places. Also, older patients tend to have worse outcomes than younger people. Your doctor can tell you how the numbers below may apply to you, as he or she is familiar with your particular situation.

The rates below are based on the stage of the cancer at the time of diagnosis. When looking at survival rates, it’s important to understand that the stage of a cancer does not change over time, even if the cancer progresses. A cancer that comes back or spreads is still referred to by the stage it was given when it was first found and diagnosed, but more information is added to explain the current extent of the cancer. (And the treatment plan is adjusted based on the change in cancer status.)

The overall relative 5-year survival rate of people with soft tissue sarcomas is around 50% according to statistics from the National Cancer Institute (NCI). These statistics include people with Kaposi sarcoma, which has a poorer outlook than many sarcomas. The NCI doesn’t use the AJCC staging system. Instead, they group sarcomas only by whether they are still confined to the primary site (called localized) have spread to nearby lymph nodes or tissues (called regional); or have spread (metastasized) to sites away from the main tumor (called distant). The 5-year survival rates for soft tissue sarcomas have not changed much for many years. The corresponding 5-year relative survival rates were:

• 83% for localized sarcomas (56% of soft tissue sarcomas were localized when they were diagnosed)
• 54% for regional stage sarcomas; (19% were in this stage)
• 16% for sarcomas with distant spread (16% were in this stage)

The 10-year relative survival rate is only slightly worse for these stages, meaning that most people who survive 5 years are probably cured.

For sarcomas of the arms and legs, Memorial Sloan-Kettering Cancer Center has survival rates broken down by AJCC stage (these are for observed, not relative survival):

Survival is worse when the sarcoma has developed somewhere other than the arms or legs. For example, the 5-year survival for retroperitoneal sarcomas is around 40% to 60%.

Research is ongoing in the area of soft tissue sarcomas . Because soft tissue sarcomas are rare and there are so many different types, it's has been hard to study it well. Still, scientists are learning more about causes and genetic differences in types of sarcomas, and they're looking for ways to improve treatments.

Basic research

Scientists have made progress in understanding how certain gene changes in soft tissue cells cause sarcomas to develop. This information is already being used in new tests to diagnose and classify sarcomas. This is important because knowing the exact type of sarcoma will help doctors select treatment tailored for each person. It's hoped that this information will also lead to new ways to treat these cancers, based on specific differences between normal and cancer soft tissue cells.

Classification

Classification of most cancers, including sarcomas, is based mostly on the way they look under a microscope. Recent research has shown that several different kinds of soft tissue sarcomas can look a lot alike under the microscope. By using new tests, researchers have found that most cancers that used to be called malignant fibrous histiocytoma (MFH) are actually high-grade forms of liposarcoma, rhabdomyosarcoma, leiomyosarcoma, other sarcomas, and even carcinomas or lymphomas. Tests to clearly clasiify the many types of soft tissue sarcoma are another key to deciding on the best treatment for each person.

Treatment

Researchers are looking for new and better ways to combine treatments, for example, using surgery, radiation, and chemo together, as well as new ways to treat soft tissue sarcomas.

Radiation

Doctors are looking at the best way to use radiation treatment. Studies are comparing radiation use before vs. after surgery to find out which has a greater impact on wound healing and long-term side effects. They're also looking at different types , doses, and schedules for radiation in an effort to find better and safer ways to use this treatment. Research is also being done to figure out when radiation is needed after surgery and when it's not.

Chemotherapy

Active research in chemotherapy for soft tissue sarcomas includes studies of new drugs and new ways to give the drugs that are available.

Targeted therapy

There's a lot of active research on the use of targeted drugs . These drugs specifically block substances in or on cancer cells that cause the cancers to grow. Targeted treatments are used for many kinds of cancer and doctors are trying to find out if they might also be helpful against sarcomas.

Anti-angiogenesis drugs

Drugs that block new blood vessel formation may help kill sarcomas by keeping them from being fed by blood vessels. These drugs are being tested in many studies.

