I think I've been needing for your blog for a year. Glad to have found you. Not many people understand the stress/worry/guilt of being a previvor. Yes, I know we are lucky to know we have Lynch and that we can prevent many cancers and cure them when we find them early - which we probably will do. But it is nice to know that there are others like you, because nobody I know in real life "gets it."
I received this email a few weeks ago. Thank you, AnEmily, I'm glad you have found me, too. Ever since I've decided to give Lynch syndrome a much needed voice, I have met a lot of people: doctors, genetic counselors, cancer advocates, cancer survivors, etc. I religiously read the various platforms where cancer survivors discuss their lives without their body parts or the treatments which they've been subjected to and how it affects them. I wish people would be more candid publicly about the reality about some of the things they've experienced. People who need to make important medical decisions need to be privy to all of the issues which may present themselves because obviously these things hold huge implications for one's quality of life. The most important thing I have learned is this: Just because you're alive does not mean you're living.
When I tell people I have Lynch syndrome and frequently blog about it, I occasionally hear some pretty unmindful things. At the risk of being provocative, below is a list of my faves:
All you have to do is have prophylactic surgery and get screened and you'll be fine. Well, I had my prophylactic hyster/ooph and have felt anything but fine since. Yes, I know, I significantly decreased my chances of cancer to my repro organs, that's fantastic, but frankly my body is not the same. Furthermore, I'm still at risk for about another dozen cancers; our body parts serve a purpose and life without them is difficult. You may be preventing cancer on one hand but you're also subjecting yourself to a host of other health issues by removing body parts. Most do not want to publicly talk about those pesky health implications which may follow suit after prophylactic surgery -- people need to be aware of the entire picture -- not just part of it.
Whilst we're on the subject of screening...just because someone is genetically tested for Lynch syndrome does not mean they have access to stellar medical care or have access to medical doctors who know their shit. Most doctors don't know much about Lynch syndrome and aren't familiar with the screening protocol. Besides, frequent screening does not ensure that they we won't be diagnosed with an incurable form of cancer.
Having Lynch syndrome is not a big deal, you'll get used to it! We all have genetic issues.
Discovering you have Lynch syndrome can be highly traumatizing and requires a long emotional journey which hopefully will eventually lead to a reconciliation of the diagnosis. Everyone is unique, lives are complex, therefore the journey will vary for most. Some of us with Lynch can't help but occasionally feel like walking-cancer-time bombs...and don't tell us heart attacks run in your family. I would much rather die quickly than from a slow, painful, agonizing death.
"It's God's plan," or "It's in God's hands.
Not everyone subscribes to your theories on God. Unless you are in church, please do not assume everyone shares your religious belief system. Besides, it has the potential to sound as though one is not taking responsibility for their life. We have more control over our lives than many give us credit for and we all should exercise that ability more frequently.
You're lucky you know you have Lynch syndrome!
My all time favorite. Makes me want to slap you. Chances are that if you know you have Lynch syndrome, someone in your family has died from one of the Lynch syndrome related cancers. Chances are cancer has afflicted one or more of your relatives in various ways and you have had to watch them suffer and die and now live life without them. Chances are you have children to fret over about whether or not they, too, have Lynch. Sorry, I don't feel so lucky. Lucky are those who test negative for this deleterious gene mutation.
I consider myself warned, not lucky.