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NCCN Guidelines for Patients


Soft Tissue Sarcoma, Version 1.2014


Multidisciplinary team

Treatment of desmoid tumors takes a team of experts

who have experience with this disease. If you have

a desmoid tumor, it is important that all the experts

meet before your treatment is started to create the

best treatment plan. Your treatment team will also

meet while you are going through treatment and

afterward to discuss the treatment results and the

next steps of care. Your team of experts may include a:

In most cases

• Pathologist—an expert in testing cells and

tissue to find disease,

• Radiologist—an expert in imaging tests,

• Oncology surgeon—an expert in operations

that remove cancer,

• Medical oncologist—an expert in cancer


• Radiation oncologist—an expert in radiation

treatment, and a

• Nurse—an expert trained to care for the sick.

In some cases

• Thoracic surgeon—an expert in operations

within the chest,

• Gastroenterologist—an expert in digestive


• Plastic surgeon—an expert in operations to

improve function and appearance,

• Social worker—an expert in meeting social

and emotional needs,

• Occupational therapist—an expert in helping

people live life unaided or with devices,

• Physical therapist—an expert in helping

people move better,

• Nutritionist—an expert in healthy foods and

drinks, and a

• Genetic counselor—an expert in explaining

testing for hereditary diseases.

Medical history and physical exam

Your medical history includes any health events in

your life. It also includes any medications you’ve

taken or are taking. Since some health problems run

in families, your doctor will ask about the medical

history of your blood relatives.

Desmoid tumors often occur for unknown reasons.

However, some people have syndromes that increase

their chances of getting these tumors. Gardner’s

syndrome and FAP (







are such syndromes. Both are rare disorders that

increase the chances for cancer and desmoid tumors.

Your doctors will assess if you likely have either of

these syndromes.

Doctors often perform a physical exam along with

taking a medical history. A physical exam is a review

of your body for signs of disease. During this exam,

your doctor will listen to your lungs, heart, and gut.

Parts of your body will likely be felt to see if organs

are of normal size, are soft or hard, or cause pain

when touched.

Imaging of tumor

Imaging tests make pictures (images) of the insides

of your body. Imaging of the tumor is recommended.

You may receive CT or MRI. CT takes many x-rays

of the same body part from different angles to make

detailed images. MRI uses radio waves and powerful

magnets to make images. These tests can show your

doctors how large a tumor is and how close it is to

other tissues.

A contrast dye may be used to make the images

clearer. The dye will be injected into your vein, mixed

with a liquid you drink, or both. The dye may cause

you to feel flushed or get hives. Rarely, serious

allergic reactions occur. Tell your doctor and the

technicians if you have had bad reactions in the past.


Desmoid tumors

Treatment planning