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Sarcoma, Soft Tissue - Introduction

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2016

ON THIS PAGE: You will find some basic information about this disease and the parts of the body it may affect. This is the first page of Cancer.Net’s Guide to Soft-Tissue Sarcoma. To see other pages, use the menu. Think of that menu as a roadmap to this full guide.

Cancer begins when healthy cells change and grow out of control, forming a mass called a tumor. A tumor can be cancerous or benign. A cancerous tumor is malignant, meaning it can grow and spread to other parts of the body. A benign tumor means the tumor can grow but will not spread.

About sarcoma

Sarcoma can start in any part of the body, such as the bone or soft tissue.

  • 50% begin in an arm or leg

  • 40% start in the torso or abdomen

  • 10% occur in the head or neck

Both children and adults can develop a sarcoma. It is rare in adults, accounting for about 1% of all adult cancers. However, sarcomas are more common in children, representing about 15% of all childhood cancers.

This section covers sarcoma of the soft tissues. Learn more about sarcoma that starts in a bone.

About soft-tissue sarcoma

Soft-tissue sarcoma (STS) is a group of cancers that begin in the connective tissues that support and connect the body, including:

  • Blood vessels

  • Fat cells

  • Lining of joints

  • Lymph vessels

  • Muscle

  • Nerves

  • Tendons

As a result, STS can occur almost anywhere in the body. When an STS begins and is small, it can go unnoticed because it usually does not cause problems. However, as an STS grows, it can interfere with the body's normal functions.

Because there are at least 50 different types of STS, it is more accurate to describe them as a family of related diseases, rather than as a single disease. Specific types of sarcoma are often named according to the normal tissue cells they most closely resemble, as listed below. This is different from most other types of cancer, which usually are named for the part of the body where the cancer began. Some sarcomas do not look like any type of normal tissue and are thought to come from stem cells or other primitive cells. Stem cells are special cells that can mature into specific tissues or organs.

The list below describes several common types of STS and related connective tissue tumors.

Name of Sarcoma

Related Normal Tissue Type

Angiosarcoma

Blood or lymph vessels

Desmoid tumor, also called deep fibromatosis

Fibroblasts, which are the most common type of cells in connective tissue

Ewing family of tumors

No obvious related normal tissue; may be a tumor of stem cells

Fibrosarcoma

Fibroblasts, which are the most common type of cells in connective tissue

Gastrointestinal stromal tumor (GIST)

Specialized neuromuscular cells of the digestive tract

Kaposi sarcoma

Blood vessels

Leiomyosarcoma

Smooth muscle

Liposarcoma

Fat tissue

Myxofibrosarcoma

Connective tissue

Malignant peripheral nerve sheath tumor (MPNST), also known as neurofibrosarcoma

Cells that wrap around nerve endings, similar to the way insulation wraps around a wire

Rhabdomyosarcoma

Skeletal muscle

Synovial sarcoma

No obvious related normal tissue; may be a tumor of stem cells

Undifferentiated pleomorphic sarcoma (UPS), often referred to as malignant fibrous histiocytoma (MFH) in the past

No obvious related normal tissue; may be a tumor of stem cells or a distant relative of rhabdomyosarcoma

Expert pathologists have described and classified many types and subtypes of sarcomas. A pathologist is a doctor who uses a microscope to look at the tumor specimen to make the diagnosis. Pathologists are looking for new ways to quickly determine a tumor's subtype because this helps to understand the prognosis and to decide the treatment plan. Looking at a tumor's abnormal genetics may help determine its characteristics and predict which treatments will be most effective. The use of targeted therapy has resulted in major advances in treating several types of sarcoma, including GIST, dermatofibrosarcoma protuberans (DFSP), tenosynovial giant cell tumor, and desmoid tumors. 

Pathologists also describe sarcoma by its “grade,” which describes how much cancer cells look like healthy cells when viewed under a microscope. The grade can help the doctor predict how quickly the sarcoma will grow and spread. In general, the lower the tumor’s grade, the better the prognosis, which refers to the chance of successful treatment and outcome. Learn more about grade in the Stages and Grades section.

Looking for More of an Introduction?

If you would like more of an introduction, explore these related items. Please note that these links will take you to other sections on Cancer.Net:

The next section in this guide is Statistics. It helps explain how many people are diagnosed with this disease and general survival rates. Or, use the menu to choose another section to continue reading this guide.  

Sarcoma, Soft Tissue - Statistics

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2016

ON THIS PAGE: You will find information about how many people are diagnosed with this type of cancer each year. You will also learn some general information on surviving the disease. Remember, survival rates depend on several factors. To see other pages, use the menu.

This year, approximately 12,310 people (6,980 men and 5,330 women) will be diagnosed with soft-tissue sarcoma in the United States. An estimated 4,990 adults and children (2,680 males and 2,310 females) are expected to die of the disease this year.

Sarcomas are described as being localized, regional, or metastatic when they are first found.

  • Localized means the tumor is only in 1 area of the body.

  • Regional means the tumor involves tissues in a localized area and there is also tumor in or attached to nearby tissues or organs.

  • Metastatic means the sarcoma has spread to parts of the body far away from where the sarcoma started.

When the sarcoma starts in an arm or leg, the 5-year survival rates are slightly higher for each stage when compared with sarcoma that starts in other locations.

This section includes information on how often sarcomas show up as localized, regional, or metastatic. In addition, there is information on survival rates for each situation. This information applies for sarcomas in general and may not apply to a specific type of sarcoma. Talk with your health care team for more information regarding your specific diagnosis.

In general, cancer statistics often include the 5-year survival rate for a type of cancer. The 5-year survival rate tells you what percent of people live at least 5 years after the cancer is found. Percent means how many out of 100.

  • 56% of sarcomas are found as a localized sarcoma. The 5-year survival rate for people with localized sarcoma is 83%.

  • 19% of sarcomas are found in a regional stage. The 5-year survival rate for people with regional stage sarcoma is 54%.

  • 16% of sarcomas are found in a metastatic stage. The 5-year survival rate for people with a metastatic sarcoma is 16%.

It is important to note that the length of time a person lives with sarcoma depends on many factors, including the size of the tumor, where it is located, the type, how fast the tumor cells are growing and dividing, and whether it is deep (not just below the skin). If the sarcoma is diagnosed at an early stage and has not spread from where it started, treatment is often very effective and many people are cured. On the other hand, if the sarcoma has spread to other parts of the body, treatment can usually control the tumor, but it is not often curable. Learn more in the Stages and Grades section.

It is important to remember that statistics on how many people survive this type of cancer are an estimate. The estimate comes from information from thousands of people with this cancer in the United States each year. So, your own risk may be different. Doctors cannot say for sure how long anyone will live with sarcoma. Also, experts measure the survival statistics every 5 years. This means that the estimate may not show the results of better diagnosis or treatment available for less than 5 years. Learn more about understanding statistics.

Statistics adapted from the American Cancer Society's (ACS) publication, Cancer Facts & Figures 2016, and the ACS website.

The next section in this guide is Medical Illustrations. It offers drawings of body parts often affected by this disease. Or, use the menu on the left side of your screen to choose another section to continue reading this guide.

Sarcoma, Soft Tissue - Risk Factors

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2016

ON THIS PAGE: You will find out more about the factors that increase the chance of developing this type of cancer. To see other pages, use the menu.

A risk factor is anything that increases a person’s chance of developing cancer. Although risk factors often influence the development of cancer, most do not directly cause cancer. Some people with several risk factors never develop cancer, while others with no known risk factors do. However, knowing your risk factors and talking about them with your doctor may help you make more informed lifestyle and health care choices.

