Soft Tissue Sarcoma: FAQs

Here you can find a listing of frequently asked questions about sarcoma, answered by Murray Brennan, former Chair of Memorial Sloan-Kettering’s Department of Surgery.

1. Is sarcoma cancer?

Yes. Sarcoma is a malignant tumor of the soft tissues of the body, such as fat, muscles, nerves, tendons, and blood and lymph vessels. (Soft tissue sarcomas are uncommon: According to the American Cancer Society, approximately 10,500 new cases of soft tissue sarcoma are diagnosed each year in adults and children in the United States.)

When the sarcoma starts in bone rather than soft tissue, it is called osteogenic sarcoma, or chondrosarcoma (cartilage sarcoma).

2. Are all sarcomas the same?

No. Soft tissue sarcoma covers a wide range of tumors. Some grow slowly; others are highly malignant tumors that may have already, at the time of first diagnosis, spread to other sites and may not be curable.

3. What kinds of people get sarcomas?

Sarcomas can affect anyone, from the young to the old. Different kinds of sarcomas occur at different ages. We do not know of any particular personality type that is at more risk of sarcoma than others.

4. What determines whether I have a “good” or “bad” sarcoma?

You will hear a lot about the risk factors for survival from sarcoma. These are mainly:

• The location of the tumor
• The size of the tumor
• Whether it has spread to other parts of the body
• The special characteristics of the tumor that can only be determined after biopsy
• The “grade,” Which is an important term you will hear about during the pathologic analysis

5. What is meant by the term “grade” when referring to sarcomas?

Grade is a descriptive term provided by the pathologist who examines the tissue. Grade is a measure of how aggressive the tumor could become. Low-grade tumors usually stay confined to one place. High-grade tumors have the capacity (usually seen in up to half of large high-grade tumors) to spread elsewhere.

6. Where can soft tissue sarcomas spread?

It depends on where they start. In high-grade soft tissue tumors of the limbs, the most common site of spread is to the lung. Soft tissue sarcomas inside the abdomen can spread to the liver. Most physicians experienced in the management of sarcoma will be able to tell you what your risks are, and where to look for spread.

7. Am I going to die?

The majority of patients with soft tissue sarcoma are cured. In fact, the five-year survival rate for people with soft tissue sarcomas in an extremity is about 90 percent, if the cancer is found in the early stages. It should be noted that treatments are improving and often result in an even more favorable prognosis for patients recently diagnosed.

8. Is sarcoma painful?

No. Pain is uncommon in sarcoma unless it is advanced or in a rare site.

9. What are the important questions to ask my doctor before treatment?

Perhaps the most important thing is to be sure you are talking to a doctor who understands, and has experience with, the management of sarcoma. Because the disease is so rare, it is very important to see a doctor who knows about such tumors. This is important not only to ensure that you get the best treatment, but also to avoid getting more treatment than you need. Sarcoma specialists usually work with a team, so if the primary sarcoma physician is an expert, you can expect him or her to have the best and most experienced pathologists and radiologists and other professionals to help.

10. Is amputation ever a part of treatment for sarcoma?

Yes, but much less commonly so today. Twenty years ago, amputation was virtually the only form of treatment for patients with sarcoma of the limbs. It is now required in fewer than one in 20 of all such patients.

11. Will I need chemotherapy?

Chemotherapy is usually given before an operation for very high-risk sarcomas, and in some cases, it is also given after a tumor has spread.

12. Will I need radiation therapy?

Radiation therapy is commonly given after surgery in the place where the sarcoma was removed. This can limit the risk of a local recurrence.

13. Are there different forms of radiation therapy?

Yes. Brachytherapy is the local application of radiation therapy through small tubes placed under the skin at the time of surgery. Treatment usually lasts about four or five days. External-beam radiation therapy is given over the course of four to six weeks for a few minutes a day, five days a week.

14. When will I know if I am cured?

In soft tissue sarcoma, cure is difficult to assess. For the majority (70 percent) of patients, recurrence happens in the first two years after treatment. However, patients with sarcoma are usually followed for a minimum of ten years, as some patients do experience a very late recurrence. Such late recurrences are often more favorable, and can be readily and effectively treated.

15. Why is sarcoma so rare?

We really do not know.

16. Does sarcoma run in families?

Sarcoma can occur in families, but that, too, is very rare. Usually there is some predisposing disease that is known to lead to an increased frequency of sarcoma. If your doctor is familiar with sarcoma, he or she will be familiar with those diseases.

17. Can sarcomas be caused by chemicals?

We believe that, on rare occasions, sarcomas can be caused by environmental exposure at high level to some chemicals. This, too, is rare.

18. Why is sarcoma hard to diagnose?

Because sarcoma is rare, very few doctors ever encounter a patient with sarcoma in their lifetime. They probably do see benign lumps and bumps often, however, so it is not always likely that they will consider a diagnosis of sarcoma.

19. Can injury cause sarcoma?

We believe this is very rare. More commonly, patients first notice a sarcoma when they bump a lump on their leg or on their arm.

20. Who should treat me?

The most important thing is that you see a doctor who is familiar with sarcoma. Whether that doctor is a surgical oncologist, an orthopaedic (bone) oncologist, a radiation oncologist, or a medical oncologist is probably less important than having a doctor who is familiar with the disease. A doctor familiar with sarcoma can send you in the right direction for diagnosis and treatment, and aid in a rapid recovery.

21. How can my family help me?

As in the treatment of any cancer, the support of family and friends can be crucial. Do not be afraid to ask your friends and family to help. Often, the simplest thing is the most helpful: Help me find the right doctor, please drive me to the hospital so I don’t have to find parking, please look after my children and pets while I am away.

22. How can I help myself?

Educate yourself and learn to understand your disease. Ask questions of your medical team, and be an active partner. While it is certainly true that the diagnosis of sarcoma, or any cancer, can be frightening, it is not the diagnosis that hurts us. It is important for your emotional well-being that you not imagine the worst when the worst is not likely to happen. It may help to remember the adage, “Living with cancer is not a problem, dying of it is.”