Monday, August 20, 2012

Lynch Syndrome

So most of you know the story of going to take care of my aunt with cancer. But one of the details I haven't talked about, mostly because it is so peripheral to the 'what needs to be done now' domain, is one of the details of her illness.

They suspect, based on family history, which I didn't fully understand until now, that she had something called Lynch Syndrome.

What it is

A genetic disorder, in short. Cells reproduce themselves, yes? Well we have a protective cell function whereby they RECOGNIZE if the cell they reproduce isn't LIKE them and destroys them... mutant destroyers. In Lynch Syndrome there is a failure of cells to murder those unlike themselves... which sounds all nice and all, but SOME... in fact possibly MOST of those mutant cells are cancer cells. I don't mean that in a judgmental, mean way... it's just how it is. Cells like to breed others that are like themselves and in the case of cells, that is probably for the best.

The Effect

One in five people is destined for colon cancer. Did you know? Among people with Lynch Syndrom, 60%. That is triple the chance. Lynch Syndrome is most commonly associated with colon and reproductive cancers for whatever reason, though there is a slightly elevated chance of other cancers as well.


At least three people in two successive generations, one of them first degree, with cancer.

See... the PROBLEM... as an only child I have no SIBLINGS to the first degree... and my PARENT on this side died at 31 of a car crash... well before the age he was likely to have gotten cancer. The age is early—50s, they say, but not THAT early. So I will never meet the technical qualification, even if in reality, I may very well be in line.

I COULD just get the genetic test done, but here's the rub... I not only have to pay up front for the test. I then have to pay higher premiums for having a pre-existing condition... financially, it is not better to know.

But See, That's Not So Bad.

Why? Because all testing positive does is earn me the nudge to get screened more often. It ISN'T so often my insurance won't allow it (especially once my doctor documents possible risk). So while a portion of me hates not knowing, I am just going to act like I have the gene... (lack the gene? Am a mutant? Whatever it is... am genetically pre-disposed).


Old Kitty said...

Oh Tart. The more I read about health care in America, the more I despair. Everything is paid for privately and the level of care is up to what kind of insurance one has or how much money one is able to spend. The blogosphere is haemorrhaging with so many US bloggers needing donations to help with cancer tests, medications, etc, etc. :-(

But I digress. Is it only financial considerations that is stopping you from getting this test? You are a braver person than me. I'd want to know for certain.

I hope you are ok within yourself. I'm so sorry about all this. Your health and peace of mind should not be left to the whims of fiscal constraints. Take care

Elizabeth Spann Craig/Riley Adams said...

It sounds like you're approaching this really well. I'm so sorry, though.

Aren't there kits that you can send off for that don't report into insurance? Just wondering.

Jessica Bell said...

I'm so sorry to hear this. I don't know much about health insurance in the Us, but I do know that it leaves a lot to be desired :( I hope you can sort it out. Is it really expensive to get the tests done privately?

Jessica Bell said...

Oh ignore that. Just realised you have to pay higher insurance rates on top. GOD. REally? I'm so sorry!

Hart Johnson said...

Kitty-yeah-I hate our system. And I hate that so many people fight so hard against doing anything to improve it. Obamacare theoretically will remove the pre-existing condition clause, but I worry about it being reversed, at least in the short run.

Elizabeth-yeah, I feel fairly analytical about it at the moment... CONSTANT VIGILANCE, eh?

Jessica-Yeah, we are definitely a mess. My current insurance is pretty good, but I don't really want to be in a position where I can never change jobs (hell, I want to just write books some day!)

Talli Roland said...

Oh, Hart. I'm so sorry to hear that. Can you move to Canada? Maybe? (Sorry for the humour... couldn't resist). The whole situation sucks - can't believe that in top of having to pay for the test, you also need to pay a higher premium! Ridiculous.

Michael Di Gesu said...

Hi, Hart,

Gee, this totally sucks. I understand your frustration. Cancer is such a horrific disease. I have lost almost ALL my family members to it in one form or another.

The key is to catch early, but if testing is so expensive. Who can do it? Right?

This is where taking care of one's health by eating right and exercise certainly can help. So many different factors trigger the cancer gene. It could be ANYTHING that triggers. We all have dormant cancer cells.

But, I'm with you though. Just live your life with constant vigilance and hope and pray for the best outcome.

J.L. Campbell said...

I'm sorry to hear this. Talk about being caught between a rock and a hard place. Hope there's some way you can get through this without going broke.