Many people, maybe even most, have never heard of Lynch syndrome. Before being thrust into the world of hereditary cancer, I had not.
September 26 – October 2, 2021 is National Hereditary Cancer Week. It used to be called National Hereditary Breast & Ovarian Cancer Week or HBOC Week, which honestly, always prompted my brain to think, HBO.
Obviously, hereditary cancer encompasses so much more than breast and ovarian cancers, and many other mutations besides BRCA are involved as well. And of course, hereditary cancer impacts men too.
I wrote about the needed name change here.
Wednesday, September 29th, is Previvor Day. Some people minimize the experience of Previvors. Suffering is not a competition. Minimizing what others go through is never okay.
You can read about some of my sister’s Previvor experience here.
I am pleased to feature a piece by online friend Georgia Hurst. Georgia is a Previvor and as her bio mentions, she’s a fierce advocate working hard to educate others about Lynch syndrome. I know you will appreciate her piece. Be sure to leave her a comment or ask her a question at the end of this post.
Thank you for sharing your voice at Nancy’s Point, Georgia.
I am a Previvor with Lynch syndrome
by Georgia Hurst
Many people want to know what they need to do to become a patient advocate for their disease or syndrome. I do not think there is simply one path to advocacy and like most things, it’s complicated.
Honestly, I never initially intended on becoming a patient advocate until I found out that Lynch syndrome runs in my family. My brothers have been affected by colon cancer; the oldest died from it at 36, the other lost his colon at 48.
Lynch syndrome is the most common hereditary cancer syndrome. I am at increased risk for developing up to a dozen cancers. Thankfully, through genetic counseling, genetic testing, prophylactic surgeries, frequent scopes, and a daily dose of aspirin, I have mitigated my risks of developing cancer thus far.
Ten years ago, I underwent a prophylactic hysterectomy and bilateral salpingo-oophorectomy and suffered terribly as a result. I was angry that I had to have my ovaries removed to reduce my ovarian cancer risk and wanted to vent and write about it in hopes of connecting with someone else who had a similar experience.
Having my ovaries removed and not receiving enough hormone replacement therapy was problematic and affects the quality of my life. Everyone minimized how instrumental my ovaries and estrogen were to my overall well-being. I knew I could not be alone in this situation, especially since multitudes of women have had genetic testing for hereditary cancer syndromes.
We are made to believe “knowledge is power,” especially if we have the good fortune of not having cancer and can undergo genetic testing. Still, that knowledge is only power when it is actionable.
To assume any control over our genetic destiny, we must bravely take our healthy bodies and remove perfectly functioning parts such as uteruses, ovaries, and for some with BRCA, beautiful breasts to reduce our cancer risks. Medical professionals have little to no discussion that we will open ourselves up to a swath of other serious health issues with removing our ovaries.
At the time, many people on Facebook in the few Lynch groups available felt that Previvors were given a heads up with genetic testing, could take measures to reduce their cancer risks, and did not have any basis for complaints. Previvors did not have to suffer the horrors of chemotherapy and all the other unsavory issues surrounding a cancer diagnosis.
We have been deemed the lucky ones in the hereditary cancer realm. Just drink the damn knowledge is power Kool-Aid, suck it up, and do what you need to do to avoid getting cancer.
Certainly, others were going through the same thing, but where were they?
My advocacy for those with Lynch syndrome arose from my loneliness, frustration, and depression. So I created my blog, ihavelynchsyndrome.com. (It’s no longer live.) and began to write religiously about having Lynch and living sans ovaries from a young age.
A few weeks later, Peggy, a genetic counselor from UCSF, reached out to me and told me how thrilled she was to read my blog discussing my experience with Lynch syndrome. Soon after that, women with Lynch syndrome and BRCA began emailing me and sharing their similar experiences.
I was no longer alone.
However, I needed new perspectives and to learn to reconcile my diagnosis. Reading books about other hereditary cancer syndromes, genetics, and genetic testing only fueled my writing. I started using Twitter to promote my blog and noticed the lack of presence on Twitter for Lynch syndrome.
I registered the #Lynchsyndrome with Symplur and began using it as much as possible. I followed the experts on genetic testing, genetic counselors, research hospitals, nonprofits, and other advocates. I also noticed how supportive and connected the #BRCA community was on Twitter.
Organized, social media savvy, and highly influential advocates Amy Byer Shainman and Lisa Guzzardi taught me how powerful Twitter could be. I wrote a piece about Lynch syndrome and its similarities with BRCA, and the BRCA community ran with it. They supported my work and allowed me to piggyback onto the #BRCA with #Lynchsyndrome. People began reaching out to me every day for help, and the blog eventually evolved into a nonprofit — genetic testing companies sponsored the mission.
There is a lot of misinformation online about Lynch syndrome, BRCA, and hereditary cancer in general, specifically on Twitter and Facebook groups. So, I partnered with Amy and President and CEO of My Gene Counsel, Ellen Matloff, and we created #GenCSM, Genetic Social Media, part of the cancer tag ontology, a reputable source of information on Twitter for hereditary cancer syndromes.
People asked me to write for their blogs; genetic testing companies asked me to write for their sites, advocates asked me to write pages in their books, and then The National Academy of Sciences invited me to the: Genomics and Population Health Collaborative — I was invited to become a Stakeholder, where I would help conduct research, identify opportunities, challenges, and best practices to develop a framework for improving population health and disease prevention.
We created tool development, resources, and actions at the public health care interface to save lives and prevent cancer for those with hereditary cancer syndromes and wrote about our efforts in academic papers. I was beyond flattered and never imagined I would be involved in advocacy at this level.
Then, in 2016 Trump got elected, and due to threats of dismantling The Affordable Care ACT and GINA and the uncertainty surrounding preexisting conditions, the nonprofit lost funding. I was devastated. As a result, my advocacy efforts have changed and have scaled back quite a bit.
If you are interested in being an advocate, do things within your comfort zone but try to stretch yourself.
Read a lot, learn what you can about your cause, read differing perspectives, follow the experts in that field on social media, and focus on a specific area.
Consider starting a blog, pick a nonprofit you would like to volunteer for or write a book. You will be surprised with opportunities you never imagined.
Perhaps most importantly, you never know how many people you might help feel less alone.
Georgia Hurst is a fierce advocate for those with Lynch syndrome. You can find her on Twitter and writing for Curetoday.com.
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Had you heard of Lynch syndrome before reading Georgia’s article?
Do you have a question or comment for Georgia?
Is your family impacted by any sort of hereditary cancer?