10 Things I've Learned From Having Lynch Syndrome

Knowing I have Lynch syndrome has been a double-edged sword for me. I feel fortunate to know I have Lynch – I have been the first in my family to take preemptive strikes against Lynch syndrome related cancers.
PUBLISHED June 23, 2015

Georgia Hurst is a patient advocate for those with Lynch syndrome. She has the MLH1 mutation and fortunately has never had any cancer. She is the co-creator of #GenCSM (Genetic Cancer Social Media) on Twitter, and her advocacy work has afforded her opportunities to write for medical journals, various websites and genetic testing companies, as well as collaborate as a stakeholder for the National Academy of Sciences: Genomics and Population Health Collaborative. Her loves include: her son, her dog, books, photography, long walks in the woods, and seeking out fungi after the rain. Her motto is: "There is enough misery in the world – there’s no need to contribute to it.”

1. Knowing I have Lynch syndrome has been a double-edged sword for me. I feel fortunate to know I have Lynch — I have been the first in my family to take preemptive strikes against Lynch syndrome-related cancers, but I also feel tremendous survivor guilt because my oldest brother is dead due to colon cancer, while my other brother is living sans colon.

2. Living without my reproductive organs, due to prophylactic surgery (a hysterectomy plus bilateral salpingo-oophorectomy) since the age of 40 has been exceptionally challenging. I am not the same person without my reproductive parts and never will be. I miss my ovaries every. damn. day.

3. I am allowed to feel any way I deem fit about my situation — I don’t let others dictate my emotions for me. Lynch syndrome is a difficult diagnosis and the swath of health issues which have resulted from surgery to reduce my individual cancer risk cannot be minimized.

4. My genes do not have to determine my genetic destiny. My predisposition to cancer does not give me license to not assume responsibility for my health. If anything, I have to be more vigilant.

5. Genetics and the narratives behind genetic syndromes are fascinating. There are more similarities between the various hereditary cancer syndromes than differences.

6. Having Lynch syndrome for me has been expensive. I am fortunate to have great medical insurance, which covered most of my medical bills from my prophylactic surgery. However, the various forms of HRT, psychiatric and psychological intervention, therapies and other treatment needed to help me have been and continue to be very expensive and stressful. 

7. Time and people are not to be taken for granted; cherish them but remove those from your life who do not nourish you. Life is too short to tolerate those who are committed to making you miserable.

8. Two of the greatest challenges I have had to deal with is that my memory has significantly declined and my personality has changed with the removal of my ovaries — I’m afraid it’s affected how some people perceive me.

9. I am not alone in all of this and meeting others, like Amy Byer Shainman, a BRCA1 previvor, has been instrumental in helping me reconcile my diagnosis and adds levity to the absurdity of the entire situation. 

10. We go to great lengths to protect our children throughout their lives. Had I known of my diagnosis prior to pregnancy, I would have taken measures such as PGD (preimplantation genetic diagnosis) to be assured my child would not inherit my Lynch syndrome gene mutation. The worst part of having Lynch syndrome is knowing that I may have unknowingly passed this gene mutation onto my son. The only saving grace is that if my son tests postive for Lynch syndrome, he will be aware of his necessary health screenings and will not have to have his reproductive organs removed.
 
 Yours,

Georgia M. Hurst, MA
Website: ihavelynchsyndrome.com
Twitter: @ShewithLynch
 
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