What is Soft Tissue Sarcoma? Symptoms, Causes, & Treatment

Soft tissue sarcoma is a rare type of cancer that develops in the soft tissues of your body. These tissues include muscles, tendons, fat, blood vessels, nerves, and the tissue around your joints. While the name might sound intimidating, understanding this condition can help you feel more informed and prepared if you or someone you care about faces this diagnosis.

This type of cancer can occur anywhere in your body, but it most commonly appears in your arms, legs, chest, or abdomen. Though soft tissue sarcomas are uncommon, making up less than 1% of all adult cancers, they deserve attention because early detection and treatment can make a significant difference in outcomes.

What is Soft Tissue Sarcoma?

Soft tissue sarcoma is a group of cancers that begin in the connective tissues of your body. Think of these tissues as the framework that holds everything together, much like the scaffolding that supports a building under construction.

These cancers develop when cells in soft tissues begin to grow and divide uncontrollably. Unlike other cancers that might be named after the organ they affect, sarcomas are classified by the type of tissue where they start growing.

There are more than 50 different types of soft tissue sarcomas, each named after the specific tissue type involved. Some grow slowly over months or years, while others can develop more quickly. The good news is that many soft tissue sarcomas can be successfully treated, especially when caught early.

What are the Types of Soft Tissue Sarcoma?

Soft tissue sarcomas are grouped based on the type of tissue where they begin. Understanding these different types can help you better communicate with your healthcare team about your specific situation.

The most common types include liposarcoma, which starts in fat tissue, and leiomyosarcoma, which develops in smooth muscle. You might also encounter undifferentiated pleomorphic sarcoma, formerly called malignant fibrous histiocytoma, which can occur in various soft tissues.

Less common types include synovial sarcoma, which typically affects younger adults and can occur near joints, and angiosarcoma, which develops in blood vessels or lymph vessels. Rhabdomyosarcoma affects skeletal muscle and is more common in children, though it can occur in adults too.

Some rare types include epithelioid sarcoma, clear cell sarcoma, and alveolar soft part sarcoma. Each type has its own characteristics, growth patterns, and treatment approaches. Your doctor will determine the exact type through specialized testing, which helps guide the most appropriate treatment plan for your situation.

What are the Symptoms of Soft Tissue Sarcoma?

The symptoms of soft tissue sarcoma can be subtle at first, which is why many people don't notice them right away. The most common early sign is a painless lump or swelling that you can feel under your skin.

Here are the main symptoms to be aware of, keeping in mind that having these symptoms doesn't necessarily mean you have sarcoma:

• A growing lump or mass that you can feel, especially if it's larger than a golf ball
• Pain or soreness in the area, though this often doesn't occur until the tumor grows larger
• Limited movement in the affected area, particularly if the tumor is near a joint
• Numbness or tingling if the tumor presses on nerves
• Swelling in an arm or leg
• Abdominal pain or feeling full quickly when eating (for tumors in the abdomen)

It's important to know that many soft tissue sarcomas don't cause pain in their early stages. This can make them easy to overlook or dismiss as harmless lumps. However, any new lump that grows or changes should be evaluated by a healthcare provider.

For sarcomas in the abdomen, symptoms might include persistent abdominal pain, a feeling of fullness, or changes in bowel habits. These internal tumors can grow quite large before causing noticeable symptoms, which is why abdominal sarcomas are sometimes discovered during routine imaging for other reasons.

What Causes Soft Tissue Sarcoma?

The exact cause of soft tissue sarcoma isn't known in most cases, and this uncertainty can feel frustrating. However, researchers have identified several factors that may increase the risk of developing these cancers.

Most soft tissue sarcomas appear to develop randomly, without any clear trigger or preventable cause. The cancer begins when normal cells in soft tissue undergo genetic changes that cause them to grow uncontrollably. These genetic changes usually happen during a person's lifetime rather than being inherited.

Some known risk factors include previous radiation therapy, especially high-dose radiation received for treating other cancers. Certain genetic conditions, such as neurofibromatosis type 1, Li-Fraumeni syndrome, and Gardner syndrome, can increase your risk. These hereditary conditions are relatively rare and account for only a small percentage of soft tissue sarcomas.

Exposure to certain chemicals has been linked to increased risk in some studies. These include vinyl chloride (used in plastics manufacturing), arsenic, and certain herbicides. However, most people exposed to these substances never develop sarcoma, and many people with sarcoma have no known chemical exposures.

Chronic swelling of an arm or leg, called lymphedema, can very rarely lead to a type of sarcoma called angiosarcoma. This typically occurs years after lymph node removal or radiation therapy. While this sounds concerning, the actual risk remains very low even among people with chronic lymphedema.

When to See a Doctor for Soft Tissue Sarcoma?

You should contact your doctor if you notice a new lump or if an existing lump changes in size, becomes painful, or feels different than before. While most lumps turn out to be benign, it's always better to have them evaluated.

Seek medical attention promptly if you have a lump that's larger than two inches across, feels hard or fixed in place, or has grown noticeably over a few weeks. Don't worry about feeling embarrassed or bothering your doctor, healthcare providers would much rather check something that turns out to be harmless than miss something important.

