Living as a Soft Tissue Sarcoma Survivor

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

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

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

Follow-up care

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

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

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

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

Ask your doctor for a survivorship care plan

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

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

Keeping health insurance and copies of your medical records

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

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

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

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

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

About dietary supplements

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

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

If the cancer comes back

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

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

Could I get a second cancer after treatment?

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

Getting emotional support

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