Be your own advocate: Get the information you need

Getting a diagnosis of any kind of cancer can be frightening. One of the first things many patients do is learn everything they can about their illness, including what options for disease management and treatment are available. This can be challenging if a person's cancer is considered rare, which defined by the National Institutes of Health as a cancer that affects fewer than 200,000 people.

Patients with rare cancers are more likely than those with more common cancers to say they lack access to credible and reliable information, causing them to feel alone in dealing with their disease, according to a national survey. For many like newlywed Carolina Williams, getting the right diagnosis and information about her GIST, a rare and life-threatening cancer, was important to both her and her family.

One day, about a year into her marriage, Carolina Williams became extremely bloated and experienced terrible stomach pains which came on suddenly. Her husband knew something was seriously wrong when he found her unconscious on the floor from pain. He immediately brought her to the emergency room. There a physician conducted a CAT scan which revealed a large mass in her stomach that was diagnosed as a benign cyst. After four days of medical procedures to drain the cyst, a 7-pound solid tumor was removed and tested for cancer.

"Once my doctor removed the tumor, I wanted to make sure that the hospital did the proper tests to check if the mass was cancerous," says Carolina Williams. "I wasn't going to leave it up to chance so I requested that an oncologist perform the tests. I am glad that I pushed for this, because I was soon diagnosed with a gastrointestinal stromal tumor, or GIST, which is considered a rare form of cancer. I was then able to get the information I needed to help understand my disease."

When it comes to helping manage their own disease and acting as their own advocate, patients should seek out resources both through their physicians and reliable online websites. For some rare cancers, like GIST, there are a number of online resources, including, an educational site for GIST patients and their families.

"It is so important for people with cancer, especially those with a rare cancer like me, to act as their own advocate when it comes to getting the right diagnosis, disease information and ultimately the right disease management plan," says Carolina Williams. "Working with my doctor and learning more about my disease has helped me focus on the other important things in my life, including enjoying time with my husband and taking care of my son. They mean the world to me."

About Gastrointestinal Stromal Tumors (GIST)
GIST is a rare, life-threatening cancer of the gastrointestinal (GI) tract. Most cases of GIST develop in the stomach or small bowel. They often do not cause any specific symptoms, making it difficult to diagnose and to treat. The exact number of people diagnosed with GIST each year is not known. In the U.S. alone, the incidence of GIST is estimated to be up to 6,000 new cases each year.

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