One of the most common questions GIST patients ask of the Life Raft Group is how many cases of GIST out there are like mine? With a total of 1,279 GIST cases reported to us as of December 31, 2010, in the LRG’s Patient Registry, one would think all GIST patients would be in the same boat. However, it is not an easy answer as you may think. There are a few variables that need to be taken into consideration to see if a GIST diagnosis is truly the same. Two areas that should be looked at are the location of the tumor and how advanced the disease is when it is discovered (i.e. single tumor or metastases at diagnosis).
When we looked at the location of the tumor, 533 or 41 percent of cases of GIST were reported to us in the stomach at diagnosis, while 414 (32%) cases were located in the small intestines. While the majority of GIST cases do appear in the stomach and small intestines, we do have cases reported in which tumors appear in other areas such as the rectum, colon, and junction points like the small intestine and large intestine. Each of these areas comprises less than 5 percent of the patient registry.
When we also looked at the type of tumor at diagnosis, we see that 63 percent had a single tumor while 24 percent had metastatic GIST.
These numbers may make you feel like a rare part of a rare disease, but they are not meant to make patients feel isolated. On the contrary, the intent is to provide you details about your individual diagnosis so that you can identify groups of patients who have gone through similar experiences and are willing to share and connect with you. The Life Raft Group can help to facilitate this if you are looking to connect with patients who have similar diagnostic characteristics. Please feel free to contact us by email at firstname.lastname@example.org, or call our office at 973-837-9092, and let us know who you are looking to connect with.