How does having Lynch Syndrome affect your
CF? And vice versa?
For
those who are not sure what Lynch (HNPCC – Hereditary Nonpolyposis Colorectal
Cancer) is I will tell you. It is a
genetic predisposition to certain types of cancers. They include colon, anus, pancreas, brain, sebaceous
glands (skin), uterus, ovaries, bile duct, urinary tract, stomach and small
bowel. Basically the digestive organs
and some reproductive organs. (I have a blog post about it here: http://mycfjourney.blogspot.com/2009/07/my-colon-cancer-screening-visit.html I apologize for
the text, I have changed my blog layout since it was written!). My family carries the hMLH1 mutation, but
there are four total. A strong family
history means you should probably get tested for the gene. This quote from the print out I have will
help calm anyone out there that is thinking OMG my great granddaddy had colon
cancer, and that was it, in my family! “Persons at risk for HNPCC usually have
a family history of two successive generations of colon cancer or at least once
generation with cancer and one with polyps.” So if only one person in your
family has had colon cancer, passed the age of 50, and no one had has polyps,
chances are slim you have the gene. NOT saying you DON’T, just saying chances
are slim. And remember I am NOT a genetics counselor nor am I a doctor! If you are concerned that you may have this
in your family, talk to your PCP and find a genetics team to discuss your
family history with. They will tell you
if you need to be tested or not. My
family history is every generation has had colon cancer and colon polyps on my
dad’s mom’s side. This includes my dad
having colon cancer when I was 26 years old, and only a few months old. So I grew up with knowledge of both CF and
Lynch Syndrome (didn’t know the name of LS just that colon cancer was hereditary).
Lynch
affects my CF in a lot of ways. I need
to have yearly testing right now to be sure I am not growing any cancerous
cells in my body. Yearly I get
colonoscopies, thyroid ultrasound, upper endoscopy and a skin checkup. Having CF complicates my colonoscopies and
upper endoscopies. A prep for someone
without CF only takes the day before the procedure. If the procedure is on Thursday they stop
eating Tuesday night, clean out Wednesday and are nice and clean for
Thursday. Not for me. I need to stop eating Saturday night and eat
clear liquids/foods on Sunday. Then
Monday, Tuesday and Wednesday I have to clean out. And even with this I am not always “perfect”
but enough to get good results.
Lynch
has also played a significant role in my evaluation for a double lung
transplant. The team at BWH was not too
sure what to do with me. They had many
meetings and in the end decided I would be an OK candidate. Under the strict terms that once I am
transplanted, those yearly tests become six month tests. There is a much higher risk for cancer
post-transplant because of the immuno-suppressants so my risk will be even
greater than that. As it stands now with
my yearly colonoscopies, there are always 3+ adenomas polyps removed (those are
the ones that if left to fester can turn into cancer). My whipple done last July was done only
because the transplant team did not want to take the risk that I had
precancerous cysts on my pancreas. They removed
me from the list until it was figured out, and it could only be figured out by
doing the whipple. So I had to have this
huge surgery to be sure. I was lucky and
have had no real complications so I am fine with having had it done now and
thankful they were only CF cysts. I also
had a full hysterectomy in 2011 because of Lynch. Many years of reproductive issues coupled
with my desire to not pass my genes on to children led me to have all my
reproductive organs removed.
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