DEAR DR. GOTT: Our family has recently been hit hard by a rarely identified genetic cancer called hereditary diffuse gastric cancer. My husband’s mother died of an unidentified stomach cancer at the age of 52 in 1982. Now we have also lost my husband, at age 58 in early 2009, due to stage IV stomach cancer. He was in superb health before this nearly-impossible-to-detect disease raced from his stomach to other organs where it was finally detectable.
Early in his disease, he wondered about a family risk factor, but we didn’t fit the criteria for genetic testing. Only when his sister and I pushed forward with our request, did we find that six of seven family members tested positive. Younger family members still await testing when they are in their late teens, so there may be several more at risk in our small family. Fortunately, three family members so far have had preventive total gastrectomies, with post-surgical pathology showing numerous cancer foci; they are considered cured and are doing very well. Tragically, we didn’t know about our risks before my husband became ill, so we couldn’t prevent his death.
“People with family histories of lobular breast cancer, colon cancer, and/or advanced diffuse gastric cancer, especially under the age of 50, need to learn their risks by seeing a genetic counselor for more information.” [“Hereditary Diffuse Gastric Cancer: Updated consensus guidelines for clinical management and directions for future research” R.C. Fitzgerald, et al. J. Med. Genetics 2010 47:436-444]
Please help us raise awareness and educate others about stomach cancer, including hereditary diffuse gastric cancer, to help save lives around the world. This is one of the few cancers which can be prevented, but only if information is available to families at risk and their doctors. Our non-profit organization, dedicated to advancing both education and research about stomach cancer is working toward a national Stomach Cancer Awareness month in November for these very reasons.
Our family has established a website with oversight by an esteemed scientific advisory board of scientists, medical professionals, genetic counselors, and a registered dietician. We would greatly appreciate your mention of the site: www.NoStomachForCancer.org.
Thank you so much for your consideration of educating the public about this devastating but little recognized disease. We know that lives would be saved with information in your column.
DEAR READER: Hereditary diffuse gastric cancer is, indeed, rare. It is the result of a genetic anomaly passed down from a parent that drastically increases the risk of developing this and the other cancers you mentioned. It is autosomal dominant which means only one copy of the anomaly is needed.
I must admit I do not know much about this condition. Unfortunately for sufferers, much of the information (what little there appears to be from reliable sources) is often highly technical and difficult to understand. Therefore, I applaud you turning a tragedy into something positive.
For that reason I have printed your letter in the hopes that others will be helped. Thank you for writing and sharing your story.
