I’m honored to announce that Pathway Genomics is sponsoring #Hcchat on Monday. Much gratitude to them for also supporting ihavelynchsyndrome.com’s advocacy efforts. #Hcchat will be focusing on a controversial topic: Should We Test Minor Children for Hereditary Cancer Syndromes? I can assure you this #Hcchat will be very informative and thought provoking. If you’re interested in #Hcchat, you may also, want to know it’s important offshoot: #Hcchat (Hereditary cancer chat) News. It’s a monthly newsletter and a fantastic collaboration effort by all top the hereditary cancer syndrome patient advocates to bring you all the latest news, blogs, books, and much more on various hereditary cancer syndromes. Please find the link here: https://goo.gl/jt9NY7
Some interesting articles in the medical news lately and the most important one this past month has to do with Lynch syndrome screening. “In a recent study, few patients whose families met clinical criteria for hereditary non-polyposis colorectal cancer (Lynch syndrome) had undergone genetic testing, and only a small percentage of their doctors had given them appropriate screening recommendations.” This is a huge problem and why I cannot emphasize the importance of certified genetic counselors enough. A certified genetic counselor will let you know which mutation you have and which screening measures are needed for your particular mutation. They should also be able to assist you in find doctors who are well-versed in Lynch syndrome. Frequent, meticulous screenings are crucial for cancer prevention or at the very least, catching cancers early in those with Lynch syndrome when they are most treatable. Please go here to find a certified genetic counselor -> nsgc.org or contact me and I will help you find one. http://goo.gl/Y8WQlZ
Another interesting study came out about women with BRCA and osteoporosis …”Despite that carriers of BRCA mutations who undergo prophylactic oophorectomy are at risk for bone loss, these women are underscreened for bone mineral density, according to study results presented at the Society of Gynecologic Oncology Annual Meeting on Women’s Cancer. However, the use of hormone-replacement therapy lowered the risk for significant bone loss osteoporosis, results showed.” It is therefore recommended that those with undergo this prophylactic surgery to discuss bone density tests with their doctor and to consider having the test every two years for bone evaluation. I think it’s pretty safe to say that women with Lynch who undergo the prophylactic oophorectomy should consider discussing this issue with their doctor, too. For more: http://goo.gl/Yfxud5
Have you read the recent research regarding staying out of the sun? According to a recent study published March 21st in the Journal of Internal Medicine, you may want to consider spending a little more time in the sun. Contrary to popular belief, avoiding the sun like the plague is not a health benefit. Researchers studied nearly 30,000 Swedish women and found that nonsmokers who stayed out of the sun had a similar life expectancy to smokers who basked in the sun. Sunbathers not only lived longer but if they did develop cancer, they fought it better than those who avoided the sun. Please click here to read the article: http://www.medscape.com/viewarticle/860805
I love apps — especially those, which are helpful in improving my behaviors, which contribute to my good health. I think those of us with hereditary cancer syndromes need to be more mindful about living the healthiest life possible. With that said, IBM and Pathway Genomics have teamed up to create an exciting and progressive wellness app to take precision medicine to an entirely new level with the Pathway Genomics OME app. It utilizes information from Pathways “FIT” Test, a test which analyzes over 75 genetic markers known to impact metabolism, exercise, and energy consumption use within the human body. It provides information to doctors and their patients in order to help them understand how genetics and lifestyle may impact their diet, nutrition, and exercise. Essentially, this app can be a highly useful tool by encouraging people to make positive changes to their health by giving them personalized insight in order to lead a healthier lives. As always, please talk to your doctor before making any major lifestyle changes with diet, or starting a new exercise program. https://www.pathway.com/pathway-fit/.
To learn more about their array of hereditary cancer tests, please go to https://www.pathway.com/hereditary-cancer-tests/.
Those of you in or near Ohio with Lynch syndrome and Hereditary Breast and Ovarian Cancer syndromes … please save the following date!
April 30, 2016, Conference on Hereditary Breast and Ovarian Cancer) and Lynch syndrome
“Our fourth Beyond Risk conference for individuals with Hereditary Breast and Ovarian Cancer (HBOC) and Lynch syndrome (LS) will be held this spring! This is an event designed specifically for people affected by these conditions and their families. We will provide information and management updates promote early cancer detection and cancer risk-reduction. We also hope to have time for you to make connections with others so you can meet other families share your stories, and support one another. Give my best to Heather Hampel my best and tell her G sent you!
Date: April 30, 2016
Time: 10am – 2:00 pm (Lunch will be provided)
Location: The Fawcett Center, 2400 Olentangy River Rd., Columbus, OH 43210
Check your mailboxes in the next few weeks for a registration brochure or contact us at firstname.lastname@example.org for more information.”
Please be sure to join us on Twitter on Monday, April 25th at noon EST for #Hcchat.
Georgia Hurst, MA
Founder and Executive Director of the nonprofit: ihavelynchsyndrome.com (501c3)