Websites and Support Groups are Critical in Your Treatment

Over the last 5 years many support groups and websites have been developed which offer information, resources, access to groups and chat rooms, and even radio stations.

It is not easy to navigate through the overwhelming information available on the web. It is even more important today that we evaluate these information sources to make a better decisions on treatment.

About two years ago, I joined revolutionhealth.com because I wanted to provide a voice to guide patients and help them understand and weigh the information available. Through that process, which has been very rewarding, I got to know many unselfish people who were going out of their way to help others. Unfortunately Revolution Health became too commercial, and I found in the C3 website a wonderful new home among people who are experts in colon cancer and have made it their mission to fight for patients and families and the community.

Many of my patients have become proactive in the fight against this disease and provide help and advocacy groups to push legislatures to fund more research, screening programs, and access to health care.

Two of my patients have had a significant impact. One is Mike Stennis, who was my patient and was, in fact, a famous college football player for the University of Hawaii. He was diagnosed with metastatic colon cancer, and we fought the best we could.  His wife was a big supporter, and after his passing she founded the Stennis Foundation, one of the few foundations focusing on colon screening and prevention in the African American community. She is heavily involved in pushing for screening programs in California and providing health insurance coverage.

Another of my patients, a firefighter, founded the Firefighter Cancer Support Network, which got him invited to speak in the United States Senate and with many high-ranking politicians to increase awareness of colon cancer. Because of his involvement and preliminary data on colon cancer risk in firefighters, USC has launched a research project to determine the risk for firefighters getting colon cancer.

Our local Wellness Communities play a critical role. They offer unique resources, particularly support groups where you can meet others in similar situations. They are very helpful resources for general information as well as information about new clinical trials. My colleagues and I visit most of these Wellness Communities at least once a year to meet with the colon cancer support groups and update them on the latest research. My next lecture will be on March 31 in Pasadena Foothills Wellness Community at 6pm.

Not sure if you were able to listen last Sunday when one of my patients and I were on the radio with Selma Schimmel. She does radio talk shows on cancer every Sunday from 1 to 3, providing experts on the air for patients to call in with questions. On the show was Hannah Vogler from the Colon Club. This is another helpful resource. Patients can chat with each other and discuss all kind of issues related to their therapy, diagnosis, experiences with their doctors, what is new etc. Read the history of the Colon club , which is amazing.

The Colon Club is an excellent place to exchange your experiences and identify some additional resources and ideas about how to deal with side effects, look for new treatment options, and find another person going through the same treatment who can understand you very well.

It has been very clear to me that the patient support groups such as the Colon Club, Wellness Communities, and others are an essential part of  success in the treatment of colon cancer. I find it amazing what some of patients have created and are overwhelmed with their generosity to give back to the community.

Your experiences and advice to your fellow patients have a completely different value than my expertise. Both are very important to get the best outcome. We need the facts, we need emotional support, and we need honesty to find the best treatment, the best hospital, the best doctor, and the best environment to ensure we get the best outcome. Some of these are only possible when patients help each other.

We often suggest that newly diagnosed patients talk to someone who has gone through the same therapy or someone in a similar situation such as a young woman with family or a patient who may need a colostomy. These interactions are incredibly valuable and part of our way of helping, but we need you in our quest to make our patients feel comfortable and reduce their anxiety. You as patients know these things much better and can explain them to your fellow patients. The power and impact patient advice can have should not be underestimated.

Patient-directed support groups and academic centers working together will increase quality of life as well as the success of all of our interventions. Make sure you take advantage of what have other patients have to offer.

There are some cautions. I have seen some of my patients have a hard time with support groups, not because they are not happy or have any bad experiences, but because they get to know other patients very well who have the same disease and see some of them progress and pass away. It is very difficult in many cases to deal with their loss and face their own fears of dying.