After 2 years of telling his doctor something was wrong inside him Chris finally underwent exploratory surgery where a large tumor was removed from his intestines. It was carcinoid, NET's. It had spread to several lymph nodes and his liver. In the recovery room Chris's mom asked the doctor how long would he have to live with this type of cancer. The doctor told him maybe 5 years. Last month marked 24 years since the doctor had told him that. It has not been an easy 24 years but Chris soon figured out that with a rare cancer, as he had, he needed to become very knowledgeable about this disease. Chris learned about a National conference for NET's in San Francisco which he attended 20 years ago. It included 3 doctors and about 40 patients. At that conference, Chris learned of another conference in 2 years. Chris started attending every National conference there was. At each conference, Chris learned about treatments and medications that his own doctor had never heard of. Chris would tell his doctor what medication, at what amount and how often he should have it. His doctor was happy to concur.
The last conference Geneva and Chris attended was in New Orleans and included 20 doctors and over 800 patients. At a conference about 12 years ago Chris met Jeanette Shaffner who had started a support group for NET patients in Walnut Creek. He had heard of her but Chris was reluctant to go to a support group because he feared that it would be a lot of people asking "why me?". Jeanette said it wasn't like that at all. It was learning and information sharing. I attended a meeting and learned more than at many conferences I attended. People in the group had gone through medications and procedures I was considering for myself. In a few years, Jeanette asked Geneva and Chris to become board members. We did. A couple of years ago we sadly lost Jeanette.
Our current President Josh Mailman has done many amazing things with NCCN. He has written several websites that help hundreds of NET patients every month navigate their way through good decision-making with their disease. NCCN has started an annual conference in the Bay area which has attracted many of the leading NET specialists from around the world. We continue to hold our meetings in the virtual world - having expert NET speakers and new programs.
We work to help others, the newly diagnosed, and those who have had the disease for a long time get the best information and help they can to help fight this disease.
While Chirs has passed after nearly 30 years with this disease, Geneva continues to be on the NorCal CarciNET Community Board to support others with NETs
Thank you to everyone for your help and support.
The Hayes Family