You should also see your doctor if you experience persistent pain in a specific area without an obvious cause, especially if it's accompanied by swelling or changes in how that part of your body functions. Numbness, tingling, or weakness in an arm or leg that doesn't improve should also be evaluated.

For symptoms in your abdomen, such as persistent pain, unusual fullness after eating small amounts, or unexplained changes in your bowel habits lasting more than a few weeks, it's worth discussing with your healthcare provider. While these symptoms are commonly caused by much less serious conditions, they deserve attention when they persist.

What are the Risk Factors for Soft Tissue Sarcoma?

Understanding risk factors can help you make sense of your diagnosis, though it's important to remember that having risk factors doesn't mean you will definitely develop sarcoma. Many people with multiple risk factors never get sarcoma, while others with no known risk factors do.

Here are the main risk factors that have been identified:

• Previous radiation therapy, particularly high doses used to treat other cancers
• Certain inherited genetic syndromes like neurofibromatosis type 1 or Li-Fraumeni syndrome
• Exposure to certain chemicals, including vinyl chloride and some herbicides
• Chronic lymphedema (persistent swelling) in an arm or leg
• Age, as risk increases with age, though sarcomas can occur at any age
• Having a damaged immune system due to medications or certain medical conditions

Some less common risk factors include having had certain viral infections, such as human herpesvirus 8, though this connection is still being studied. A family history of sarcoma is rarely a factor, as most soft tissue sarcomas are not inherited.

It's worth noting that the majority of people diagnosed with soft tissue sarcoma have no identifiable risk factors. This doesn't mean they did anything wrong or could have prevented their cancer. Sometimes, these genetic changes happen randomly as part of the normal aging process or due to factors we don't yet understand.

What are the Possible Complications of Soft Tissue Sarcoma?

While thinking about complications can feel overwhelming, understanding what might happen can help you work with your medical team to prevent or manage these issues. Most complications are manageable with proper medical care and planning.

The most concerning complication is the spread of cancer to other parts of your body, called metastasis. Soft tissue sarcomas most commonly spread to the lungs, though they can also spread to other soft tissues, bones, or organs. Regular follow-up appointments help catch any spread early when treatment options are most effective.

Treatment-related complications can include effects from surgery, such as changes in function if muscles, nerves, or joints are affected. Your surgical team will work hard to preserve as much normal function as possible while removing the cancer completely. Physical therapy and rehabilitation can help you adapt to any changes.

Radiation therapy, if used, might cause skin changes, fatigue, or stiffness in the treated area. These effects are usually temporary, though some skin changes may be permanent. Your radiation team will help you manage these side effects and provide strategies to minimize discomfort.

Rare complications might include infection at surgical sites, blood clots, or reactions to chemotherapy if it's part of your treatment plan. Your healthcare team monitors closely for these issues and has effective treatments available if they occur. Most people get through their treatment without serious complications.

How is Soft Tissue Sarcoma Diagnosed?

Diagnosing soft tissue sarcoma involves several steps, and your doctor will guide you through each one. The process usually starts with a physical examination where your doctor will feel the lump and ask about your symptoms and medical history.

Imaging tests are typically the next step and help your doctor see the size, location, and characteristics of the tumor. You'll likely have an MRI, which provides detailed pictures of soft tissues, or a CT scan if the tumor is in your chest or abdomen. These tests are painless and help your medical team plan the best approach for further evaluation.

The definitive diagnosis requires a biopsy, where a small sample of tissue is removed and examined under a microscope. Your doctor might perform a needle biopsy, where a thin needle is inserted into the tumor, or a surgical biopsy, where a small piece is removed during a minor procedure. This might sound concerning, but these procedures are typically done with local anesthesia and cause minimal discomfort.

Additional tests might include blood work to check your overall health and sometimes specialized genetic testing of the tumor tissue. If sarcoma is confirmed, you may have additional imaging, such as a chest CT scan, to see if the cancer has spread. This staging process helps determine the best treatment approach for your specific situation.

The entire diagnostic process can take several weeks, which can feel frustrating when you're anxious for answers. Remember that this thoroughness ensures you receive the most accurate diagnosis and appropriate treatment plan. Your healthcare team understands this waiting period is difficult and will keep you informed throughout the process.

What is the Treatment for Soft Tissue Sarcoma?

Treatment for soft tissue sarcoma is highly individualized based on the type, size, location, and stage of your cancer. The good news is that there are several effective treatment options, and your medical team will work with you to choose the best approach for your situation.

Surgery is the main treatment for most soft tissue sarcomas. The goal is to remove the entire tumor along with a margin of healthy tissue around it. Your surgeon will work to preserve as much normal function as possible while ensuring complete removal of the cancer. In some cases, this might require removing part of a muscle or other structures, but reconstructive techniques can often restore function and appearance.

Radiation therapy is often used along with surgery, either before to shrink the tumor or after to eliminate any remaining cancer cells. Modern radiation techniques are precise and help minimize side effects while maximizing effectiveness. The treatment is typically given over several weeks in small daily doses.

