A guest blog from Georgia Hurst, as she worries about the impact of her diagnosis of Lynch Syndrome on her son. Read more at ihavelynchsyndrome.com
“I will not get sick, but if I do…
…I will have the strength to endure it.”
This is my new mantra. The above photo is the view from my zafu when I go to Buddhist Temple for meditation; the solace this gives me is immeasurable. I have been finding myself at Temple a lot lately, meditating and reaching for my internal strength to deal with the unbearable anxiety and stress which currently confront me. I’m trying not to discuss it with people; it’s too much for me to process, let alone them. Besides, I feel as though I put them into a precarious position if I do bring it up because there are no words available to them which can possibly comfort me at this time. I am going to Mayo Clinic in 11 days and the anxiety is increasing by the minute. I am expecting the worst, whilst hoping for the best. I’m sure I am not the only one with Lynch syndrome that feels this way when it’s close to testing time. The plethora of emotions are running rampant in me little head. I feel guilt. My oldest brother did not have a chance, my second brother does not have a colon – and then I think of all of the people I’ve met through my blog and Facebook and other forms of social media who are fighting for their lives because they, too, have been blindsided by this genetic curse. Damn you, Lynch syndrome. I feel anger because I may have given this to my beautiful little boy. If I knew for sure that this monster ended with me with 100% certainty, I would at least not have to fret about my child. I also feel anger for all the children who are watching their parents suffer and die, leaving them with a life of endless uncertainties and insecurities. I feel sad, not for myself, but for my family, my dog, and my friends; because I know that part of you dies when someone you love dies. I feel lucky; I’m fortunate to know I have this genetic mutation, have insurance, and have the ability to exhibit some control of it; I get to go Mayo and get see the Rock Star Doctors of Lynch syndrome. I feel confident; I keep reminding myself that I eat well, exercise, surround myself with loving, nourishing people, animals, books, etc., and have eliminated every imaginable toxin in my life. I feel fearless and empowered in many ways; yet, helpless in so many others. I vacillate between optimism and negativity; perhaps I should simply stop it and end up somewhere in the middle. I am exhausted, whilst I exhibit every possible emotion known to humanity. I long for the days when I didn’t know of my charming genetic nemesis and wasn’t emotionally imprisoned by Lynch syndrome. I would give everything I have to simply appreciate a few minutes of life sans Lynch. Two weeks from today, I will know if everything I talk about truly matters or if my genetics will trump everything I think and do. I just want spend the next several days being fearless. Fearless. Fearless. Fearless. In the eloquent words of Tagore: Let me not pray to be sheltered from dangers but to be fearless in facing them. Let me not beg for the stilling of my pain but for the heart to conquer it. Let me not look for allies in life’s battlefield but to my own strength. Let me not cave in… Yours, Georgia Hurst, MA ihavelynchsyndrome.com This post was written in late April before I went to the Mayo Clinic in early May for my annual testing; I received a clean bill of health and not even one little polyp was found in my colon.
Our new study shows that we can do much more to identify patients with Lynch syndrome in the UK. We already know that diagnosing Lynch syndrome can affect the treatment of a patient with bowel cancer – and can save the lives of their family members. Every team dealing with bowel cancer patients needs to routinely discuss the possibility of an inherited cancer syndrome. This study has just been published in the journal ‘Frontline Gastroenterology’.
Lynch syndrome is the most common familial bowel cancer syndrome. European guidelines suggest selective screening of appropriate colorectal cancer patients, according to the revised Bethesda criteria. Many eligible patients do not undergo the necessary investigation.
What this study adds
This is the first time that UK practice in this area has been evaluated. Our patients are assessed haphazardly for Lynch syndrome, and we do not follow international guidance. This will lead to under-diagnosis and missed opportunities to reduce cancer mortality. impact on clinical practice in the foreseeable
Colorectal cancer teams should incorporate a revised Bethesda assessment into the routine discussion of each new patient. They should develop screening and referral pathways with their local genetics services. This aspect of their work can be audited and may become a quality standard in the future.
The “Family History of Bowel Cancer” clinic at the West Middlesex University Hospital, led by Dr Kevin Monahan, helps assess patients with a significant family background of cancers. Patients, GPs and other health professionals can read more about our service, and how to make a referral, at https://familyhistorybowelcancer.wordpress.com.