Most sarcomas do not have known causes. The following factors may raise a person’s risk of developing sarcoma:

  • Previous radiation therapy. People who have been treated with radiation therapy for a previous cancer have a slightly increased risk of later developing sarcoma.

  • Genetics. People with certain inherited diseases have a higher risk of sarcoma. These diseases include neurofibromatosis type 1, also known as von Recklinghausen’s disease; Gardner syndrome; Werner syndrome; tuberous sclerosis; nevoid basal cell carcinoma syndrome; Li-Fraumeni syndrome; and retinoblastoma.

  • Immune system abnormalities. People with problems with their immune system have a higher risk of several types of cancer. Sarcomas can occasionally happen in people with an abnormal immune system, whether from infections such as human immunodeficiency virus (HIV), cancers such as chronic lymphocytic leukemia, or autoimmune conditions such as lupus or psoriasis. 

  • Lymphedema. People who have surgery for other reasons may have swelling of an arm or leg as a side effect of the surgery. This is called lymphedema. For example, lymphedema is common after breast surgery, when lymph nodes are removed from the armpit area. People can also be born with lymphedema. Sarcomas, such as angiosarcoma, occasionally form in areas where lymphedema had developed.

  • Chemicals. Workplace exposure to vinyl chloride monomer, which is used in making some types of plastics, Agent Orange, or dioxin may increase the risk of sarcoma. However, most sarcoma is not known to be associated with specific environmental hazards.

The next section in this guide is Symptoms and Signs. It explains what body changes or medical problems this disease can cause. Or, use the menu to choose another section to continue reading this guide.

Sarcoma, Soft Tissue - Symptoms and Signs

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2016

ON THIS PAGE: You will find out more about body changes and other things that can signal a problem that may need medical care. To see other pages, use the menu.

People with sarcoma may experience the following symptoms or signs. Sometimes, people with sarcoma do not have any of these changes. Or, the cause of a symptom may be another medical condition that is not cancer.

STS rarely causes symptoms in the early stages. The first sign of a sarcoma in an arm, leg, or torso may be a painless lump or swelling. Most lumps are not sarcoma. The most common soft-tissue lumps are lipomas. Lipomas are made of fat cells and are not cancer. Lipomas have often been there for many years and rarely change in size.

However, it’s important to talk with your doctor about any lumps that are larger than 2 inches (5 cm), grow larger, or are painful, regardless of their location. People with sarcoma that starts in the abdomen may not have any symptoms, or they may have pain or a sense of fullness.

Because STS can develop in flexible, elastic tissues or deep spaces in the body, the tumor can often push normal tissue out of its way as it grows. Therefore, a sarcoma may grow quite large before it causes symptoms. Eventually, it may cause pain as the growing tumor begins to press against nerves and muscles.

If you are concerned about any changes you experience, please talk with your doctor. Your doctor will ask how long and how often you’ve been experiencing the symptom(s), in addition to other questions. This is to help find out the cause of the problem, called a diagnosis.

If sarcoma is diagnosed, relieving symptoms remains an important part of cancer care and treatment. This may also be called symptom management, palliative care, or supportive care. Be sure to talk with your health care team about symptoms you experience, including any new symptoms or a change in symptoms.

The next section in this guide is Diagnosis. It explains what tests may be needed to learn more about the cause of the symptoms. Or, use the menu to choose another section to continue reading this guide. 

Sarcoma, Soft Tissue - Diagnosis

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2016

ON THIS PAGE: You will find a list of common tests, procedures, and scans that doctors use to find the cause of a medical problem. To see other pages, use the menu.

Doctors use many tests to find, or diagnose, cancer. They also do tests to learn if cancer has spread to another part of the body from where it started. If this happens, it is called metastasis. For example, imaging tests can show if the cancer has spread. Imaging tests show pictures of the inside of the body. Doctors may also do tests to learn which treatments may work best.

For most types of cancer, a biopsy is the only sure way for the doctor to know whether an area of the body has cancer. In a biopsy, the doctor takes a small sample of tissue for testing in a laboratory. If a biopsy is not possible, the doctor may suggest other tests that will help make a diagnosis.

This list describes options for diagnosing this type of cancer, and not all tests listed will be used for every person. Your doctor may consider these factors when choosing a diagnostic test:

  • The type of cancer suspected

  • Your signs and symptoms

  • Your age and medical condition

  • The results of earlier medical tests

There are no standard screening tests for sarcoma. A doctor should examine any unusual or new lumps or bumps that are growing to make sure it is not cancer. Sarcomas are rare. If sarcoma is suspected, it is very important to talk with a doctor who has experience with this type of cancer.

A diagnosis of sarcoma is made by a combination of clinical examination by a doctor and imaging tests. It is confirmed by the results of a biopsy. In addition to a physical examination, some of the following tests may be used to diagnose sarcoma:

Imaging tests

Benign and cancerous tumors may look different on imaging tests, such as an x-ray. In general, a benign tumor has round, smooth, well-defined borders. A cancerous tumor usually has irregular, poorly defined edges.

  • X-ray. An x-ray is a way to create a picture of the structures inside of the body, using a small amount of radiation. X-ray is particularly useful for bone sarcomas.

  • Ultrasound. An ultrasound uses sound waves to create a picture of the internal organs.

  • Computed tomography (CT or CAT) scan. A CT scan creates a 3-dimensional picture of the inside of the body using x-rays taken from different angles. A computer then combines these images into a detailed, cross-sectional view that shows any abnormalities or tumors. A CT scan can also be used to measure the tumor’s size. Sometimes, a special dye called a contrast medium is given before the scan to provide better detail on the image. This dye can be injected into a patient’s vein and/or be a liquid the patient must drink.

  • Magnetic resonance imaging (MRI). An MRI uses magnetic fields, not x-rays, to produce detailed images of the body. MRI can also be used to measure the tumor’s size. A special dye called a contrast medium is given before the scan to create a clearer picture. This dye can be injected into a patient’s vein and/or be a liquid the patient must drink. Doctors often use MRI as a key test in deciding whether a biopsy is necessary in cases of possible STS.

  • Positron emission tomography (PET) or PET-CT scan. A PET scan is usually combined with a CT scan (see above), called a PET-CT scan. However, you may hear your doctor refer to this procedure just as a PET scan. A PET scan is a way to create pictures of organs and tissues inside the body. A small amount of a radioactive sugar substance is injected into the patient’s body. This sugar substance is taken up by cells that use the most energy. Because cancer tends to use energy actively, it absorbs more of the radioactive substance. A scanner then detects this substance to produce images of the inside of the body. This technique can be used to look at both the tumor’s structure and how much energy is used by the tumor and normal tissues. This information can be helpful in treatment planning and evaluating how well treatment is working, but it may not be performed in all cases of known or suspected STS. 

Biopsy and tissue tests

Imaging tests may suggest the diagnosis of sarcoma, but a biopsy will be needed to confirm the diagnosis and find out the subtype. It is very important for a patient to see a sarcoma specialist before any surgery or biopsy is done.

  • Biopsy. A biopsy is the removal of a small amount of tissue for examination under a microscope. Other tests can suggest that cancer is present, but only a biopsy can make a definite diagnosis. A pathologist is a doctor who specializes in interpreting laboratory tests and evaluating cells, tissues, and organs to diagnose disease.

    Because STS is uncommon, an expert pathologist should review the tissue sample to properly diagnose a sarcoma. Sometimes properly diagnosing a sarcoma requires special tests, and it is best if a specialist who sees this type of cancer every day does this.

