A Summary from Dana Farber’s LYNKED IN Conference: Connecting and Empowering Lynch Syndrome Families 2017

The Dana-Farber’s Center for Cancer Genetics and Prevention in Boston just held their second annual LYNKED IN conference on March 18th. The stated goal of the conference is to provide information to patients, as well as their families and caregivers. This was my first experience attending anything pertaining to the Lynch community. I follow Georgia’s website — ihavelynchsyndrome.org — and social media regularly, so I feel like I have an online presence in the community, but I wanted to take the time to actively engage and perhaps… more...

Compassion Fatigue

About six years ago I read a book entitled: “The Monks and Me.” It is about a women’s experience at the venerable Thich Nhat Hahn’s Plum Village Monastery in France. Ever since then I have wanted to visit this monastery and spend one week there. I immediately put it on my bucket list in hopes of going there one day. Like many of those with hereditary cancer syndromes, I have spent the past six years on an enormous physically, emotionally, and spiritually challenging rollercoaster. Prior to my… 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...

G’s Book Review of The Gene By Siddhartha Mukherjee

G’s Book Review of The Gene “Human beings are ultimately nothing but carriers — passageways — for genes. They ride us into the ground like racehorses from generation to generation. Genes don’t think about what constitutes good or evil. They don’t care whether we are happy or unhappy. We’re just means to an end for them. The only thing they think about is what is most efficient for them.” – Haruki Murakami  Sid and I have something profound in common: “Scarcely a day passes in my adult life when I do… more...

Living with Lynch syndrome: Guest Blog by Elizabeth Cappaert

My last entry in August 2015 (http://goo.gl/xzW91x) focused on my upcoming hysterectomy and emotional reactions. I mentioned that I was diagnosed with colon cancer in May, Lynch syndrome in June, and endometrial cancer in July. Here, I hope to share in greater detail about what I’ve lost, found and claimed since I first heard “cancer”. My first cancer diagnosis came in May 2015. After 2 trips to the ER for unendurable abdominal pain, I was finally referred to a GI doctor who scheduled a colonoscopy.… 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...

#Hcchat: Should We Test Minors for Hereditary Cancer Syndromes?

#Hcchat: What About The Kids? Should We Test Minors For Hereditary Cancer Syndromes? I’m honored to announce that Pathway Genomics is sponsoring #Hcchat on Monday. Much gratitude to them for also supporting ihavelynchsyndrome.org’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… 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...

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