Frequently Asked Questions

How is soft tissue sarcoma staged and graded?

Tumor grade describes how abnormal the cancerous cells look under a microscope and how quickly the cells are growing. The grade of your cancer helps to determine your chances of recovery. Low-grade soft tissue sarcomas grow slower and look more like normal cells than high grade tumors.

Additionally, your cancer will be given a stage depending on its size and if it is spreading to other parts of the body. Lower-stage tumors have a better prognosis than higher stage tumors.

  • Stage IA: the tumor is 5 centimeters or smaller (about the size of a lime) and is low grade
  • Stage IB: the tumor is larger than 5 centimeters and is low grade
  • Stage II: the tumor is 5 centimeters or smaller and is mid or high grade
  • Stage IIIA: the tumor is between 5 and 10 centimeters and is mid or high grade
  • Stage IIIB: the tumor is larger than 10 centimeters (about the size of a grapefruit) and is mid or high grade
  • Stage IV: the tumor is any size or grade, and has spread to the lymph nodes or other parts of the body, such as the lungs
  • Recurrent: the cancer has returned after treatment

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

What is my prognosis?

Your prognosis is your expected chance of recovery from your cancer. Doctors often discuss your outlook by using survival rates, or the percentage of patients with the same disease who survive to a certain time point after diagnosis. For example, 5-year survival rates refer to the percentage of patients who live at least 5 years after their diagnosis. Many of these patients will live much longer than 5 years and may even be cured. Your prognosis will depend on many factors, including the type of sarcoma, the location of the tumor, type of treatment received, and your age and general health. One of the most important predictors of outcome is the stage of the tumor, or how far it has spread, when it is first diagnosed. If the sarcoma is discovered in an early stage and it has not spread, surgical treatment is often very effective and many people can be cured. Sarcomas that have spread to distant parts of the body are often difficult to control and the prognosis is worse for these patients.

National Cancer Institute 5-year Relative Survival Rates

  • 65% for all sarcoma patients, regardless of stage
  • 81% for localized sarcomas (tumor has not spread)
  • 58% for regional sarcomas (cancer cells have spread to nearby lymph nodes or tissue)
  • 16% for distant sarcomas (cancer cells have spread to distant sites in the body)

Memorial Sloan-Kettering Cancer Center 5-year Observed Survival Rates for Sarcomas of the Arms and Legs

  • 90% for stage I sarcomas
  • 81% for stage II sarcomas
  • 56% for stage III sarcomas
  • No data available for stage IV sarcomas

The 10-year survival rates for soft tissue sarcoma are only slightly worse than the 5-year survival rates, meaning that most people that survive 5 years after first diagnosis are probably cured.

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

What factors affect my prognosis?

The following are factors that indicate a better prognosis for soft tissue sarcoma:

  • Tumors less than 5 cm
  • Low-grade tumors are less likely to metastasize
  • Superficial tumors close to the surface of the body
  • Certain types of sarcomas, such as liposarcomas
  • Earlier stage at diagnosis
  • Sarcomas of the arms and legs
  • Negative surgical margins (no cancer cells in the area immediately surrounding a surgically removed tumor)
  • Patients under 60 years old

Canadian Cancer Society. Prognosis and survival for soft tissue sarcoma. www.cancer.ca/en/cancer-information/cancer-type/soft-tissue-sarcoma/prognosis-and-survival/?region=on. Accessed March 14, 2019.

What are the risk factors for soft tissue sarcoma?

Soft tissue sarcoma is very rare but there are several factors that can increase your risk of developing this form of cancer, including:

  • Past treatment with radiation for previous cancers
  • Exposure to certain chemicals (vinyl chloride, arsenic, Thorotrast (thorium dioxide), dioxin, Agent Orange)
  • Swelling (lymphedema) of the arms or legs for long periods of time
  • Certain inherited disorders (retinoblastoma, Li-Fraumeni syndrome, Werner syndrome (adult progeria), Gorlin syndrome (nevoid basal cell carcinoma syndrome), Gardner syndrome (familial adenomatous polyposis), von Recklinhausen disease (neurofibromatosis type 1), Bourneville disease (tuberous sclerosis))

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

What are the signs and symptoms of soft tissue sarcoma?