    There are different types of biopsies. For a needle biopsy, a doctor removes a small sample of tissue from the tumor with a needle-like instrument—usually a core needle biopsy and, less often, a thin needle biopsy. This may be performed with the help of ultrasound, CT scan, or MRI to precisely guide the needle into the tumor. In an incisional biopsy, a surgeon cuts into the tumor and removes a sample of tissue. In an excisional biopsy, the surgeon removes the entire tumor, but second surgeries are often necessary after an excisional biopsy because the tumor may not have been completely removed. Because STS tumors are uncommon, it is important to have an expert pathologist review the sample of tissue removed to appropriately diagnose a sarcoma.

  • Molecular testing of the tumor. Your doctor or the pathologist looking at the sarcoma may recommend running laboratory tests on a tumor sample to identify specific genes, proteins, and other factors unique to the tumor. Results of these tests will help decide what the treatment should be, since each sarcoma can be as different from one another as breast cancer is different from colon cancer (see Treatment Options).

After diagnostic tests are done, your doctor will review all of the results with you. If the diagnosis is cancer, these results also help the doctor describe the cancer. This is called staging and grading.

The next section in this guide is Stages and Grades. It explains the system doctors use to describe the extent of the disease. Or, use the menu to choose another section to continue reading this guide.  

Sarcoma, Soft Tissue - Stages and Grades

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2016

ON THIS PAGE: You will learn about how doctors describe a cancer’s growth or spread, and how quickly it may grow. This is called the stage and grade. To see other pages, use the menu.

Staging is a way of describing where the cancer is located, if or where it has spread, and whether it is affecting other parts of the body.

Doctors use diagnostic tests to find out the cancer's stage, so staging may not be complete until all of the tests are finished. Knowing the stage helps the doctor to decide what kind of treatment is best and can help predict a patient's prognosis, which is the chance of recovery. There are different stage descriptions for different types of cancer.

There are several systems used to describe the stage of sarcoma. These systems are somewhat different from each other, but all use an overall stage to help predict a person’s prognosis.

TNM staging system

One tool that doctors use to describe the stage is the TNM system. Doctors use the results from diagnostic tests and scans to answer these questions:

  • Tumor (T): How large is the primary tumor? Where is it located?

  • Node (N): Has the tumor spread to the lymph nodes? If so, where and how many?

  • Metastasis (M): Has the cancer metastasized to other parts of the body? If so, where and how much?

The results are combined to determine the stage of cancer for each person. There are 4 stages: stages I through IV (1 through 4). The stage provides a common way of describing the cancer, so doctors can work together to plan the best treatments.

Here are more details on each part of the TNM system for sarcoma:

Tumor (T)

Using the TNM system, the "T" plus a number (0 to 2) and letter (a or b) is used to describe the size and location of the tumor.

The tumor (T) is further described by its depth. The tumor depth is described as either superficial or deep. The tumor depth is described as superficial when the tumor is above the body's superficial tissue. It is described as deep when the tumor is beneath the body's superficial tissue or has grown into the deep tissue. Specific tumor stage information is listed below.

TX: The primary tumor cannot be evaluated.

T0: There is no evidence of a primary tumor.

T1: The size of the tumor is 5 centimeters (cm) or smaller.

T1a: The tumor is superficial.

T1b: The tumor is deep.

T2: The size of the tumor is larger than 5 cm.

T2a: The tumor is superficial.

T2b: The tumor is deep.

Node (N)

The "N" in the TNM staging system stands for lymph nodes, the tiny, bean-shaped organs that help fight infection. Lymph nodes near where the cancer started are called regional lymph nodes. Lymph nodes in other parts of the body are called distant lymph nodes. Soft-tissue sarcoma usually does not spread to the lymph nodes.

NX: The regional lymph nodes cannot be evaluated.

N0 (N plus zero): The cancer has not spread to the regional lymph nodes.

N1: The cancer has spread to the regional lymph nodes.

Metastasis (M)

The "M" in the TNM system indicates whether the cancer has spread to other parts of the body, called distant metastasis.

M0 (M plus zero): The cancer has not metastasized.

M1: There is metastasis to another part of the body.

Grade (G)

Doctors also describe this type of cancer by its grade (G), which describes how much cancer cells look like healthy cells when viewed under a microscope. The doctor compares the cancerous tissue with healthy tissue. Healthy tissue usually contains many different types of cells grouped together. If the cancer looks similar to healthy tissue and contains different cell groupings, it is called differentiated or a low-grade tumor. If the cancerous tissue looks very different from healthy tissue, it is called poorly differentiated or a high-grade tumor. The cancer’s grade may help the doctor predict how quickly the cancer will spread. In general, the lower the tumor’s grade, the better the prognosis.

There are 4 grades for sarcoma: GX (the grade cannot be evaluated), G1, G2, and G3. The grades are determined based on the factors below:

  • How different the cancer cells are from normal tissue cells

  • How many tumor cells are dividing

  • How much of the tumor has cells that are dying

The lower the combined score for these 3 factors, the lower the grade. A lower grade means that the tumor is less aggressive and that a patient’s prognosis is better. This is the recommended grading system, but other systems may also be used. For instance, some doctors grade sarcomas as either “low grade” or “high grade,” particularly if the tumor has been treated before surgery.

Cancer stage grouping

Doctors assign the stage of the cancer by combining the T, N, M, and G classifications. For sarcoma, stages I and II are described in smaller groups according to the tumor's depth.

Stage IA: The tumor is 5 cm or less in size, and it is either superficial or deep. It has not spread to lymph nodes or to other parts of the body (T1a or T1b, N0, M0, GX or G1).

Stage IB: The tumor is more than 5 cm in size, and it is either superficial or deep. It has not spread to lymph nodes or to other parts of the body (T2a or T2b, N0, M0, GX or G1).

Stage IIA: The tumor is 5 cm or less in size, and it is either superficial or deep. It has not spread to lymph nodes or to other parts of the body. The grade is higher than the grade for stage IA (T1a or T1b, N0, M0, G2 or G3).

Stage IIB: The tumor is more than 5 cm in size, and it is either superficial or deep. It has not spread to lymph nodes or to other parts of the body. The grade is higher than the grade for stage IB (T2a or T2b, N0, M0, G2).

Stage III: This stage can be described by either of the following:

  • The tumor is more than 5 cm in size, and it is either superficial or deep. It has not spread to lymph nodes or to other parts of the body. The grade is higher than the grade for stage IIB (T2a or T2b, N0, M0, G3).

  • The tumor is any size, either superficial or deep, or any grade. It has spread to the regional lymph nodes but not to other parts of the body (any T, N1, M0, any G).

Stage IV: The tumor is any size, either superficial or deep, any grade, and may or may not have spread to the regional lymph nodes. It has spread to other parts of the body (any T, any N, M1, and any G).

This staging system applies to most types of soft-tissue sarcoma except Kaposi sarcoma; GIST; infantile fibrosarcoma; sarcomas that begin in the central nervous system, which includes the brain or the lining around the brain and spinal cord; and sarcomas that begin in an organ or a hollow organ, such as the bowel or urinary tract.

Recurrent: Recurrent cancer is cancer that comes back after treatment. If the cancer does return, there will be another round of tests to learn about the extent of the recurrence. These tests and scans are often similar to those done at the time of the original diagnosis.

Used with permission of the AJCC, Chicago, Illinois. The original source for this material is the AJCC Cancer Staging Manual, Seventh Edition, published by Springer-Verlag New York, www.cancerstaging.org. Please note that AJCC’s Eighth Edition (2017) has been released; related changes to the information provided above are underway. Please check back soon for updated staging definitions or talk with your doctor about whether these changes affect your diagnosis.

Information about the cancer’s stage will help the doctor recommend a specific treatment plan. The next section in this guide is Treatment Options. Or, use the menu to choose another section to continue reading this guide.

Sarcoma, Soft Tissue - Treatment Options

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2016

ON THIS PAGE: You will learn about the different ways doctors use to treat people with this type of cancer. To see other pages, use the menu.

