image by: Lynch Syndrome International
My genes don’t define me. I am AliveAndKickn. Pretty bold statement. AliveAndKickn is more than just a name. It’s a way of life. I joke that Lynch syndrome is the genetic predisposition to colon cancer, endometrial cancer, other cancers…and soccer. But that’s just me. Besides half a dozen surgeries since 1997, I have and still play the game I love. You may find your own game, or hobby, or solace in something that can help you in your day.
Lynch Syndrome, other hereditary cancers, even other disorders are difficult to absorb and overcome. We’re here for you. We are looking to make a difference for you and others, both current and future with hereditary cancer. Part of that is helping…
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David Dubin was diagnosed with a genetic mutation called Lynch syndrome. A hereditary cancer that is estimated to affect almost 1 in every 300 Americans – which means that it isn’t at all rare. But the staggering number of those who may be carriers of an alteration in a gene that commonly causes colorectal cancer and/or endometrial cancer and not know it is what really sets Lynch syndrome apart.
I learned a lot from having Lynch syndrome for 30 hours. I learned, firsthand, how terrifying genetic testing can be, even when you’re doing it just for kicks. I learned that, even as a genetic counselor who specializes in this area, it is almost impossible not to panic and consider the worst.
Lynch syndrome is one of the most common hereditary cancer syndromes and is characterized by the development of many cancers, such as colorectal cancer (CRC), endometrial cancer, ovarian cancer, stomach cancer and many other cancers.
Lynch syndrome is surprisingly common...
I got this new tattoo to remind me that everyday is a great day to be alive. It represents what I have dealt with most of my adult life. I chose this tattoo to symbolize everything I have dealt with, from my first cancer diagnosis to being diagnosed with Lynch Syndrome.
Lynch, with a background in genetics and psychology, wanted to know more about this family and its high prevalence of cancer. His investigations into this and other such families led to the discovery of hereditary non-polyposis colorectal cancer, which in 1984 was renamed Lynch syndrome. They also resulted in the discovery of breast-ovarian cancer syndrome, which in turn led to the identification of the BRCA genes.
A half-century ago, when researchers said cancers were caused by exposure to toxins in the environment, Dr. Henry T. Lynch begged to differ.
Many cancers, he said, were hereditary.
Also consider Lynch syndrome — an inherited illness linked to colorectal cancer. There are several genes associated with Lynch syndrome, and if you test positive, you might begin getting colonoscopies in your 20s rather than your 60s — a screening regime that is tailored to your particular genetic risk instead of the general population. Again, health care tailored to your genes.
While finding out you have Lynch Syndrome can feel overwhelming, ultimately this knowledge can help ensure you get on the right path of screening and early detection, which can be life saving. Try to learn as much as you can about your family history and share it with all of your providers.
Though the potential health benefits with genetic screening are many, there are also personal considerations, such as the fact that some companies also offer results for untreatable conditions, like early-onset Alzheimer’s. People should carefully consider if they want information before testing.
I was 22 years old when in 2010, I went to A&E with bleeding from my bowel. I wasn’t long out of university, still living at home and working my part-time job at a local supermarket, and I’d never been admitted to hospital for as much as a broken bone. But here I was, being passed from my GP to the hospital, being kept in overnight and having four pints of blood poured back into me.
A common and underdiagnosed inherited genetic condition, Lynch syndrome increases one’s risk for a variety of cancers, including colon, rectal, uterine, ovarian, urinary tract, and others. Individuals with a mutation in one of five known Lynch syndrome genes are carriers of the disease.
Lynch syndrome does not cause cancer and has no readily identified symptoms, but the faulty gene predisposes carriers to a dramatically increased risk of developing one or more primary cancers over their lifetime.
The new year leaves me contemplating where I am now, and where I have been to get here. When I discovered I had Lynch syndrome more than five years ago, I was absolutely horrified and developed death anxiety. Every single aspect of my life became magnified. I could not help but feel as though a ticking time bomb had been strapped to my back – it was only a matter of time before it went off.
Within 10 minutes of discussing Preimplantation Genetic Diagnosis with the doctor, I knew that there was no question about what my husband and I were going to do – we had to do it.
Aldred Scott Warthin, MD, PhD, Chairman of the Department of Pathology at the University of Michigan in Ann Arbor, reported the first family with the disease we now call Lynch Syndrome.
Colonoscopies are life savers. Even though individuals with Lynch syndrome are up to 16 times more likely to develop colon cancer compared to the average person, frequent colonoscopy starting at age 20 reduces the chances to develop colon cancer to less than that of the average person.
Lynch Syndrome is the most common form of hereditary colorectal cancer, with over 1.2 million people in the US currently diagnosed. Up to 3-5% of all colorectal cancer is due to Lynch syndrome. Unfortunately, this hereditary cancer is highly underdiagnosed – it is estimated that 95% of people who have Lynch don’t know they have it.
I recently had the opportunity to speak with Georgia Hurst, the founder and executive director of the nonprofit ihavelynchsyndrome.org. After losing one brother to colon cancer and having another brother diagnosed, Georgia learned she has Lynch syndrome. Lynch syndrome is a hereditary cancer syndrome that puts her (and any of her relatives that share her mutation) at risk for not just colon cancer, but also other cancers such as uterine, ovarian, stomach and small bowel cancer. Family communication about risk is one of the toughest topics in genetics...
Genetics is taking huge strides almost every day. Precision medicine, immunotherapy and gene sequencing are the future. We thank you for being a part of our lives. I’m humbled to be part of yours. Be resilient.
To improve the lives of individuals and families affected by Lynch syndrome and associated cancers through research, education and screening.
The HEROIC Registry is a patient-centric genetic database that will enable patients to take an active role in furthering research into Lynch syndrome genetic mutations. The HEROIC Registry allows patients to contribute medical information and their experiences living with Lynch syndrome and its associated cancers to help researchers develop new treatments...
Lynch Syndrome Intl (LSI) is dedicated towards raising awareness, providing education to the public and doctors & promoting research.
Educate the public and healthcare professionals about Lynch Syndrome and to help fund research for a cure for this disease.
About three to five percent of colon or rectal cancers (colorectal cancers) are believed to be caused by mutations in the MLH1, MSH2, MSH6, PMS2 and EPCAM genes.
People who have Lynch syndrome have a significantly increased risk of developing colorectal cancer. There is also an increased risk of developing other types of cancers, such as endometrial (uterine), stomach, breast, ovarian, small bowel (intestinal), pancreatic, prostate, urinary tract, liver, kidney, and bile duct cancers. Lynch syndrome is among the most common hereditary cancer syndromes, and estimates suggest as many as 1 in every 300 people may be carriers of an alteration in a gene associated with Lynch syndrome. Clues to whether there is Lynch syndrome in a family include diagnoses of colorectal and/or endometrial cancer in multiple relatives on the same side of a family.
People with Lynch syndrome are more likely to get colorectal cancer and other cancers, and at a younger age (before 50)...
Lynch syndrome (LS) is a condition that can run in families. LS is also known as hereditary non-polyposis colorectal cancer (HNPCC). It is caused by an alteration in a gene called a mismatch repair gene. LS doesn’t cause any symptoms. But people with LS have an increased risk of developing bowel cancer, womb cancer and some other cancers. If your family has a history of developing these cancers when they are under 50 years old, it is possible they have the altered gene that causes LS.
Identifying patients with Lynch syndrome is clinically important because these patients have up to 80 percent lifetime risk of colorectal cancer and up to 60 percent lifetime risk of endometrial cancer.