Hero of the Month Q&A: Lynch Syndrome Advocate Georgia Hurst

exs-lynchsyndrome-02

Each month, Be Seen, Get Screened features a member of the colon cancer screening community that has gone above and beyond to spread the word about colon cancer and the importance of screening. We call this Q&A session our Hero of the Month feature.

Our June Hero of the Month is Georgia Hurst, advocate and founder of IHaveLynchSyndrome.com.

Lynch syndrome is an inherited disorder that increases the risk of many types of cancer, particularly cancers of the colon and rectum.

After witnessing the effect of Lynch syndrome on several members of her immediate family, Georgia decided to undergo genetic testing to see if she, too, had the syndrome.

She received a life-altering diagnosis, but rather than dwelling on the negatives, she turned her experience into an opportunity for others to learn about the syndrome and seek a system of support within a Lynch syndrome community they never knew existed.

Be Seen Get Screened: Tell us about your personal experience with colon cancer and Lynch syndrome.

GH: Lynch syndrome seems to enjoy running in my family, specifically in my immediate family. Nineteen years ago, my oldest brother died from colon cancer at the age of thirty-six. Several members on the paternal side of the family had suffered from various cancers but colon cancer affected my father, uncle, and brother.

I knew my brother was too young to die from colon cancer and realized there must be a genetic component to what was happening in our family – I just did not know to what degree. I did not want my brother’s death to be in vain so I gladly began having colonoscopies every three years.

My other brother was diagnosed at the age of forty-eight with stage 1 colon cancer in 2010 and subsequently had three feet of his colon removed. Six months later on a follow-up colonoscopy, two more large malignant tumors were discovered and that is when his physician requested he be genetically tested for Lynch syndrome.

He tested positive and informed me of his results and asked that I, too, be tested because our family has “Lynch syndrome.” As a result of this, he immediately underwent a total colectomy while I sought out genetic counseling and testing. I had never heard of Lynch before.

While I waited in agony for the results, I read every medical journal I could find that pertained to Lynch syndrome. Ten days later, I discovered I tested positive for the same mutation – I was horrified. I have a son and could not help but fret about him growing up without me.

Two weeks after I was diagnosed, I had prophylactic surgery, which consisted of a total hysterectomy with a bilateral salpingo-oophorectomy because I was at risk for ovarian cancer and the current screening measures for it are poor.

Having surgery afforded me the opportunity to take some control of my life and my genetic destiny; I was dramatically reducing my chances of malignancy to my reproductive organs.

BSGS: Why did you start IHaveLynchSyndrome.com?

GH: I wanted to give Lynch syndrome a much-needed voice. When I was initially diagnosed with Lynch syndrome, I was struck by the lack of information regarding the emotional aspects of being diagnosed with a deleterious gene mutation; I could not help but feel like a walking time bomb.

Furthermore, I was unprepared for forced menopause at the age of 40 because my doctors minimized what would become of me afterwards. I wanted people to know that there are implications to having prophylactic surgery and removing body parts.

You may be preventing cancer but you are possibly subjecting yourself to a plethora of other medical issues as a result.

I suffered tremendously from my oophorectomy; I became severely depressed, suffered from nausea, frequent vomiting, migraines, and severe lethargy for the first couple of years after my surgery.

I knew I could not possibly be the only one suffering emotionally and physically from the Lynch diagnosis and forced menopause; no one was willing to talk about the downside of the diagnosis and the effects of the prophylactic measures.

Initially I was only going to blog for a few months in order to vent; I thought it would be a great catharsis for me, but I received a lot of positive feedback and encouragement within a few weeks of blogging from people all over the world; I had no idea that it would become my life’s work.

BSGS: Are you doing anything else to raise awareness of the syndrome?

GH: Most definitely! I write about the emotional aspects of having Lynch syndrome on my website ihavelynchsyndrome.com at least a couple times a week. I also write blog posts for esteemed medical sites.

I religiously use social media, especially Twitter, in order to connect with doctors and other medical professionals to raise awareness about Lynch syndrome and emphasize the importance of genetic testing, specifically in regards to Lynch syndrome.

I frequently attend medical conferences in order to meet with medical professionals and other advocates, and I have been on the radio to discuss Lynch syndrome. I also serve on the board for the Hereditary Colon Cancer Foundation.