This section tells you the treatments that are the standard of care for this type of cancer. “Standard of care” means the best treatments known. When making treatment plan decisions, patients are also encouraged to consider clinical trials as an option. A clinical trial is a research study that tests a new approach to treatment. Doctors want to learn if it is safe, effective, and possibly better than the standard treatment. Clinical trials can test a new drug, a new combination of standard treatments, or new doses of standard drugs or other treatments. Your doctor can help you consider all your treatment options. To learn more about clinical trials, see the About Clinical Trials and Latest Research sections.

Treatment overview

In cancer care, different types of doctors often work together to create a patient’s overall treatment plan that combines different types of treatments. This is called a multidisciplinary team. Cancer care teams also include a variety of other health care professionals, including physician assistants, oncology nurses, social workers, pharmacists, counselors, dietitians, and others.

Descriptions of the most common treatment options for sarcoma are listed below. Treatment options and recommendations depend on several factors, including the type, stage, and grade of sarcoma, possible side effects, and the patient’s preferences and overall health. Your care plan may also include treatment for symptoms and side effects, an important part of cancer care. Take time to learn about all of your treatment options and be sure to ask questions about things that are unclear. Also, talk about the goals of each treatment with your doctor and what you can expect while receiving the treatment. Learn more about making treatment decisions.

Surgery

Surgery is the removal of the tumor and some surrounding healthy tissue during an operation. Before surgery, it’s important to have a biopsy to confirm the diagnosis (see Diagnosis). After a biopsy, surgery is typically the first and main treatment for soft-tissue sarcoma that is small and located in only one area. Surgical oncologists and orthopedic oncologists are doctors who specialize in treating STS using surgery.

The surgeon's goal is to remove the tumor and enough normal tissue surrounding it to obtain a clean margin around the tumor. A “clean margin” means there are no tumor cells visible at the borders of the surgical specimen. This is currently the best method available to ensure that there are no tumor cells left in the area from which the tumor was removed. Small low-grade sarcomas can usually be effectively removed by surgery alone. Those that are high grade and larger than 2 inches (5 cm) are often treated with a combination of surgery and radiation therapy. Radiation therapy or chemotherapy may be used before surgery to shrink the tumor and make removal easier. They also may be used during and after surgery to destroy any remaining cancer cells. Learn more about the basics of cancer surgery.

Rarely, for patients with a very large tumor involving the major nerves and blood vessels of the arm or leg, surgical removal of the limb, called amputation, is necessary to control the tumor. This can also be necessary if the tumor grows back in the arm or leg after surgery, radiation therapy, and/or chemotherapy have been completed. It’s important to remember that the operation that results in the most useful and strongest limb may be different from the one that gives the most normal appearance. If amputation is needed, rehabilitation, including physical therapy, can help maximize physical function. Rehabilitation can also help a person cope with the social and emotional effects of losing a limb.

Talk with your surgeon about what to expect with the specific type of surgery you’ll be having, including the recovery period.

External-beam radiation therapy

Radiation therapy is the use of high-energy x-rays or other particles to destroy cancer cells. A doctor who specializes in giving radiation therapy to treat cancer is called a radiation oncologist. Since sarcoma is rare, it is very important to talk with a radiation oncologist who has experience treating sarcoma.

The most common type of radiation treatment is called external-beam radiation therapy, which is radiation given from a machine outside the body. When radiation treatment is given using implants, it is called internal radiation therapy or brachytherapy.

A radiation therapy regimen (schedule) usually consists of a specific number of treatments given over a set period of time.

Radiation therapy may be done before surgery to shrink the tumor so that it may be more easily removed. Or it may be done after surgery to remove any cancer cells left behind. Radiation treatment may make it possible to do less surgery, often preserving critical structures in the arm or leg if the sarcoma is located in one of those places.

Radiation therapy can also damage normal cells, but because it is focused around the tumor, side effects are usually limited to those areas.

Newer radiation techniques, including proton therapy (see Latest Research), may help control sarcoma and cause fewer short-term and long-term side effects.

The way external-beam radiation is used has changed over the past 20 years. It is now possible to give many small beams of radiation that turn on and off as the radiation machine rotates around the body. This is called intensity modulated radiation therapy (IMRT) and is now typically used for sarcomas. IMRT focuses more radiation on the tumor site and less on the normal tissues. As a result, there are fewer side effects than there were in the past.

Side effects from radiation therapy may include fatigue, mild skin reactions, upset stomach, and loose bowel movements. In the short term, radiation can cause injury to the skin that looks like a sunburn and is usually treated with creams that keep the skin soft and helps relieve discomfort. Radiation therapy can also affect wound healing. In the long term, radiation can cause scarring that limits the function of an arm or a leg. In rare cases, radiation can cause a sarcoma or other cancer. In the unlikely event that this happens, it takes an average of about 10 years after radiation for a second cancer to develop. Each person is encouraged to talk with his or her doctor about the possible risks and benefits of a specific treatment such as radiation therapy. Most side effects go away soon after treatment is finished.

Brachytherapy

Brachytherapy is the insertion of radiation seeds through thin tubes called catheters directly into the affected area of the body. Brachytherapy usually requires specialized skills and special training. It is only used in certain hospitals. The setup for brachytherapy usually starts in the operating room, where the catheters are placed. Tiny seeds of radioactive material are then slid into the tubes on wires for a period of time. At the end of the treatment, which lasts several days, both the radiation seeds and catheters are removed. People usually have to stay in the hospital to make sure the seeds do not move and incorrectly irradiate an area of the body.

In some hospitals, people can receive brachytherapy as an outpatient. Instead of keeping the radiation seeds in place for a week or so, high-dose radiation seeds can be placed in the catheters using specialized equipment. The seeds are placed near the treatment site for about 15 minutes and then removed. This is done once or twice a day. This process may allow some patients to go home between radiation treatments.

Intraoperative radiation

In some hospitals, part of the planned radiation therapy can be given during surgery. This approach can decrease the need to irradiate normal tissue with external-beam radiation or with brachytherapy.

Learn more about radiation therapy.

Chemotherapy

Chemotherapy is the use of drugs to destroy cancer cells, usually by stopping the cancer’s ability to grow and divide. Chemotherapy is given by a medical oncologist, a doctor who specializes in treating cancer with medication.

Systemic chemotherapy gets into the bloodstream to reach cancer cells throughout the body. Common ways to give chemotherapy include an intravenous (IV) tube placed into a vein using a needle or in a pill or capsule that is swallowed (orally).

A chemotherapy regimen (schedule) usually consists of a specific number of cycles given over a set period of time. A patient may receive 1 drug at a time or combinations of different drugs at the same time. Chemotherapy for sarcoma can usually be given as an outpatient treatment. 

Different drugs are used to treat different types and subtypes of sarcoma. Some types of chemotherapy that might be used alone or in combination for STS include:

  • Dacarbazine (DTIC-Dome)

  • Docetaxel (Taxotere)

  • Doxorubicin (Adriamycin)

  • Epirubicin (Ellence)

  • Gemcitabine (Gemzar)

  • Ifosfamide (Cyfos, Ifex, Ifosfamidum)

  • Liposomal doxorubicin (multiple brands)

  • Temozolomide (Methazolastone, Temodar)

  • Trabectedin (Yondelis)

  • Eribulin (Halaven)

In some cases, a specific drug or drugs are used for a particular type of sarcoma. Since there are over 50 types of STS, it is not possible to list them all here. Here are 2 examples:

For rhabdomyosarcoma and Ewing sarcoma of soft tissue or bone:

  • Cyclophosphamide (Cytoxan, Clafen, Neosar)

  • Dactinomycin (Cosmegen)

  • Etoposide (VePesid, Toposar)

  • Irinotecan (Camptosar)

  • Topotecan (Hycamtin, Brakiva)

  • Vincristine (Oncovin, Vincasar)

For angiosarcoma:

  • Bevacizumab (Avastin)

  • Docetaxel (Docefrez, Taxotere)

  • Paclitaxel (Taxol)

  • Pazopanib (Votrient) or related oral medicines

Chemotherapy is often used when a sarcoma has already spread. It may be given alone or in combination with surgery, radiation therapy, or both.

