NCI: Lynch Syndrome Workshop and Shining Light on Cowden Syndrome

  Approaches to Blue Ribbon Panel Recommendations: The Case of Lynch Syndrome The National Cancer Institute (NCI) is convening a Workshop on February 22–23, 2017, in Rockville, Maryland, to discuss issues related to cancer genetic testing approaches, current practices, and resources for case and family ascertainment in hereditary cancers, using Lynch syndrome as an example. Lynch syndrome is a genetically inherited disorder that increases the risk of colorectal and endometrial cancers and several other malignancies. It is estimated that in the United States, up to 1 million people live with… more...

Guardian of the Genome: An Overview of Li-Fraumeni Syndrome

Li-Fraumeni syndrome When I was initially diagnosed with Lynch syndrome, I became highly interested in other hereditary cancer syndromes and wanted to learn as much about them as I could. Reading about them gave me tremendous perspective. The more I read, the more I recognized the parallels between them … there may be some different cancer manifestations of these syndromes but for the most part the emotional gravity of having a hereditary cancer syndrome is the same. -Georgia You may be familiar with the BRCA genes and Lynch syndrome, but… more...

What is PGD? How Can It Help Those with Lynch syndrome?

What is Preimplantation Genetic Diagnosis and How Can It Help Those with Lynch syndrome?  Preimplantation genetic diagnosis (PGD) was introduced in 1990 and has provided a way to screen embryos for genetic conditions, chromosomal abnormalities, and mitochondrial disorders. This method enables couples to perform an embryo genetic analysis before transferring the embryo to the uterus during an in vitro fertilization (IVF) cycle. Before the introduction of PGD, the only option available to couples with a hereditary genetic condition was to naturally conceive and then perform prenatal testing, such… more...

Living With Lynch Syndrome, One Year On…

Kristen Lummis with her sons… Living With Lynch Syndrome, One Year On. Guest Blog by Kristen Lummis On May 29, 2015 I received a life changing phone call. It was from a physician sharing the results of a recent biopsy. “Mrs. Lummis,” he said in a too-soothing voice. “Are you okay to talk on the phone?” With those words, I learned I had cancer. Family Matters Early onset colorectal cancer is rife among my maternal relatives. Based on this history, I had my first colonoscopy at age 40. A few years later, a… more...

Lynch syndrome, Cancer Memoirs, and #Hcchat

Lynch syndrome “I have Lynch syndrome…now what?” I receive countless calls a week from people who have just been diagnosed with Lynch syndrome. Many of them have doctors who fail to refer their patients to a certified genetic counselor and this is an enormous problem. Physicians must refer patients to a certified genetic counselor if they suspect or discover a patient is at risk. All too often, patients leave their doctor’s office with their positive genetic test results feeling confused, distraught, and fearful. I see this every single day. If… more...

February’s #Hcchat: What You Need To Know About Immunotherapy And Lynch Syndrome Related Cancers

February’s #Hcchat: What You Need To Know About Immunotherapy And Lynch Syndrome Related Cancers Do you have Lynch syndrome or a Lynch syndrome related cancer? Then you most definitely do not want to miss this #Hcchat on Twitter. We will be discussing immunotherapy and Lynch cancers with Stephanie Goff, MD,  from the NIH. February’s #Hcchat: What You Need To Know About Immunotherapy And Lynch Syndrome Related Cancers If you are unable to participate then please note that you may access the transcript on February 19th here: more...

Ellen Matloff Unplugged

Ellen Matloff Unplugged I was on the phone one day last winter with Amy Byer Shainman, my BRCA #BFF, and we were talking about starting #Lschat (Lynch syndrome Chat) on Twitter. Lynch syndrome was in dire need of a strong media presence on Twitter and so that is when I decided to begin #Lschat (Lynch syndrome chat). Amy and I had participated on various other Twitter chats and wanted to mix things up a bit by bringing an expert onboard; I wanted to be sure we were providing our audience with… more...

“Mutation” of the Month: FAP by Genetic Counselor, Sarah Witherington

First, before every genetics person writes me an email regarding my use of the word mutation, please let me explain. I chose the title because it’s nice having two M’s together, it looks and sounds nicer frankly than saying “Genetic Syndrome of the Month”, and because it will give me a chance to explain exactly what is a mutation. This “mutation” of the month column will become a monthly blog and so it’s even more important to make sure we are all on the same page. Try to remember… more...

The Cancer Olympics Author, Robin McGee: “Do Age Guidelines Mislead Us in Colorectal Cancer Detection and Diagnosis?”

  Thank you, Georgia, for your kindly invitation to share on this blog. My name is Robin McGee. By day, I am a mild-mannered psychologist. By night, I am a crusading cancer activist. Georgia has positively reviewed my book The Cancer Olympics (http://amzn.to/1gx2mv6). It relates the harrowing story of my very late stage diagnosis of colorectal cancer after years of bungled and inadequate medical attention. It also relates how my community and I successfully lobbied against unfair drug policies in my home province of Nova Scotia, resulting in the best… more...

Loving My Zen

I was completed humbled and honored to be on CureTalk with Priya discussing the emotional implications of Lynch syndrome this past Monday. If you must absolutely listen to it, please click on the following link: http://www.blogtalkradio.com/curepanel/2014/06/16/what-is-lynch-syndrome-and-its-emotional-implications. It was a tad disconcerting for me at first because of the phone delay and I couldn’t tell if I had been cut off or what. Regardless, I was a little nervous but overall I thought the conversation went well and have been told that many found it to be highly… more...

Recent Tweets

Genetic Counsel Twitter Topic
My Gene Counsel Web Linked Image
BRC Ad Link

Sponsorships

Counsyl

Partnerships

Chicago Genetics Consultants
Chicago Genetics Consultants