Sarcomas usually develop as painless lumps under the skin. Since sarcomas develop in soft tissues that can expand with a growing tumor, they may not cause signs or symptoms until they grow large. You may experience pain or trouble breathing if the tumor grows large enough to press on nearby organs, nerves, muscles and blood vessels. The tumor may cause blockage or bleeding of the stomach or bowels and you could experience blood in your stool or vomit, or black, tarry stools from digested blood. Uterine sarcomas may cause abnormal bleeding or spotting, abnormal discharge, and pelvic pain.

American Cancer Society. Signs and Symptoms of Soft Tissue Sarcomas. https://www.cancer.org/cancer/soft-tissue-sarcoma/detection-diagnosis-staging/signs-symptoms.html. Accessed March 14, 2019.

American Cancer Society. Signs and Symptoms of Uterine Sarcomas. https://www.cancer.org/cancer/uterine-sarcoma/detection-diagnosis-staging/signs-symptoms.html. Accessed March 14, 2019.

What is a biopsy?

If a soft tissue sarcoma is suspected, a biopsy may be performed to remove cancerous cells for testing. There are different types of biopsy that may be used:

  • Core biopsy: a wide needle is used to remove a small piece of tissue
  • Incisional biopsy: a part of the tumor is surgically removed
  • Excisional biopsy: the removal of the entire tumor or abnormal area
  • Fine-needle aspiration: a thin needle is used to take a tissue sample, usually guided by ultrasound

A pathologist is an expert in testing cells and tissues to help identify the type of disease. A pathologist will look under a microscope to observe the sample of cells removed in the biopsy and determine the grade of the tumor. High-grade tumors usually grow and spread faster than low-grade tumors. Since soft tissue sarcomas are rare and difficult to diagnose, you should ask that your biopsy sample be checked by a pathologist with experience in diagnosing soft tissue sarcomas.

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

 

How do I cope with my sadness and grief?

It is normal to experience grief, sadness, anger, crying spells, and fear after a diagnosis of cancer. Grief and sadness are normal, healthy reactions to the uncertainty of life with cancer. These feelings usually do not last long, and although they may seem like depression, they are not.

About 1 in 4 people with cancer develop depression. Depression may make it more difficult for you to seek help or keep up with treatment plans. Some people may be embarrassed or afraid to admit they are depressed. However, it is important to realize that depression is not a sign of weakness and it can be treated with medications or counseling. Talk to your doctor if you experience any of the following signs of depression:

  • Your grief lasts for week and doesn’t seem to be improving
  • You are having difficulty with day-to-day activities (such as being too sad to get out of bed or leave the house)
  • You feel useless, worthless, or hopeless
  • You have very low energy and decreased drive
  • You have trouble making decisions

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.

How do I find support groups in my area?

Support groups can be an important resource for people diagnosed with soft tissue sarcoma. They allow you to discuss your concerns, find people who understand what you are going through, and point you towards valuable resources you might not have found on your own. Soft tissue sarcoma is a rare disease and finding a support group may be more difficult than for other more common cancers. You can find local support groups by asking your doctor or the staff of a hospital that specializes in treating sarcoma, or through an online search. You may also consider joining a support group for patients with any type of cancer. Support groups vary in format, from in-person groups, to support groups for family and caregivers, to online or telephone support groups. No one support group is right for everyone and it is important that you find one that makes you comfortable. Use the resources below to begin your search:

CancerCare. Sarcoma Patient Support Group. https://www.cancercare.org/support_groups/159-sarcoma_patient_support_group

Cancer.net. Finding Support and Information. https://www.cancer.net/coping-with-cancer/finding-support-and-information

Sarcoma Alliance. Support Groups. https://sarcomaalliance.org/resources/support-groups/

American Cancer Society. Support Programs and Services. https://www.cancer.org/treatment/support-programs-and-services.html

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Living with Soft Tissue Sarcoma

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