For example, certain types of sarcoma may be treated with chemotherapy before surgery to make the tumor easier to remove. Chemotherapy given before surgery may be called by different names, including preoperative chemotherapy, neoadjuvant chemotherapy, or induction chemotherapy.

If a patient has not received chemotherapy before surgery, chemotherapy may be given to destroy any microscopic tumor cells that remain after a patient has recovered from surgery. Chemotherapy given after surgery is called adjuvant chemotherapy or postoperative chemotherapy.

The side effects of chemotherapy depend on the individual and the dose used, but they can include fatigue, risk of infection, nausea and vomiting, hair loss, loss of appetite, and diarrhea. These side effects usually go away once treatment is finished.

Learn more about the basics of chemotherapy and preparing for treatment. The medications used to treat cancer are continually being evaluated. Talking with your doctor is often the best way to learn about the medications prescribed for you, their purpose, and their potential side effects or interactions with other medications. Learn more about your prescriptions by using searchable drug databases.

Targeted therapy (updated 10/2016)

Targeted therapy is a treatment that targets the cancer’s specific genes, proteins, or the tissue environment that contributes to cancer growth and survival, usually by blocking the action of proteins in cells called kinases. This type of treatment blocks the growth and spread of cancer cells while limiting damage to healthy cells.

Recent studies show that not all tumors have the same targets. To find the most effective treatment, your doctor may run tests to identify the genes, proteins, and other factors in your tumor. This helps doctors better match each patient with the most effective treatment whenever possible. In addition, many research studies are taking place now to find out more about specific molecular targets and new treatments directed at them. Learn more about the basics of targeted treatments.

In October 2016, the U.S. Food and Drug Administration (FDA) gave accelerated approval for the use of olaratumab (Lartruvo) in combination with doxorubicin as the first treatment for people with STS who cannot be cured with radiation or surgery. Doxorubicin is an anthracycline chemotherapy drug, so patients also must have a type of STS that can be treated with doxorubicin. Until now, doxorubicin and ifosfamide have been used together for this situation. As a result, doxorubicin and olaratumab represents the first new combination treatment for initial therapy of advanced STS in over 20 years.

Imatinib (Gleevec) is a type of targeted therapy called a tyrosine kinase inhibitor. It is the standard first-line treatment for GIST worldwide. Two other targeted drugs, sunitinib (Sutent) and regorafenib (Stivarga), are approved for the treatment of GIST when imatinib doesn’t work. Imatinib has also been approved for use for patients with GIST after initial surgery to try to prevent recurrence in patients who might have a high risk of recurrence. In addition, imatinib is approved for the treatment of patients with advanced-stage dermatofibrosarcoma protuberans (DFSP).

Getting care for symptoms and side effects

Cancer and its treatment often cause side effects. In addition to treatment to slow, stop, or eliminate the cancer, an important part of cancer care is relieving a person’s symptoms and side effects. This approach is called palliative or supportive care, and it includes supporting the patient with his or her physical, emotional, and social needs.

Palliative care is any treatment that focuses on reducing symptoms, improving quality of life, and supporting patients and their families. Any person, regardless of age or type and stage of cancer, may receive palliative care. It works best when palliative care is started as early as needed in the cancer treatment process. People often receive treatment for the cancer and treatment to ease side effects at the same time. In fact, patients who receive both often have less severe symptoms, better quality of life, and report they are more satisfied with treatment.

Palliative treatments vary widely and often include medication, nutritional changes, relaxation techniques, emotional support, and other therapies. You may also receive palliative treatments similar to those meant to eliminate the cancer, such as chemotherapy, surgery, or radiation therapy. Talk with your doctor about the goals of each treatment in the treatment plan.

Before treatment begins, talk with your health care team about the possible side effects of your specific treatment plan and palliative care options. And during and after treatment, be sure to tell your doctor or another health care team member if you are experiencing a problem, so it can be addressed as quickly as possible. Learn more about palliative care.

Metastatic sarcoma

If cancer spreads to another part in the body from where it started, doctors call it metastatic cancer. If this happens, it is a good idea to talk with doctors who have experience in treating it. Doctors can have different opinions about the best standard treatment plan. Also, clinical trials might be an option. Learn more about getting a second opinion before starting treatment, so you are comfortable with your chosen treatment plan.

Your treatment plan may include a combination of surgery alone, surgery plus radiation therapy, surgery plus chemotherapy, or chemotherapy alone. Rarely, when the tumor is not growing, a “watch and wait” approach, also called active surveillance, may be used. This means that the patient is closely monitored and active treatment begins only if the tumor begins to grow. Palliative care will also be important to help relieve symptoms and side effects.

For most patients, a diagnosis of metastatic cancer is very stressful and, at times, difficult to bear. Patients and their families are encouraged to talk about how they are feeling with doctors, nurses, social workers, or other members of the health care team. It may also be helpful to talk with other patients, possibly through a support group.

Remission and the chance of recurrence

A remission is when cancer cannot be detected in the body and there are no symptoms. This may also be called having “no evidence of disease” or NED. 

A remission may be temporary or permanent. This uncertainty causes many people to worry that the cancer will come back. While many remissions are permanent, it’s important to talk with your doctor about the possibility of the cancer returning. Understanding your risk of recurrence and the treatment options may help you feel more prepared if the cancer does return. Learn more about coping with the fear of recurrence.

If the cancer does return after the original treatment, it is called recurrent cancer. It may come back in the same place (called a local recurrence), nearby (regional recurrence), or in another place (distant recurrence). If the sarcoma was originally in the arm or leg, the recurrence most commonly occurs in the lungs. Patients treated for sarcoma of the abdomen or torso are at risk for local, regional, or distant recurrence.

When this occurs, a cycle of testing will begin again to learn as much as possible about the recurrence. After testing is done, you and your doctor will talk about your treatment options. Often the treatment plan will include the treatments described above, such as surgery, chemotherapy, and radiation therapy, but they may be used in a different combination or given at a different pace. Your doctor may also suggest clinical trials that are studying new ways to treat this type of recurrent cancer. Whichever treatment plan you choose, palliative care will be important for relieving symptoms and side effects.

Local recurrences often can be successfully treated with additional surgery plus radiation therapy, but the risks of side effects from these treatments tends to increase. Treatment for a distant recurrence is most successful for patients who have a small number of tumors that have spread to the lung that can be completely removed surgically, destroyed with radiofrequency ablation, or destroyed with high-dose radiotherapy (also known as stereotactic body radiotherapy, SBRT, or gamma-knife radiotherapy):

  • Radiofrequency ablation is a technique where a needle is inserted into the tumor to destroy the cancer with an electrical current. This burns the tumor from the inside out.

  • SBRT is the use of pinpointed radiation at very high doses over a few treatments to attack a specific small area of tumor. This is a useful technique because it uses fewer treatments and can be more precise than external-beam radiation therapy.

People with recurrent cancer often experience emotions such as disbelief or fear. Patients are encouraged to talk with their health care team about these feelings and ask about support services to help them cope. Learn more about dealing with cancer recurrence.

If treatment fails

Recovery from cancer is not always possible. If the cancer cannot be cured, it can often still be controlled, at least for a period of time. It is important to understand that patients can live with cancer in their body as long as it does not affect the function of a major organ. Therefore, the goal of treatment is to control the cancer and preserve organ function.