Chemotherapy may be recommended for certain types of sarcomas or if the cancer has spread. Not all soft tissue sarcomas respond well to chemotherapy, so your oncologist will consider the specific type and characteristics of your tumor. Newer targeted therapies and immunotherapies are also being used for certain sarcoma types.

For some rare types of sarcomas, specialized treatments might be available. Your medical team might recommend participating in a clinical trial if it offers access to promising new treatments. These trials are carefully monitored and can provide access to cutting-edge therapies while contributing to medical research.

How to Take Home Treatment During Soft Tissue Sarcoma?

Managing your care at home is an important part of your treatment journey. While your medical team provides the primary treatment, there are many things you can do at home to support your recovery and overall well-being.

Focus on maintaining good nutrition to help your body heal and cope with treatment. Eat a balanced diet rich in proteins, fruits, and vegetables when possible. If treatment affects your appetite, try eating smaller, more frequent meals and stay hydrated. Don't hesitate to ask about meeting with a nutritionist who can provide personalized guidance.

Gentle exercise, as approved by your doctor, can help maintain your strength and energy levels. This might include walking, light stretching, or physical therapy exercises. Listen to your body and rest when you need to, but try to stay as active as safely possible. Movement can also help with mood and sleep quality.

Managing treatment side effects at home requires good communication with your healthcare team. Keep track of any symptoms or side effects you experience and report them promptly. This might include pain, fatigue, skin changes from radiation, or digestive issues from chemotherapy. Most side effects can be effectively managed with medications or other strategies.

Take care of your emotional well-being too. It's normal to feel scared, angry, or overwhelmed at times. Consider joining a support group, talking with a counselor, or connecting with other people who have faced similar challenges. Many hospitals offer support services, and online communities can provide additional connection and understanding.

How Should You Prepare for Your Doctor Appointment?

Preparing for your doctor appointments can help you make the most of your time together and ensure you get the information and care you need. Being organized can also help reduce some of the stress and uncertainty you might be feeling.

Write down all your questions before your appointment, no matter how small they might seem. Include questions about your diagnosis, treatment options, side effects, and what to expect moving forward. Bring this list with you and don't feel rushed to ask everything. It's also helpful to bring a trusted friend or family member who can help listen and remember important information.

Gather your medical records, including any imaging studies, biopsy results, and reports from other doctors you've seen. If you're seeing a specialist for the first time, call ahead to ask what records they need and how to transfer them. Having complete information helps your doctor provide the best possible care.

Make a list of all medications you're taking, including over-the-counter drugs, supplements, and herbal remedies. Include the doses and how often you take them. Also, note any allergies or bad reactions you've had to medications in the past. This information is crucial for safe treatment planning.

Consider keeping a symptom diary before your appointment, noting when symptoms occur, how severe they are, and what helps or makes them worse. This information can help your doctor understand your condition better and track how you're responding to treatment over time.

Can Soft Tissue Sarcoma be Prevented?

Unfortunately, most soft tissue sarcomas cannot be prevented because they often develop without any known cause or preventable risk factor. This can feel frustrating, but it's important to understand that developing sarcoma is not something you caused or could have avoided in most cases.

For the small percentage of cases linked to known risk factors, some prevention strategies might help. If you work with chemicals known to increase sarcoma risk, following proper safety procedures and using protective equipment can reduce your exposure. However, occupational exposure accounts for only a tiny fraction of sarcoma cases.

If you have a genetic condition that increases your sarcoma risk, regular medical monitoring might help detect any tumors early when they're most treatable. Your doctor can recommend an appropriate screening schedule based on your specific risk factors and family history.

While you can't prevent most sarcomas, you can take steps to catch them early. Pay attention to your body and see a doctor for any new lumps, especially those that are growing, painful, or larger than two inches. Early detection often leads to better treatment outcomes and more treatment options.

Maintaining overall good health through regular exercise, a balanced diet, not smoking, and limiting alcohol can support your immune system and general well-being. While these habits don't specifically prevent sarcoma, they contribute to better overall health and may help you tolerate treatment better if it becomes necessary.

What's the Key Takeaway About Soft Tissue Sarcoma?

Soft tissue sarcoma is a rare but serious type of cancer that can be successfully treated, especially when detected early. While receiving this diagnosis can feel overwhelming, remember that treatment options have improved significantly, and many people go on to live full, active lives after treatment.

The most important thing you can do is work closely with an experienced medical team that specializes in sarcoma treatment. These cancers are complex and benefit from specialized care, so don't hesitate to seek a second opinion or ask for a referral to a sarcoma specialist if needed.

Remember that every person's situation is unique, and your prognosis depends on many factors specific to your case. While it's natural to search for information online, try to focus on reputable medical sources and remember that statistics don't predict individual outcomes. Your doctor can provide the most accurate information about your specific situation.

Finally, don't forget to take care of your emotional and mental health throughout this journey. Having cancer affects more than just your physical health, and it's important to seek support when you need it. Many resources are available to help you cope with the challenges and uncertainties that come with a cancer diagnosis.