Other treatments

Many other treatments are being tested and are only available in clinical trials. Examples include vaccine treatments and T-cell therapies for people with advanced soft tissue sarcomas. The use of heat (hyperthermia) and cold (cryosurgery) to destroy tumors is also being explored. Most of these studies are in very early stages, and it will be awhile before doctors know that they work well enough to be part of regular treatment for soft tissue sarcoma.

If you have signs or symptoms that suggest you might have a soft tissue sarcoma , the doctor will likely need to do tests to find out if you have cancer.

Medical history and physical exam

The doctor will ask about your medical history, including your family history, to learn if you have any possible risk factors. You will also be asked about your symptoms, such as when they started and how long you’ve had them.

Imaging tests

Imaging tests use sound waves, x-rays, magnetic fields, or radioactive substances to create pictures of the inside of your body. Imaging tests may be done for a number of reasons, such as:

• To look at suspicious areas that might be cancer,
• To see if, and how far, cancer has spread
• To help determine if treatment is working

Plain x-ray

A regular x-ray of the area with the lump may be the first test ordered. A chest x-ray may be done after you are diagnosed to see if the sarcoma has spread to the lungs.

CT (computed tomography) scans

A CT scan uses x-rays to make detailed cross-sectional images of your body. This test is often done if the doctor suspects a soft tissue sarcoma in the chest, abdomen (belly), or the retroperitoneum (the back of the abdomen). This test is also used to see if the sarcoma has spread to the lungs, liver, or other organs.

CT scans might be used to guide a biopsy needle into a tumor inside the body — the chest or abdomen, for example. This is called a CT-guided needle biopsy. (See below for more on biopsy.) You lie on the CT scanning table while a radiologist moves a biopsy needle toward the tumor. CT scans are repeated until the doctors are sure the needle is within the tumor.

MRI (magnetic resonance imaging)

MRI uses radio waves and strong magnets instead of x-rays to take pictures of the body. MRI scans are often part of the work-up of any tumor that could be a sarcoma. They're often better than CT scans in evaluating sarcomas in the arms or legs.

MRI provides a good picture of the extent of the tumor. It can show your health care team many things about the tumor, like where it is, how big it is, and sometimes even the type of tissue it comes from (like bone, fat, or muscle). MRIs are also very helpful in examining the brain and spinal cord.

Ultrasound

Ultrasound uses sound waves and their echoes to produce pictures of parts of the body. A small instrument called a transducer sends out sound waves and picks up the echoes as they bounce off the organs. A computer then converts the echoes into an image on a screen.

Ultrasound may be done before a biopsy to see if a lump is a cyst, meaning if it has fluid in it and is likely not cancer, or if it's solid and more likely a tumor. This test is often not needed if a CT or MRI was done.

PET (positron emission tomography) scan

PET scans use a form of radioactive sugar that's put into the blood. Because cancers use glucose (sugar) at a higher rate than normal tissues, the radioactivity collects in the cancer. A scanner can then spot the radioactive deposits.

A PET scan is useful when your doctor thinks the cancer has spread but doesn't know where. It can be used instead of many different x-rays because it scans your whole body. Often the PET scan is used with a CT scan (called a PET/CT scan). This helps decide if changes seen on the CT scan are cancer or something else. PET isn't often used for sarcoma, but it can be helpful in some cases.

Biopsy

If a soft tissue sarcoma is suspected based on exams and imaging tests, a biopsy is needed to know for sure that it's a sarcoma and not another type of cancer or a benign (not cancer) disease. In a biopsy, the doctor takes out a small piece of the tumor. This tissue is looked at under a microscope and other lab tests may be done as well.

Several types of biopsies are used to diagnose sarcomas. Doctors experienced with these tumors will choose one, based on the size and location of the tumor. Most prefer to use a fine needle aspiration or a core needle biopsy as the first step. See Testing Biopsy and Cytology Specimens for Cancer to learn more about the types of biopsies, how the tissue is used in the lab to diagnose cancer, and what the results may show.

You might want to ask about your surgeon’s experience doing biopsies. Proper biopsy technique is a very important part of successfully treating soft tissue sarcomas. An improper biopsy can lead to tumor spread and problems removing the tumor later on.