If the cancer can no longer be controlled, it is called end-stage or terminal cancer. This diagnosis is stressful, and advanced cancer is difficult to discuss for many people. However, it is important to have open and honest conversations with your doctor and health care team to express your feelings, preferences, and concerns. The health care team is there to help, and many team members have special skills, experience, and knowledge to support patients and their families. Making sure a person is physically comfortable and free from pain is extremely important.

Patients who have advanced cancer and who are expected to live fewer than 6 months may want to consider a type of palliative care called hospice care. Hospice care is designed to provide the best possible quality of life for people who are near the end of life. You and your family are encouraged to think about where you would be most comfortable: at home, in the hospital, or in a hospice environment. Nursing care and special equipment can make staying at home a workable alternative for many families. Learn more about advanced cancer care planning.

After the death of a loved one, many people need support to help cope with the loss. Learn more about grief and loss.

The next section in this guide is About Clinical Trials. It offers more information about research studies that are focused on finding better ways to care for people with cancer. Or, use the menu to choose another section to continue reading this guide.  

Sarcoma, Soft Tissue - About Clinical Trials

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2016

ON THIS PAGE: You will learn more about clinical trials, which are the main way that new medical approaches are tested to see how well they work. To see other pages, use the menu.

What are clinical trials?

Doctors and scientists are always looking for better ways to care for patients with sarcoma. To make scientific advances, doctors create research studies involving volunteers, called clinical trials. In fact, every drug that is now approved by the U.S. Food and Drug Administration (FDA) was tested in clinical trials.

Many clinical trials focus on new treatments. Researchers want to learn if a new treatment is safe, effective, and possibly better than the treatment doctors use now. These types of studies evaluate new drugs, different combinations of existing treatments, new approaches to radiation therapy or surgery, and new methods of treatment. Patients who participate in clinical trials can be some of the first to get a treatment before it is available to the public. However, there is no guarantee that the new treatment will be safe, effective, or better than what doctors use now.

Some clinical trials study new ways to relieve symptoms and side effects during treatment. Others study ways to manage the late effects that may happen a long time after treatment. Talk with your doctor about clinical trials for symptoms and side effects. There are also clinical trials studying ways to prevent cancer.

Deciding to join a clinical trial

Patients decide to participate in clinical trials for many reasons. For some patients, a clinical trial is the best treatment option available. Because standard treatments are not perfect, patients are often willing to face the added uncertainty of a clinical trial in the hope of a better result. Other patients volunteer for clinical trials because they know that these studies are the only way to make progress in treating sarcoma. Even if they do not benefit directly from the clinical trial, their participation may benefit future patients with sarcoma.

Sometimes people have concerns that, in a clinical trial, they may receive no treatment by being given a placebo or a “sugar pill.” However, placebos are usually combined with standard treatment in most cancer clinical trials. When a placebo is used in a study, it is done with the full knowledge of the participants. Find out more about placebos in cancer clinical trials

Patient safety and informed consent

To join a clinical trial, patients must participate in a process known as informed consent. During informed consent, the doctor should list all of the patient’s options so that the person understands how the new treatment differs from the standard treatment. The doctor must also list all of the risks of the new treatment, which may or may not be different from the risks of standard treatment. Finally, the doctor must explain what will be required of each patient in order to participate in the clinical trial, including the number of doctor visits, tests, and the schedule of treatment.

Patients who participate in a clinical trial may stop participating at any time for any personal or medical reason. This may include that the new treatment is not working or there are serious side effects. Clinical trials are also closely monitored by experts who watch for any problems with each study. It is important that patients participating in a clinical trial talk with their doctor and researchers about who will be providing their treatment and care during the clinical trial, after the clinical trial ends, and/or if the patient chooses to leave the clinical trial before it ends. 

Finding a clinical trial

Research through clinical trials is ongoing for all types of cancer. For specific topics being studied for sarcoma, learn more in the Latest Research section.

Cancer.Net offers a lot of information about cancer clinical trials in other areas of the website, including a complete section on clinical trials and places to search for clinical trials for a specific type of cancer.

In addition, this website offers free access to a video-based educational program about cancer clinical trials, located outside of this guide.

The next section in this guide is Latest Research. It explains areas of scientific research currently going on for this type of cancer. Or, use the menu to choose another section to continue reading this guide.  

Sarcoma, Soft Tissue - Latest Research

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2016

ON THIS PAGE: You will read about the scientific research being done now to learn more about this type of cancer and how to treat it. To see other pages, use the menu.

Doctors are working to learn more about sarcoma, ways to prevent it, how to best treat it, and how to provide the best care to people diagnosed with this disease. The following areas of research may include new options for patients through clinical trials. Always talk with your doctor about the diagnostic and treatment options best for you.

  • Immunotherapy. Immunotherapy comes in many forms. There has been much recent excitement about immune checkpoint inhibitors. These drugs are targeted monoclonal antibodies (proteins) that non-specifically turn on immune responses in the body by taking the brakes off the immune system. The molecules that are blocked have names such as CTLA4, PD1, OX40, LAG3, and TIM3. They have proved helpful in many cancers and in research studies about sarcomas.

    Chimeric antigen receptor (CAR) T-cell therapy uses white blood cells from a patient’s blood to destroy cancer cells. The patient’s cells are removed the patient and then changed in a laboratory so they have specific proteins called receptors. These receptors allow those T-cells to recognize the cancer cells. The changed T-cells are grown in large numbers in the laboratory and returned to the patient’s body. Once there, they seek out and destroy cancer cells. This technique shows the most promise when there is a known target on the sarcoma, such as in synovial sarcoma and myxoid-round cell liposarcoma. Clinical trials are underway to investigate this exciting but complex form of immunotherapy.

    Vaccines against specific sarcoma proteins or other molecules are also being studied, often in addition to immune checkpoint inhibitors. 

  • Proton beam radiation therapy. Proton therapy is a type of external-beam radiation treatment that uses protons rather than x-rays. At high energy, protons can destroy cancer cells. Learn more about proton therapy. Radiation treatment using heavier charged particles, known as carbon ion radiation therapy, is being studied for the treatment of sarcomas in Japan and Germany.

  • Improved drug delivery. Some chemotherapy drugs are incorporated into fat molecules called liposomes to improve the absorption and distribution of the drug in the patient’s body. Other new ways to get a chemotherapy drug into a cancer cell are being studied. For example, chemotherapy drugs can be attached to proteins so the chemotherapy drugs can enter into the cancer cells. In some cases, these proteins are antibodies that aim at a specific marker on a cancer cell, so the chemotherapy is delivered only to cancer cells and not to normal cells.

  • New drugs. New medications are being developed and tested that may be effective in treating some subtypes of STS. Learn more about the process of drug development and approval.

  • Targeted therapy. As explained in the Treatment Options section, several targeted therapies have been approved to treat specific types of sarcoma recently. This is an active area of research for sarcoma. Currently, researchers are identifying new kinase inhibitors and evaluating the order that the drugs should be used in a patient’s treatment plan.

  • Targeted oncogene treatments. Drugs are being researched that may block 1 or more of the proteins found in tumor cells that help the tumor grow and spread.

  • Tumor genetics. Researchers are learning that some sarcomas have unique genetic “fingerprints.” Understanding these fingerprints may help doctors determine better treatments and possibly better predict a patient’s prognosis. A number of cancer centers and companies now offer genetic tests of cancers to determine whether people with sarcoma might benefit from newer treatments.

  • Palliative care. Clinical trials are underway to find better ways of reducing symptoms and side effects of current sarcoma treatments to improve patients’ comfort and quality of life.

Looking for More About the Latest Research?

