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Sarcoma Patient FAQ (Frequently Asked Questions)

What is Sarcoma?
Sarcoma is the name applied to a variety of malignant tumors that occur in fat, tendon, muscle, bone, cartilage, and nerve cells. Sarcomas are rare in comparison to carcinomas, which develop in the glands and organs of the body such as lung, breast, and prostate. It is estimated that 7,500-8,000 new sarcomas occur annually in the U.S. out of a total of over 1 million new cancer cases per year.

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Why is it important to know the exact diagnosis of a sarcoma?
The ideal treatment for cancer varies depending on the diagnosis. Some cancers are cured with surgery alone, while others do not require surgical therapy, and many respond best to a combination of surgery, radiation, and chemotherapy.

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How can you be sure of the diagnosis?
In many cases a presumptive diagnosis can be made on the basis of the physical examination and state-of-the-art imaging studies. However, a tissue sample (biopsy) examined by a trained pathologist is required for a more exact or definitive diagnosis. The biopsy may be done with a needle or by a surgical incision and should be either performed by a surgeon familiar with the approach to definitive management or at least discussed with such a surgeon, in order to avoid complications in eventual management of the tumor.

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What if the diagnosis is uncertain?
Some sarcomas are very difficult to diagnose, even by an experienced pathologist. In these cases, consultation among your surgeon, oncologist, radiologist and pathologist may be required. In the absence of a consensus on the diagnosis, a second biopsy may be required as well as consultation with experts in sarcomas in treatment centers around North America.

What are the next steps after a diagnosis is confirmed?
Accurate staging of the tumor is essential to selecting the appropriate treatment and sequence of treatment.

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What is staging?
This is the process your doctors use to define the extent and aggressiveness of your tumor. Staging requires an accurate grading by the pathologist as to whether the tumor is a high-grade or low-grade tumor. High-grade tumors have a greater chance of both regrowing in the same area after a previous surgical removal (local recurrence) and spreading to other sites (metastasis) in the body. The next element of staging depends on the type of tumor but is designed to identify the local extent of the original tumor and any distant (metastatic) spread of the tumor. Other factors important for staging include the tumor size and location.

Local extent of tumor is usually defined by a Magnetic Resonance Image (MRI). Distant spread is usually defined by a Computerized Axial Tomogram (CAT) Scan of the lungs to look for tumor in the lungs. SARCOMAS tend to spread through the blood stream and when they do the malignant cells are filtered out in the lungs and begin growing there as small tumors (nodules) knows as metastases. Some nodules may be seen on CAT scans of the lungs that are not malignant and depending on the characteristics of the nodules your physicians may elect to observe them over time with repeated scans or biopsy them. Certain sarcomas may spread to bones and the bone marrow (blood cell tissue inside of the bone). Radioactive isotope scanning of the skeleton "Bone Scan" is done for these tumors. Those sarcomas that may show up in the bone marrow require a Bone Marrow Biopsy.

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What is the BEST TREATMENT for a sarcoma?
Treatment is divided into local control and distant (systemic) control. In those sarcomas known to have a high probability of distant spread, initial therapy frequently involves systemic chemotherapy to eradicate any microscopic disease that is present or potentially present in the lungs or elsewhere in the body. [Staging with CAT scans is only capable of identifying a tumor nodule that has already grown to several millimeters in size. Historical data has demonstrated that with certain sarcomas, despite a negative (tumor free) lung CAT scan at the time of primary tumor eradication, patients may eventually develop lung disease (metastases).] Local control of the primary tumor usually requires surgery or radiation treatment and the extent and timing of one or both of these will depend on the exact diagnosis, anatomic extent of the tumor, and anatomic location of the tumor.

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Can I be cured of my sarcoma?
The term "recurrence" or "relapse" is used to indicate that a tumor has come back. When a person has a cancer, a "cure" can only be proclaimed after living for a prolonged period of time without having the cancer come back. Therefore, cancer doctors have traditionally looked at the time interval after diagnosis that someone survives without evidence of the tumor recurring and called this the disease-free survival interval. When someone survives for 5 years after diagnosis and treatment for a cancer, without having it return, many physicians would consider this milestone as an acceptable definition of a "cure".

What is the cure rate for sarcomas?
The likelihood of cure is very patient and tumor specific. The population statistics for cure give some indication of risk, dependent upon the tumor stage, but even when disease factors indicate that the risk of progressive disease is high, some patients will survive for long durations of time (several years) with adequate treatment. Your doctors will rely on the stage of your tumor at initial presentation to determine the statistical probability of cure for the individual tumor and therapy selected. In general, the likelihood of surviving for 5 years, after being diagnosed with a sarcoma that has not spread to any sites beyond the original site of growth, is 65% to 80%. When distant disease (metastasis) is present at the time of initial diagnosis, the cure rate is lower.

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How should my treatment be monitored?
When a local recurrence or pulmonary (lung) metastases occurs, 80-90% do so in the first 30 months after diagnosis. For routine surveillance after completing treatment for a sarcoma, we recommend follow-up examinations for five years.

Should my care be done at a major cancer center?
Since sarcomas are rare tumors every hospital or cancer center will not have a large experience. As is true with most medical conditions, an experienced team of physicians and nurses dedicated to the management of such problems may offer distinct advantages in confirming an accurate diagnosis, establishing a state of the art treatment plan, providing access to clinical research protocols where appropriate and providing education on the tumor and treatment options to the patient and family.

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Summary: Diagnosing and managing a patient with a sarcoma may be a complex issue, requiring a multidisciplinary group of professional experts, who work together collaboratively with the patient's best interest as the foremost priority.

Learn about the sarcoma care team and how to make an appointment at the University of Minnesota.

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Return to: Bone & Soft Tissue Cancers (Sarcomas)


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Content development for the Bone & Soft Tissue Cancers (Sarcomas) section was supported by the Karen Wyckoff Rein in Sarcoma Fund.