About half of soft tissue sarcomas start in an arm or leg. Most people notice a lump that's grown over time (weeks to months). The lump may or may not hurt.

When sarcomas grow in the back of the abdomen (the retroperitoneum), the symptoms often come from other problems the tumor is causing. For instance, they may cause blockage or bleeding of the stomach or bowels. They can press on nerves, blood vessels, or nearby organs. They can grow large enough for the tumor to be felt in the belly. Sometimes the tumors cause pain. About 4 of 10 sarcomas begin in the abdomen (belly).

In rare cases, sarcomas can start in the chest or in the head or neck. .

If you have any of the these problems, see a doctor right away:

• A new lump or a lump that's growing (anywhere on your body)
• Abdominal pain that's getting worse
• Blood in your stool or vomit
• Black, tarry stools (when bleeding happens in the stomach or bowels, the blood can turn black as it's digested, and it might make the stool very black and sticky)

These symptoms are more often caused by things other than sarcoma, but they still need to be checked out by a doctor.

Cancer survivors can be affected by a number of health problems, but often their greatest concern is facing cancer again. If a cancer comes back after treatment it is called a recurrence. But some cancer survivors may develop a new, unrelated cancer later. This is called a second cancer. No matter what type of cancer you have had, it's still possible to get another (new) cancer, even after surviving the first.

Unfortunately, being treated for cancer doesn’t mean you can’t get another cancer. People who have had cancer can still get the same types of cancers that other people get. In fact, certain types of cancer and cancer treatments can be linked to a higher risk of certain second cancers.

Survivors of soft tissue sarcoma can get any type of second cancer, but they have an increased risk of these cancers, depending on where the tumor was and the type of treatment used:

• A second soft-tissue sarcoma (this is different than the first one coming back)
• Bone cancer
• Stomach cancer
• Thyroid cancer
• Melanoma of the skin
• Acute myeloid leukemia (AML)

Some second bone cancers may be due to treatment with radiation therapy. Radiation and chemotherapy likely contribute to the cases of leukemia.

What you can do

After treatment for soft tissue sarcoma, you should still see your doctor regularly. Tests will be done to look for signs the cancer has come back or spread. But experts do not recommend any additional testing to look for second cancers in patients without symptoms. Let your doctor know about any new symptoms or problems, because they could be caused by the cancer coming back, by a new disease, or by a second cancer.

Patients who have completed treatment should follow the American Cancer Society guidelines for the early detection of cancer.

The Children’s Oncology Group has guidelines for the follow-up of patients treated for cancer as a child, teen, or young adult, including screening for second cancers. These can be found at www.survivorshipguidelines.org.

All survivors of soft tissue sarcoma should avoid tobacco smoke , as smoking increases the risk of many cancers, as well as other health problems.

To help maintain good health, survivors should also:

• Get to and stay at a healthy weight
• Adopt a physically active lifestyle
• Consume a healthy diet, with an emphasis on plant foods
• Limit alcohol use to no more than 1 drink per day for women or 2 per day for men

These steps may also lower the risk of some cancers.

See Second Cancers in Adults for more information.

For some people with soft tissue sarcoma , treatment may remove or destroy the cancer. Completing treatment can be both stressful and exciting. You may be relieved to finish treatment, but find it hard not to worry about cancer coming back. This is a very common if you've had cancer.

For other people, the cancer may never go away completely. They might get regular treatments with chemotherapy, radiation therapy, or other therapies to try to help keep the cancer in check. Learning to live with cancer that does not go away can be difficult and very stressful.

Life after cancer means returning to some familiar things and also making some new choices.

Follow-up care

When treatment ends, your doctors will still want to watch you closely. It's very important to go to all of your follow-up appointments. During these visits, your doctors will ask questions about any problems you have and might do exams and lab tests or x-rays and scans to look for signs of cancer or treatment side effects. Almost any cancer treatment can have side effects. Some may last for a few weeks to months, but others can last the rest of your life. This is the time for you to talk to your cancer care team about any changes or problems you notice and any questions or concerns you have.