If you would like additional information about the latest areas of research regarding soft-tissue sarcoma, explore these related items that take you outside of this guide:

The next section in this guide is Coping with Treatment. It offers some guidance in how to cope with the physical, emotional, and social changes that cancer and its treatment can bring. Or, use the menu to choose another section to continue reading this guide.  

Sarcoma, Soft Tissue - Coping with Treatment

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2016

ON THIS PAGE: You will learn more about coping with the physical, emotional, social, and financial effects of cancer and its treatment. This page includes several links outside of this guide to other sections of this website. To see other pages, use the menu.

Every cancer treatment can cause side effects or changes to your body and how you feel. For many reasons, people don’t experience the same side effects even when given the same treatment for the same type of cancer. This can make it hard to predict how you will feel during treatment.

As you prepare to start cancer treatment, it is normal to fear treatment-related side effects. It may help to know that your health care team will work to prevent and relieve side effects. Doctors call this part of cancer treatment “palliative care.” It is an important part of your treatment plan, regardless of your age or the stage of disease.

Coping with physical side effects

Common physical side effects from each treatment option for sarcoma are described within the Treatment Options section. Learn more about side effects of cancer and its treatment, along with ways to prevent or control them. Changes to your physical health depend on several factors, including the cancer’s stage, the length and dose of treatment, and your general health.

Sometimes, physical side effects can last after treatment ends. Doctors call these long-term side effects. They call side effects that occur months or years after treatment late effects. Treating long-term side effects and late effects is an important part of survivorship care. Learn more by reading the Follow-up Care section of this guide or talking with your doctor.

Coping with emotional and social effects

You can have emotional and social effects as well as physical effects after a cancer diagnosis. This may include dealing with difficult emotions, such as anxiety or anger, or managing your stress level. Sometimes, patients have problems expressing how they feel to their loved ones, or people don’t know what to say in return.

Patients and their families are encouraged to share their feelings with a member of their health care team. You can also find coping strategies for emotional and social effects in a separate section of this website. This section includes many resources for finding support and information to meet your needs.

Coping with financial effects

Cancer treatment can be expensive. It is often a big source of stress and anxiety for people with cancer and their families. In addition to treatment costs, many people find they have extra, unplanned expenses related to their care. For some people, the high cost stops them from following or completing their cancer treatment plan. This can put their health at risk and may lead to higher costs in the future. Learn more about managing financial considerations, in a separate part of this website.

Caring for a loved one with cancer

Family members and friends often play an important role in taking care of a person with sarcoma. This is called being a caregiver. Caregivers can provide physical, practical, and emotional support to the patient, even if they live far away.

Caregivers may have a range of responsibilities on a daily or as-needed basis. Below are some of the responsibilities caregivers take care of:

  • Providing support and encouragement

  • Giving medications

  • Helping manage symptoms and side effects

  • Coordinating medical appointments

  • Providing a ride to appointments

  • Assisting with meals

  • Helping with household chores

  • Handling insurance and billing issues

Learn more about caregiving.

Talking with your health care team about side effects

Before starting treatment, talk with your doctor about possible side effects. Ask:

  • Which side effects are most likely?

  • When are they are likely to happen?

  • What can we do to prevent or relieve them?

Be sure to tell your health care team about any side effects that happen during treatment and afterward, too. Tell them even if you don’t think the side effects are serious. This discussion should include physical, emotional, and social effects of cancer.

Also, ask how much care you may need at home and with daily tasks during and after treatment. This can help you make a caregiving plan.

The next section in this guide is Follow-up Care. It explains the importance of checkups after cancer treatment is finished. Or, use the menu on the side of your screen to choose another section to continue reading this guide.  

Sarcoma, Soft Tissue - Follow-Up Care

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2016

ON THIS PAGE: You will read about your medical care after cancer treatment is completed, and why this follow-up care is important. To see other pages, use the menu.

Care for people diagnosed with cancer doesn’t end when active treatment has finished. Your health care team will continue to check to make sure the cancer has not returned, manage any side effects, and monitor your overall health. This is called follow-up care.

Your follow-up care may include regular physical examinations, medical tests, or both. Doctors want to keep track of your recovery in the months and years ahead. For patients treated for sarcoma in an arm or leg, a rehabilitation program after surgery or radiation therapy can help the patient regain or maintain limb function. Range-of-motion exercises, strengthening exercises, and a program to reduce lymphedema may be recommended. A rehabilitation medicine specialist can help patients receive the most appropriate rehabilitation after treatment. The majority of patients with a sarcoma in an arm or leg can be successfully treated and maintain good limb function. However, when treatment included amputation, services that provide artificial limbs, called prosthetics, and additional mental health support can help manage the adjustment to life following the loss of a limb. Learn more about rehabilitation.

Learn more about the importance of follow-up care.

Watching for recurrence

One goal of follow-up care is to check for a recurrence. Cancer recurs because small areas of cancer cells may remain undetected in the body. Over time, these cells may increase in number until they show up on test results or cause signs or symptoms. During follow-up care, a doctor familiar with your medical history can give you personalized information about your risk of recurrence. Your doctor will also ask specific questions about your health. Some people may have blood tests or imaging tests as part of regular follow-up care, but testing recommendations depend on several factors including the type and stage of cancer originally diagnosed and the types of treatment given.

Managing long-term and late side effects

Most people expect to experience side effects when receiving treatment. However, it is often surprising to survivors that some side effects may linger beyond the treatment period. These are called long-term side effects. In addition, other side effects called late effects may develop months or even years afterwards. Long-term and late effects can include both physical and emotional changes.

Talk with your doctor about your risk of developing such side effects based on the type of cancer, your individual treatment plan, and your overall health. If you had a treatment known to cause specific late effects, you may also have certain physical examinations, scans, or blood tests to help find and manage them.

Keeping personal health records

You and your doctor should work together to develop a personalized follow-up care plan. Be sure to ask about any concerns you have about your future physical or emotional health. ASCO offers forms to help create a treatment summary to keep track of the cancer treatment you received and develop a survivorship care plan once treatment is completed.

This is also a good time to decide who will lead your follow-up care. Some survivors continue to see their oncologist, while others transition back to the general care of their family doctor or another health care professional. This decision depends on several factors, including the type and stage of cancer, side effects, health insurance rules, and your personal preferences.

If a doctor who was not directly involved in your cancer care will lead your follow-up care, be sure to share your cancer treatment summary and survivorship care plan forms with him or her, as well as all future health care providers. Details about your cancer treatment are very valuable to the health care professionals who will care for you throughout your lifetime.

The next section in this guide is Survivorship. It describes how to cope with challenges in everyday life after a cancer diagnosis. Or, use the menu to choose another section to continue reading this guide.  

Sarcoma, Soft Tissue - Survivorship

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2016

ON THIS PAGE: You will read about how to cope with challenges in everyday life after a cancer diagnosis. To see other pages, use the menu on the side of your screen.

What is survivorship?

The word “survivorship” means different things to different people. Common definitions include:

  • Having no signs of cancer after finishing treatment.

  • Living with, through, and beyond cancer. According to this definition, cancer survivorship begins at diagnosis and includes people who continue to have treatment over the long term, to either reduce the risk of recurrence or to manage chronic disease.

Survivorship is one of the most complicated parts of having cancer. This is because it is different for everyone.

Survivors may experience a mixture of strong feelings, including joy, concern, relief, guilt, and fear. Some people say they appreciate life more after a cancer diagnosis and have gained a greater acceptance of themselves. Others become very anxious about their health and uncertain of how to cope with everyday life.

Survivors may feel some stress when frequent visits to the health care team end following treatment. Often, relationships built with the cancer care team provide a sense of security during treatment, and people miss this source of support. This may be especially true as new worries and challenges surface over time, such as any late effects of treatment, emotional challenges including fear of recurrence, sexuality and fertility concerns, and financial and workplace issues.