BSGS: Why do you think there's so little information out there about Lynch syndrome?

GH: In comparison to other syndromes, Lynch syndrome is still pretty elusive and unpredictable. Doctors, in general, are unaware of this syndrome and its implications. Early onset cancers (<50) within a family, specifically of the colon, endometrium and ovaries are cause for great concern as they could suggest Lynch syndrome.

Approximately 600,000 to 1,000,000 people in the United States alone are carriers; yet only 5% of this estimate knows it; (that is 30,000-50,000 people).

If doctors do test a patient for Lynch syndrome, they usually do so without the help of genetic counselors. This is highly problematic because some doctors and their patients do not understand the full spectrum of implications regarding Lynch syndrome and what screening measures are required in order to prevent or detect malignancy.

A Lynch diagnosis has implications for entire families and genetic counselors can help with the notification, explanation, and testing process for these family members.

BSGS: What is one thing everyone should know about Lynch syndrome?

GH: Genetic testing can save your life and the lives of others in your family. Do not bury your head in the sand about this. It holds consequences for everyone in your family, not just you.

I recently heard a story about a father with a strong family history of early onset cancer who refused to be genetically tested for Lynch syndrome and now he is wracked with guilt and regret for it. His 40-year-old son recently died from colon cancer– and now the father is also battling colon cancer. 

BSGS: What do you say to others out there who may be battling Lynch syndrome?

GH: Your genes do not have to determine your destiny and you do not have to wait passively for Lynch cancers to manifest.

Factors such as exercise, a healthy plant-based diet, meditation, a sanguine personality, and thorough annual screening are imperative in your fight against Lynch syndrome.

BSGS: Do you have anything else to share with us?

  • Had I known about my mutation earlier, it would have given me pause about having a child because the absolute worst part of having Lynch syndrome for me is that I may have unknowingly passed this onto my son.

    I may have explored options such as Pre-implantation genetic diagnosis (PGD), which is a process, which refers to the genetic profiling of embryos prior to implantation; or I might have considered adoption.
  • If you can afford it, I highly recommend going to places such as Mayo Clinic, MD Anderson, or UCSF where they are exceptionally knowledgeable about Lynch syndrome and can conduct all of your screening and tests within a few days.

    I go to Mayo Clinic every year for mine and derive tremendous solace from knowing I am getting the best possible medical care.
  • Read about other genetic disorders; there are far worse things out there than Lynch syndrome, especially genetic mutations which affect children.

    Reading about them will give you tremendous perspective and make you realize that you have more control over the situation than most other people with deleterious gene mutations.
  • Lynch syndrome is a highly emotional and challenging diagnosis to reconcile for most people; finding a psychotherapist who specializes in people with genetic disorders can be very helpful.

    Many people initially believe they are “walking genetic time bombs” and do not understand the implications of holding a deleterious gene mutation.

    Currently, screening and prophylactic surgery are both highly recommended for those at high-risk, while the constellation of other factors which may contribute to one’s development of cancer are often ignored.

    Screening is simply not enough; living with Lynch syndrome requires an emphasis on living a healthy lifestyle.
  • An annual colonoscopy is highly recommended for those with Lynch syndrome. Many patients are unaware that colonoscopy can be done with sedation and therefore are fearful of the procedure.

    Most people complain about the prep for colonoscopy because of the taste and the quantity of prep, which must be consumed. People, especially men, are reluctant to undergo colonoscopies mostly due to the placement of the scope for the screening. 
  • It is fascinating how different cultures and groups view genetic mutations and therefore the “one size fits all” approach to advocacy is not effective due to social and cultural stigmas.

    Cultural and ethnic differences need to be recognized and addressed; genetic counselors and doctors, with the help of medical anthropologists, need to specifically tailor discussion and treatment to accommodate different groups.

    Specific cancers may hold huge stigmas amongst certain groups, which in turn hold implications for whether or not a particular group will be screened. 
  • There are noticeable differences between the sexes in regards to Lynch syndrome. On various social media platforms, with emphasis on Facebook and the many Lynch syndrome websites and blogs, women are more likely than men to reach out and discuss their emotional and physical issues and seem to have better support.

    I would love to see more men discussing their experiences with Lynch syndrome.

Register For Be Seen, Get Screened

Topics: Hero of the Month