(ARA) – Thanks to public awareness campaigns, cancer is no longer a taboo topic. Disease education and resources seem readily available for more common cancer types like breast and colorectal cancers. However, there are many types of cancers, called rare cancers, where information may not be so easy to find.

While rare cancers do not receive wide attention, they can affect a significant number of people. For example, in the US alone, there are up to 6,000 new cases each year of gastrointestinal stromal tumors (GIST), a rare but life-threatening cancer of the gastrointestinal tract.

GIST are found mostly in the stomach or small bowel. They often do not cause any specific symptoms, making it difficult to diagnose and to treat. For patients facing rare cancers like GIST, getting diagnosed and determining the right next steps can feel like uncharted territory. Al Lotz of Alliance, Ohio, knows this all too well.

Al is a decorated Vietnam Veteran who has always prided himself on his good physical health, so it was upsetting to him when he began to experience sudden and rapid weight gain in 2003. After consulting his doctor of more than 20 years, he was told to watch his diet, and exercise more. Listening to this advice, he started eating healthier and continued his exercise regimen, and was surprised that he was still gaining weight. Even more worrisome was that he also began experiencing weakness and troubling stomach pains.

When the pains became unbearable and were coupled with diarrhea and vomiting, Al decided he needed to go to the emergency room. It was there that doctors told Al something he never expected to hear: he had a tumor the size of a basketball in his stomach. It was immediately removed, but Al did not find out until after the surgery that the tumor was diagnosed as GIST.

Because GIST is a cancer, Al was then referred to an oncologist, a doctor who specializes in cancer. The oncologist worked with Al to develop a plan to best manage his health.

“After many months of not knowing what was wrong with me, it was unbelievable to find out I have cancer and even more daunting to learn that the cancer I have is one none of my friends or family had ever heard of,” recalls Lotz, a long-time clinical counselor, addictions specialist and Tai Chi practitioner. “Finding helpful information and access to other patients going through the same thing I was going through was extremely difficult. Through the Internet I was able to find a support and research organization devoted exclusively to GIST and things became incredibly easier. I am also lucky to have a great team of doctors who helped me create a disease management plan.”

Experts say the best way for a patient or family member to help manage their or their loved ones’ rare cancer is to be their own advocate for their disease management. Patients should seek out several opinions when looking for a diagnosis, and form their own team of professional experts after diagnosis. Active ongoing dialogue with many specialists in various fields, and connecting to others in their same situation, will help give patients the most information.

“Getting an accurate diagnosis and seeking out the best disease management often involves the expertise of a multi-disciplinary health care team, that can include a primary care physician, pathologist, oncologist and surgeon,” says Dr. Jeffrey D. Wayne, fellow of the American College of Surgeons, and an associate professor in the department of surgery, at Northwestern University. “In addition to proper medical care and treatment, it is also important for every patient to seek emotional support. Family, friends and online patient resources can make a significant and positive impact on a patient’s outlook.”

Web sites such as GIST Earth (www.GISTearth.com), an online social networking community, can help patients feel less alone by providing a portal for them to privately share, support and connect with others like themselves.

“I am happy that I found the best approach for me to help manage my GIST,” says Al Lotz. “Since I got my disease on track, I’ve continued to enjoy time with my large family, including watching my 17 nieces and nephews grow up, and continue in my consecration to the service of others. Every sunrise is a gift, ever day a celebration, every sunset a time for gratitude.”