Jim Turner's Story

Jim Turner's story illustrates the importance of monitoring carcinoid after the removal of tumors, the damage untreated carcinoid tumors can cause, and the benefits of taking charge of your medical care. Perhaps most importantly, Jim reminds us that we can live an active and full life while living with carcinoid.

What's in a Name?

The Central Pennsylvania Carcinoid Support Group has changed its name to Pennsylvania Carcinoid Cancer Advocacy Network (PCCAN). Credit goes to group member Kara for creating a name that acknowledges our group's broader mission to support AND educate AND promote awareness.

Is carcinoid cancer rare?

Dr. Irvin M. Modlin, professor of surgery at Yale University School of Medicine, as quoted in a story in the Dallas Morning News, March 21, 2005.

"Something is only rare because people can't diagnose it."

Shirley Jelinek's Story

Carcinoid cancer presents differently depending on the location of the primary tumor and the production of the tumors, requiring individualized treatment plans that fit both the disease and the person. Shirley, whom I have had the honor of meeting, has chosen to follow a very conservative, wait and see approach.

Other options that many of the carcinoid experts might recommend are 1) removal of tumors while they are small to prevent interference with other organs and to reduce tumor production that can lead to damage (including carcinoid heart disease), and 2) use of Sandostatin to reduce tumor production and deter growth. An even more aggressive approach would be systemic chemotherapy.

The best chance, and arguably the only chance, to be cured of this disease is to catch it early, while it is small, and remove it before it spreads.

Jadon White's Story

This news story highlights the frustrations of dealing with carcinoid and the need to be your own advocate by becoming your own carcinoid expert. The story appeared in The Dallas Morning News and is part of series about the healthcare system in Dallas.

Carcinoid tumors are extremely rare. Only about 5,000 are diagnosed each year, and those tend to be in women in their 50s or 60s. Young men get them so rarely that a Parkland doctor called Jadon "an unusual case among unusual cases." Why someone develops a carcinoid lung tumor is a mystery. Smoking and other environmental hazards have been ruled out as causes.

Further complicating this mystery, carcinoid tumors are not even considered cancer by most doctors, said Dr. Irvin M. Modlin, one of the country's top carcinoid experts. The tumors grow much more slowly than cancerous ones. Yet carcinoids can't be considered benign growths because they can spread from one organ to another, the textbook definition of cancer.

Dr. Modlin, a professor of surgery at Yale University's School of Medicine, has studied carcinoid tumors for 20 years and believes that many physicians don't understand the potential of these tumors to metastasize, or spread.

Living with Carcinoid Cancer: Hope for the Future

Date: Sunday, April 10, 2005
Time: 2:00 – 5:30 p.m.
Place: Mount Sinai Medical Center, NY, NY

The METRO NY CARCINOID SUPPORT GROUP is hosting this event. The lecture titled "Current Treatment of Carcinoid and Neuroendocrine Tumors: The Dana-Farber Experience 2005" will be presented by Matthew H. Kulke, M.D., Assistant Professor of Medicine, Harvard Medical School, Department of Medical Oncology, Dana-Farber Cancer Institute, Boston, MA

RSVP by April 4, 2005. Go to the Metro New York Support Group web site for details and to register.

Carcinoid Cancer Support Group - Central PA

I am pleased to announce that Dr. Harold Harvey of Hershey Medical Center will be our guest speaker at the Sunday, March 20th meeting. The meeting is held from 2 – 4, at Hershey Medical Center, Hershey, PA, in dining room A at the rear of the cafeteria. If you plan to attend please RSVP at CarcinoidSupport@juno.com
so that we have the appropriate amount of materials available.

The Central Pennsylvania Carcinoid Support Group provides a forum for those living with carcinoid cancer, as well as their family and friends, to learn from others’ experiences and to share their own. It also seeks to promote awareness of the need for earlier diagnosis, appropriate treatment, and better monitoring of carcinoid cancer.