Living with Soft Tissue Sarcoma

New treatment options and scientific advances are helping people with soft tissue sarcomas live longer and with better outcomes. However, the journey from diagnosis to treatment and beyond is difficult and navigating the large amount of information about cancer is a daunting task for anyone. Learning about what to expect from your diagnosis and treatment may help ease your anxiety and teach you about ways to cope with disease and treatment-related side effects. This section is designed to provide information and resources to help you manage life before, during, and after treatment.

Healthy Living

Research has shown that people feel more energetic when they stay physically active. Activities such as walking, biking, swimming, and yoga will help keep your body strong and decrease stress. Daily exercise also increases appetite, speeds the healing process, and improves your chance of feeling better. Even if you were not physically active before your diagnosis, you can start including some exercise into your daily routine. Choose an activity you think you will enjoy and ask your doctor before you begin.

Physical activity and healthy eating can improve your overall health, boost your mood, and help you cope with some of the side effects of cancer and its treatment. Consider the following tips on maintaining a healthy lifestyle:

Eat a healthy diet rich in fruits, vegetables, and whole grains.
Limit your intake of red, grilled, or processed meat.
Increase your fiber intake.
Exercise regularly. Aim for 150 minutes of exercise per week with at least two sessions of strength training exercises per week.
Maintain a healthy weight.
Limit alcohol to fewer than 1 drink a day for women and fewer than 2 drinks a day for men.
Do not smoke.

Managing Side Effects

You may experience bothersome side effects from your cancer therapy or from the soft tissue sarcoma itself. It is important to remember that managing side effects is an essential component of each cancer patient’s care plan. Ask your doctor about what side effect(s) you may experience with your treatment, and let him or her know if you notice any new symptoms. Although the side effects you may experience largely depend on your treatment, the following are side effects common to many cancer therapies.

Pain is commonly caused by cancer and its treatment. Work with your doctor early to develop a pain management plan that meets your needs.
Lymphedema is an abnormal buildup of excess fluid in specific areas of the body, most commonly in the arms and legs. This swelling is caused by interruptions or blockages in the flow of lymphatic fluid caused by the removal of lymph nodes, or from cancer and its treatment.
Hair loss‒or alopecia‒is caused by some cancer treatments and usually begins within 2 weeks of starting treatment. Hair will grow back after treatment is complete.
Infusion-related reactions (IRR) may occur with some intravenous medications. Symptoms of IRR include flushing, shortness of breath, fever, chills, and allergic reactions. You will be monitored for these infusion-related reactions during infusion of your medications.

To minimize the side effects that you experience during treatment, your doctor or nurse may give you medications shortly before treatment. These medications may include:

Diphenhydramine, an antihistamine that blocks allergic reactions
Dexamethasone, a steroid that helps to treat inflammation, nausea, and vomiting
Dexrazoxane, a drug that prevents the cardiac side effects of certain chemotherapies (such as doxorubicin)

Changes to Your Body

You may notice physical changes to your body during or after cancer treatment. Some of these changes may be short term, such as hair loss, while others are permanent, like scars from surgery. Some common physical changes include:

Hair loss from chemotherapy
Skin changes from radiation
Scars or changes in appearance from surgery
Loss of limbs
Weight changes

It may take time for you to cope with these adjustments and you may have feelings of sadness or grief. However, most people do learn to adjust to the changes brought on by cancer and are able to move forward. If you are struggling to cope, ask your doctor to refer you to a counselor who can help you talk through your feelings. Your feelings of sadness and grief should begin to get better after a few weeks. If they do not, you may be experiencing depression. Treatments are available and you do not need to suffer in silence. Please see the “Frequently Asked Questions” section for more information on the signs of depression.

Staying Involved in Care

Talking often with your healthcare team and asking questions are important for making informed decisions about your health. There is no one-size-fits-all approach to treating cancer and it is vital that you receive personalized information about your cancer and health. Many people feel anxious about questioning their doctor or worried that they may not understand medical terms. The following strategies may help you talk to your doctor and get the information you need:

Take someone with you when you go to the doctor. This person can help by listening, asking questions, and taking notes.
Ask as many questions as you need to. Write down your questions and bring them with you to appointments. Ask your most important questions first and express yourself and your concerns clearly.
Remember that all of your questions are important. There is no such thing as a silly question when it comes to understanding your healthcare.
Ask the doctor to explain any medical terms you don’t understand.
Ask your doctor to write down any terms you aren’t sure about.
Repeat back what you heard the doctor say in your own words to make sure you understood the information.

The following is a list of potential questions you may want to ask your healthcare team. Remember that there are no silly questions and you should ask for clarification on anything you find confusing or unclear.

What type of sarcoma do I have? What stage and grade is my cancer? What do these terms mean?
What does my diagnosis mean? What is my prognosis?
Where is the tumor located?
Has this diagnosis been reviewed by a pathologist who is experienced in the diagnosis and classification of sarcoma?
What treatment plan do you recommend, and why? Is the goal of treatment to eliminate the cancer, or make me feel better?
What are the possible short-term and long-term side effects of this treatment?
What is the chance that the cancer will return? Should I monitor for specific signs or symptoms?

National Cancer Institute. Soft Tissue Sarcoma – Patient Version. https://ww.cancer.gov/types/soft-tissue-sarcoma. Accessed March 14, 2019.

Cancer.net. Sarcoma, Soft Tissue: Questions to Ask the Health Care Team. https://www.cancer.net/cancer-types/sarcoma-soft-tissue/questions-ask-health-care-team. Accessed March 14, 2019.

American Cancer Society. Soft Tissue Sarcoma. https://www.cancer.org/cancer/soft-tissue-sarcoma.html. Accessed March 14, 2019.

American Cancer Society. How do I cope? Available at https://www.cancer.org/treatment/understanding-your-diagnosis/after-diagnosis/how-do-i-cope.html. Accessed March 14, 2019.