A t first these visits may be every 3 to 6 months. After 2 to 3 years, you may go to an every 6 month schedule for another few years. You can expect at least yearly check-ups for a long time after that. Chest x-rays and other imaging tests of the place the tumor was will be done at some of these visits. This helps the doctor watch for any signs that the sarcoma has come back.

During this time, it's very important to report any new symptoms to the doctor right away so that any problems can be found early, when they're easier to treat.

Depending on the type of treatment you had, physical therapy and rehabilitation may be a very important part of recovery.

Ask your doctor for a survivorship care plan

Talk with your doctor about developing a survivorship care plan for you. This plan might include: 

• A suggested schedule for follow-up exams and tests
• A schedule for other tests you might need in the future, such as early detection (screening) tests for other types of cancer, or tests to look for long-term health effects from your cancer or its treatment
• A list of possible late- or long-term side effects from your treatment, including what to watch for and when you should contact your doctor
• Diet and physical activity suggestions
• Reminders to keep your appointments with your primary care provider (PCP), who will monitor your general health care 

Keeping health insurance and copies of your medical records

Even after treatment, it’s very important to keep health insurance. Tests and doctor visits cost a lot, and even though no one wants to think of their cancer coming back, this could happen.

At some point after your cancer treatment, you might seei a new doctor who doesn’t know your medical history. It’s important to keep copies of your medical records to be able to give your new doctor the details of your diagnosis and treatment. Learn more in Keeping Copies of Important Medical Records.

Can I lower my risk of soft tissue sarcoma progressing or coming back?

If you have (or have had) a soft tissue sarcoma, you probably want to know if there are things you can do that might lower your risk of the cancer growing or coming back, such as exercising, eating a certain type of diet, or taking nutritional supplements. Unfortunately, it’s not yet clear if there are things you can do that will help.

Adopting healthy behaviors such as not smoking, eating well, getting regular physical activity, and staying at a healthy weight might help, but no one knows for sure. However, we do know that these types of changes can have positive effects on your health that can extend beyond your risk of soft tissue sarcoma or other cancers.

About dietary supplements

So far, no dietary supplements (including vitamins, minerals, and herbal products) have been shown to clearly help lower the risk of soft tissue sarcoma progressing or coming back. This doesn’t mean that no supplements will help, but it’s important to know that none have been proven to do so.

Dietary supplements are not regulated like medicines in the United States – they do not have to be proven effective (or even safe) before being sold, although there are limits on what they’re allowed to claim they can do. If you’re thinking about taking any type of nutritional supplement, talk to your health care team. They can help you decide which ones you can use safely while avoiding those that might be harmful.

If the cancer comes back

If the cancer does recur at some point, your treatment options will depend on where the cancer is located, what treatments you’ve had before, and your health. For more information on how recurrent cancer is treated, see Treatment of Soft Tissue Sarcomas, by Stage .

For more general information on recurrence, you may also want to see Understanding Recurrence.

Could I get a second cancer after treatment?

People who’ve had a soft tissue sarcoma can still get other cancers. In fact, sarcoma survivors are at higher risk for getting some other types of cancer. Learn more in Second Cancers After Soft Tissue Sarcoma

Getting emotional support

Some amount of feeling depressed, anxious, or worried is normal when cancer is a part of your life. Some people are affected more than others. But everyone can benefit from help and support from other people, whether friends and family, religious groups, support groups, professional counselors, or others. Learn more in Life After Cancer.

The American Cancer Society's estimates for soft tissue sarcomas in the United States for 2018 are (these statistics include both adults and children):

• About 13,040 new soft tissue sarcomas will be diagnosed (7,370 cases in males and 5,670 cases in females).
• 5,150 Americans (2,770 males and 2,380 females) are expected to die of soft tissue sarcomas.

The most common types of sarcoma in adults are:

• Undifferentiated pleomorphic sarcoma (previously called malignant fibrous histiocytoma)
• Liposarcoma
• Leiomyosarcoma

Certain types occur more often in certain parts of the body more often than others. For example, leiomyosarcomas are the most common type of sarcoma found in the abdomen (belly), while liposarcomas and undifferentiated pleomorphic sarcomas are most common in legs. But pathologists (doctors who specialize in diagnosing cancers by how they look under the microscope), may not always agree on the exact type of sarcoma. Sarcomas of uncertain type are very common.