Every survivor has individual concerns and challenges. With any challenge, a good first step is being able to recognize your fears and talk about them. Effective coping requires:

  • Understanding the challenge you are facing,

  • Thinking through solutions,

  • Asking for and allowing the support of others, and

  • Feeling comfortable with the course of action you choose.

Many survivors find it helpful to join an in-person support group or an online community of survivors. This allows you to talk with people who have had similar first-hand experiences. Other options for finding support include talking with a friend or member of your health care team, individual counseling, or asking for assistance at the learning resource center of the center where you received treatment.

People with a family history of cancer

Some people with sarcoma have strong family histories of cancer in other relatives. If other relatives in your family have had cancer, then it may be advisable to meet with a clinical genetic expert. Clinical genetics experts can discuss what your diagnosis may mean for other people in your family who do not have cancer. Sometimes, special blood-test screening can determine who is at risk to develop cancer in a family.

Changing role of caregivers

Family members and friends may also go through periods of transition. A caregiver plays a very important role in supporting a person diagnosed with cancer, providing physical, emotional, and practical care on a daily or as-needed basis. Many caregivers become focused on providing this support, especially if the treatment period lasts for many months or longer.

However, as treatment is completed, the caregiver's role often changes. Eventually, the need for caregiving related to the cancer diagnosis will become much less or come to an end. Caregivers can learn more about adjusting to life after caregiving in this article.

A new perspective on your health

For many people, survivorship serves as a strong motivator to make positive lifestyle changes.

People recovering from sarcoma are encouraged to follow established guidelines for good health, such as not smoking, limiting alcohol, eating well, and managing stress. Regular physical activity can help rebuild your strength and energy level. Your health care team can help you create an appropriate exercise plan based upon your needs, physical abilities, and fitness level. Learn more about making healthy lifestyle choices.

In addition, it is important to have recommended medical check-ups and tests (see Follow-up Care) to take care of your health. Cancer rehabilitation may also be recommended, and this could mean any of a wide range of services such as physical therapy, career counseling, pain management, nutritional planning, and/or emotional counseling. The goal of rehabilitation is to help people regain control over many aspects of their lives and remain as independent and productive as possible.

Talk with your doctor to develop a survivorship care plan that is best for your needs.

Looking for More Survivorship Resources?

For more information about cancer survivorship, explore these related items. Please note that these links will take you to other sections of Cancer.Net:

  • ASCO Answers Cancer Survivorship Guide: Get this 44-page booklet that helps people transition into life after treatment. It includes blank treatment summary and survivorship care plan forms. The booklet is available as a PDF, so it is easy to print out.

  • Cancer.Net Patient Education Video: View a short video led by an ASCO expert that provides information about what comes next after finishing treatment.

  • Survivorship Resources: Cancer.Net offers an entire area of this website with resources to help survivors, including for survivors in different age groups.

The next section offers Questions to Ask the Doctor to help start conversations with your cancer care team. Or, use the menu to choose another section to continue reading this guide.  

Sarcoma, Soft Tissue - Questions to Ask the Doctor

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2016

ON THIS PAGE: You will find some questions to ask your doctor or other members of your health care team, to help you better understand your diagnosis, treatment plan, and overall care. To see other pages, use the menu.

Talking often with the doctor is important to make informed decisions about your health care. These suggested questions are a starting point to help you learn more about your cancer care and treatment. You are also encouraged to ask additional questions that are important to you. You may want to print this list and bring it to your next appointment, or download Cancer.Net’s free mobile app for an e-list and other interactive tools to manage your care.

Questions to ask after getting a diagnosis

  • What type of sarcoma do I have?

  • Has this diagnosis been reviewed by a pathologist who is experienced in the diagnosis and classification of sarcoma?

  • Can you explain my pathology report (laboratory test results) to me?

  • What stage and grade is the sarcoma? What does this mean?

  • What does my diagnosis mean?

  • Where is the tumor located?

  • Should I see a sarcoma specialist?

  • Was my case discussed in a multidisciplinary conference? What does this mean?

Questions to ask about choosing a treatment and managing side effects

  • What are my treatment options?

  • What clinical trials are available for me? Where are they located, and how do I find out more about them?

  • What treatment plan do you recommend? Why?

  • What is the goal of each treatment? Is it to eliminate the cancer, help me feel better, or both?

  • What are the possible side effects of this treatment, both in the short term and the long term?

  • Who will be part of my health care team, and what does each member do?

  • Who will be leading my overall treatment?

  • How will this treatment affect my daily life? Will I be able to work, exercise, and perform my usual activities?

  • Could this treatment affect my sex life? If so, how and for how long?

  • Could this treatment affect my ability to become pregnant or have children? If so, should I talk with a fertility specialist before cancer treatment begins?

  • If I’m worried about managing the costs of cancer care, who can help me?

  • What support services are available to me? To my family?

  • Whom should I call for questions or problems?

  • Is there anything else I should be asking?

Questions to ask about having surgery

  • Should I have a biopsy before surgery?

  • What will happen during this surgery?

  • How long will the operation take?

  • Will the surgery be performed in en-bloc resection? What does this mean?

  • How much experience does this surgeon have with sarcoma? How many sarcoma operations has he or she done in the past year?

  • What are the possible side effects of my surgery, both in the short term and long term?

  • How long will I be in the hospital?

  • Does the stage of cancer affect the decision for surgery? How?

  • Do I need chemotherapy and/or radiation before the surgery? After the surgery?

  • Will I need rehabilitation after the surgery?

  • If surgery is on an arm or leg, what will my arm/leg look like after surgery?

Questions to ask about having radiation therapy

  • What type of radiation therapy is recommended?

  • How experienced is the radiation oncologist with sarcoma? How many people with sarcoma has he or she treated in the past year?

  • How many treatments will I need, and how long will each one take?

  • What side effects can I expect from this treatment?

  • What can be done to prevent or to treat the side effects?

Questions to ask about having chemotherapy or targeted therapy

  • What type of treatment is recommended?

  • What is the goal of this treatment?

  • How experienced is the medical oncologist with sarcoma? How many people with sarcoma has he or she treated in the past year?

  • Are other chemotherapy or targeted treatments available?

  • Should I consider a clinical trial?

  • How many treatments will I need? How long will each take?

  • What side effects can I expect during treatment?

  • What are the possible long-term effects of having this treatment?

  • What can be done to relieve side effects?

Questions to ask about planning follow-up care

  • What is the chance that the cancer will come back? Should I watch for specific signs or symptoms?

  • What long-term side effects or late effects are possible based on the cancer treatment I received?

  • What follow-up tests will I need, and how often will I need them?

  • How do I get a treatment summary and survivorship care plan to keep in my personal records?

  • Who will be leading my follow-up care?

  • What survivorship support services are available to me? To my family?

The next section in this guide is Additional Resources. It offers some more resources on this website beyond this guide that may be helpful to you. Or, use the menu to choose another section to continue reading this guide. 

Sarcoma, Soft Tissue - Additional Resources

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2016

ON THIS PAGE: You will find some helpful links to other areas of Cancer.Net that provide information about cancer care and treatment. This is the final page of Cancer.Net’s Guide to Soft-Tissue Sarcoma. To go back and review other pages, use the menu.

Cancer.Net includes many other sections about the medical and emotional aspects of cancer, both for the person diagnosed and their family members and friends. This website is meant to be a resource for you and your loved ones from the time of diagnosis, through treatment, and beyond.

Beyond this guide, here are a few links to help you explore other parts of Cancer.Net:

This is the end of Cancer.Net’s Guide to Soft-Tissue Sarcoma. Use the menu to select another section to continue reading this guide.