Questions and Answers
1. Is sarcoma cancer?

Yes. Sarcoma is a malignant tumor of the soft tissues of the body, such as muscle, fat, tendon, and the joint lining. (It is uncommon, with fewer than 6,000 cases a year in the United States.)

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

2. Are all sarcomas the same?

No. Soft-tissue sarcoma covers a wide range of tumors. Some are relatively benign (that is, they do not spread, they grow slowly, and they do not invade or grow into other structures). Others are highly malignant tumors that can, at the time of first diagnosis, already have spread to other sites and may not be curable.

3. What kind of people get sarcomas?

Sarcomas can affect anyone, from the very youngest to the very oldest. 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 sarcoma. These are mainly:

·         Where is the tumor?

·         How big is it?

·         Has it already spread?

·         What are the special characteristics of the tumor that can only be determined after biopsy (sampling) of the tumor?

The important term you will hear about is "grade."

5. What is meant by "grade" for sarcomas?

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

7. Am I going to die?

The majority of patients with soft-tissue sarcoma can be cured.

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

Perhaps the most important question to ask is whether you are talking to a doctor who understands, and has some experience with, the management of sarcoma. Because the disease is so rare, it is very important to get to a doctor who knows about the tumor. This is important not only to assure that you get the best treatment, but also to avoid getting more treatment than you need.

9. Is amputation ever needed for sarcoma?

Yes, but less and less commonly today. Twenty years ago amputation was virtually the only form of treatment for patients with sarcoma of the limbs. It is now required in less than 1 in 20 of all such patients.

10. Will I need chemotherapy?

Chemotherapy is usually give before an operation for very high risk sarcomas and is also given after a tumor has spread.

11. Will I need radiation therapy?

Radiation therapy is commonly given to limit the risk of a local recurrence at the same place where the sarcoma was removed.

12. 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. It usually lasts about four or five days. These usually remain in place for four to six weeks for a few minutes a day, five days out of seven.

13. When will I know if I am cured?

In soft-tissue sarcoma, that is difficult to assess. In the great majority (70%) of patients whose disease will recur, this will happen in the first two years. However, patients with sarcoma are usually followed for a minimum of ten years, as some patients can have a very late recurrence of their tumor.

14. Why is sarcoma so rare?

We really do not know.

15. 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.

16. 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, however, is very rare.

17. Why am I told that sarcoma is hard to diagnose?

Because sarcoma is rare, very few doctors ever see a sarcoma in their lifetime. They do, however, often see benign lumps and bumps, so they may be unlikely to think of sarcoma.

18. Can injury cause sarcoma?

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

19. 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 orthopedic bone oncologist, a radiation oncologist, or a medical oncologist is probably less important than that the doctor is familiar with the disease. A doctor familiar with sarcoma can send you in the right direction for treatment.

20. 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/pets while I am out.