Visit the American Cancer Society’s Cancer Statistics Center for more key statistics.

A risk factor is anything that changes your chance of getting a disease like cancer. Different cancers have different risk factors. For example, unprotected exposure to strong sunlight is a risk factor for skin cancer. Smoking is a risk factor for cancers of the lung, and many other cancers. But risk factors don’t tell us everything. Having a risk factor, or even many, doesn’t mean that you will get the cancer. Also, many people get cancer without having a risk factor.

Injury and lifestyle factors such as smoking, diet, and exercise are NOT linked to the risk for soft tissue sarcoma . But the injury issue has caused some confusion in the past. One reason is that an injured area might swell. That swelling could look like a tumor, but it isn't one. Also, when you are injured, the pain may draw your attention to the injured area. A doctor may check the area, and x-rays or other imaging studies may be done. This can make it more likely that any sarcoma that's there will be discovered, even though it may have been there for some time.

Still, scientists have found a few risk factors that make a person more likely to develop soft tissue sarcomas:

Radiation given to treat other cancers

Radiation exposure accounts for less than 5% of sarcomas. But patients might develop sarcomas from radiation given to treat other cancers, like breast cancer or lymphoma . The sarcoma often starts in the part of the body that was treated with radiation. The average time between the radiation treatments and the diagnosis of a sarcoma is about 10 years.

Radiation therapy techniques have improved steadily over several decades. Treatments now target cancers more precisely, and more is known about selecting radiation doses. These advances are expected to reduce the number of cancers caused by radiation therapy. But because these cancers take so long to develop, the results of these changes may not be seen for a long time. Still, radiation therapy is used only when its benefits (improved survival rate and relief of symptoms) outweigh its risks . To learn more, see Second Cancers in Adults.

Family cancer syndromes

Family cancer syndromes are disorders caused by gene defects (mutations) that people are born with (often inherited from a parent) that are linked to a high risk of getting certain cancers. Some family cancer syndromes increase a person's risk of developing soft tissue sarcomas.

Neurofibromatosis

Neurofibromatosis is also known as von Recklinghausen disease. It usually runs in families and causes many benign (not cancer) tumors that form in nerves under the skin and in other parts of the body (These are called neurofibromas.) It's caused by a defect (mutation) in genes called NF1 and NF2. About 5% of people with neurofibromatosis will develop a sarcoma in a neurofibroma.

Gardner syndrome

Gardner syndrome is a disease caused by defects in the APC gene. This syndrome is a type of familial adenomatous polyposis (FAP), and people with it get many polyps in the colon (and intestines) and have a high risk of getting colon cancer . It also causes problems outside the colon, including desmoid tumors. (These are discussed in What Is a Soft Tissue Sarcoma? )

Li-Fraumeni syndrome

Li-Fraumeni syndrome is caused by inherited defects in the TP53 gene. People affected by this syndrome have a high risk of cancer, such as breast cancer, brain tumors, leukemia , and sarcomas. Still, only 10 to 20 out of 100 people with Li-Fraumeni syndrome will develop a soft tissue sarcoma. People with this syndrome are sensitive to the cancer-causing effects of radiation. So if they have a cancer that's treated with radiation, they have a very high chance of developing a new cancer in the part of the body that was treated.

Retinoblastoma

Retinoblastoma is an eye cancer in children that can be caused by defects in the RB1 gene. Children with this gene defect also have a higher risk of developing bone or soft tissue sarcomas, especially if the retinoblastoma was treated with radiation.

Werner syndrome

Werner syndrome is caused by defects in the RECQL2 gene. Children with this syndrome have problems like those seen in the elderly. These include cataracts, skin changes, and clogged heart arteries (arteriosclerosis) which can lead to heart attacks. They also have an increased risk of cancer, including soft tissue sarcomas.

Gorlin syndrome

Gorlin syndrome is also called nevoid basal cell carcinoma syndrome (NBCCS). It's caused by defects in the PTCH1 gene. People with this syndrome have a high risk of developing many basal cell skin cancers. They also have an increased risk of fibrosarcoma and rhabdomyosarcoma.

Tuberous sclerosis

Tuberous sclerosis can be caused by a defect in the TSC1 and/or TSC2 gene. People with this syndrome often have seizures and learning problems. They get benign (not cancer) tumors in many different organs. They also have kidney problems, often along with a kidney tumor called angiomyolipoma. People with tuberous sclerosis have an increased risk of rhabdomyosarcoma.

Damaged lymph system

Lymph is a clear fluid containing immune system cells that's carried throughout the body by a series of lymph vessels. These vessels connect lymph nodes (small bean-shaped collections of immune system cells). When lymph nodes have been removed or damaged by radiation therapy, lymph fluid can build up and cause swelling. This is called lymphedema.

Lymphangiosarcoma (a malignant (cancer) tumor that develops in lymph vessels) is a very rare complication of chronic lymphedema.

Chemicals

Exposure to vinyl chloride (a chemical used in making plastics) is a risk factor for developing sarcomas of the liver, but it hasn't been proven to cause soft tissue sarcomas. Arsenic has also been linked to a type of liver sarcoma but not soft tissue sarcoma. Exposure to dioxin and to herbicides that contain phenoxyacetic acid at high doses (such as might occur in people who work on farms) may also be risk factors, but this isn't known for certain. There's no evidence that herbicides (weed killers) or insecticides, at levels encountered by the general public, cause sarcomas.

Scientists don't know exactly what causes most soft tissue sarcomas , but they have found some risk factors that can make a person more likely to develop these cancers. And research has shown that some of these risk factors affect the genes in cells in the soft tissues.

Researchers have made great progress in understanding how certain changes in DNA (pieces of genes) can cause normal cells to become cancer. DNA carries the instructions for nearly everything our cells do. We usually look like our parents because they are the source of our DNA. But DNA affects more than just the way we look.

The DNA is made of genes. Genes carry the recipes for making proteins, the molecules that control all cell functions. Some genes contain instructions for proteins that control when our cells grow and divide.

• Certain genes that promote cell division are called oncogenes.
• Others that slow down cell division or cause cells to die at the right time are called tumor suppressor genes.

Cancers can be caused by DNA mutations (defects) that turn on oncogenes or turn off tumor suppressor genes.

Many family cancer syndromes have been found in which inherited DNA mutations cause a very high risk of developing breast, colon, kidney, eye, or other cancers. Some of these syndromes are also linked to an increased risk of developing soft tissue sarcomas. (These syndromes were noted in Risk Factors for Soft Tissue Sarcomas) The syndromes are caused by defects (mutations) in genes that can be inherited (passed on) from a parent. Some of these gene defects can be found through testing. For more on this, see Family Cancer Syndromes and Genetics and Cancer.

DNA mutations in soft tissue sarcoma are common. But they're usually acquired during life rather than having been inherited before birth. Acquired mutations may result from exposure to radiation or cancer-causing chemicals. In most sarcomas, they occur for no apparent reason.

Researchers still don't know why most soft tissue sarcomas develop in people who have no apparent risk factors.

People who have a strong family history of soft tissue sarcomas or who have had other cancers when they were young, might want to talk to a doctor about the benefits and disadvantages of genetic testing. The test results should always be explained by a genetic counselor or a specially trained doctor who can interpret the results and advise high-risk patients about the need for early cancer detection tests.

Families with a history of certain inherited conditions caused by defects in certain genes have an increased risk of soft tissue sarcomas. The changed (mutated) genes can be detected by genetic testing, so family members should discuss this option with their doctors. They should also see their doctor right away if they notice any lumps or growths. (The inherited conditions linked to soft tissue sarcoma are covered in Risk Factors for Soft Tissue Sarcomas)

No screening tests and exams are recommended for people who have no family history of sarcoma or other sarcoma risk factors. For these people, the best approach to early detection is to tell their health care provider about any unexplained lumps or growths or other symptoms that may be caused by a soft tissue sarcoma.