Lynch Syndrome - This is for Owners and nothing to do with dog's!!

[Jennifer Martin]

We are joined together in friendship by our love of Setters, we are a world wide community, it is with this in mind that I am posting my message here and it is my sincerest hope you will take the time to read it.
15-20% of all Bowel Cancer is Hereditary, for the most part there are still many practitioners out there that are unaware of this!,

I am genetically modified with the DNA mismatched repair gene - Lynch Syndrome - (AKA) -  HNPCC - Hereditary nonpolyposis colorectal cancer there are a number of mutations of this gene basically it is Bowel Cancer with additions!.


 In my family we know it brings Bowel, Stomach, Endometrial and Skin, 
the genetic variations can cause almost any form of cancer from Brain,
Urinary, Liver, Kidney the list goes on.   


My niece who is a Consultant in Australia set everything in motion 6 years ago when she was considering starting her family and knowing that her Father my eldest brother had had Bowel Cancer in his late 30's, asked if he would be tested and it proved positive.
Since then -  my father died from complications following bowel surgery at the age of 84. Of my 6 siblings, 4 have the gene and have had cancer, one brother does not have the gene and another does not want to know!. Three nieces have
so far been tested with 2 proving positive, one niece has two young
children so we are now onto another generation!.

We know the gene has been passed down through my paternal Grandmother,

At the age of 55  - I have not had or at this time have cancer, I do however require annual check-ups - colonoscopies etc. 


The following is the definitive criteria on which diagnosis is based:
 

   Amsterdam Criteria:

• Three or more family members with a confirmed diagnosis of colorectal cancer, one of whom is a first degree (parent, child, sibling) relative of the other two
• Two successive affected generations
• One or more colon cancers diagnosed under age 50 years
• Familial adenomatous polyposis (FAP) has been excluded

There is more information on Lynch Syndrome International.
Or you can of course contact me.

[Teresa]

Thank you for sharing all this information with us Jennifer

[Jennifer Martin]

Thank you for reading it Teresa, I thought by putting it on here it would get the message out to people who might never look for information or think of this sort of thing until it's 'too late'.
Bowel Cancer is a silent killer and effects a lot of people many of whom do not realise that it can be genetic and have never heard of Lynch Syndrome.

[pat predeth]

thank you for being so brave in sharing this information with us I am people sure I speak for a lot of other Friends out there in wishing you well take care Pat x we lost my father in law this way,,we are now aware

[Jennifer Martin]

Thank you for your reply and comments Pat - it was my hope that by posting on here I could get the message out to a 'larger audience' - and spread the word and raise awareness to people who may never heard of Lynch Syndrome HNPCC, there are many who haven't!.
I think I'm on a bit of a quest!.
As I've had the gene since conception - I can't really claim to being brave - but thanks anyway! :)

[Jennifer Martin]

Time to share a few updates!
Lynch Syndrome International . C-3 poses the question - breast cancer and Lynch syndrome. This is exactly why it is so very important to be involved in many different registries, so they can get as many individuals as possible for studies because with numbers, evidence is difficult to dispute. Australia also is studying a cervical cancer link...if so, Lynch syndrome would be the most prolific inherited cancer in existence...we definitely need far more research http://fightcolorectalcancer.org/research_news/2010/07/is_breast_ca...

Is Breast Cancer Linked to Lynch Syndrome? | C3: Colorectal Cancer Coalition
fightcolorectalcancer.org
Although breast cancer has not traditionally been considered one of the cancers associated with Lynch syndrome, evidence is building that there might be a link.

[Jennifer Martin]

http://fightcolorectalcancer.org/research_news/2008/09/lynch_syndro...

[Jennifer Martin]

Hope you will extend me the courtesy reading my posts, there are many people who are unaware of the implications of this inherited condition, GP's included, it is still relatively unknown but there are many of us campaigning to raise awareness.
Bowel cancer is one of 'those' cancers that people do not want to talk about or are embarrassed by, - people get it through lifestyle, age onset and or past on genetically, not talking about it will not make it go away - talking about it will save lives. For more information please check out: Lynch Syndrome International on Facebook!

[eva ciechonska]

I have 2 friends with bowel cancer and had a vet who died of it. Non of them have family members, past or present, who have had it so, in this instance, it has not been genetically transmitted. You mention lifestyle and age onset. Could you please expand.
Only one of my friends smokes but has been told by his consultant there is no connection.
I wish you well and hope you never develop it.

[Jennifer Martin]

Bowel cancer is a silent killer, in the UK when people reach the age of 60 years old they are sent a testing kit which they take faeces samples for 5 days and then post back getting the results in 2-3 weeks or sooner this is to test for any minute traces of blood in the stools.
There appears to be a connection with consuming a large amounts of red meat, and research is being done into the chemical changes that happen when meat is cooked at high temperatures.
Anything that helps a quicker transient through the gut is thought to be helpful and resistant starches are being looked at. ie: Sweet corn, cold cooked potatoes, under ripe bananas.
Early onset bowel cancer - under the age of 40 years old is often an indication of it being hereditary.
I have been vegetarian since the age of twelve and do wonder if this could be one of the reasons I am still cancer free!.
As in all thing's I would think that anything done to excess be it eating, drinking or smoking, will at some time catch up with you in one way or another and I guess the more we know the less we understand!.

[eva ciechonska]

And long may it continue for you!!!
I wonder how much of a part insecticides chemical preservatives and additives play in the increase of cancers? Also disinfectants, anti-bacterial washes etc. I am sure their contribution is far greater than we are led to believe.
Are you even careful with your vegetarian diet? Do you eat only organically grown foodstuff?

[Jennifer Martin]

Never really been a lentil eating vegetarian, I don't eat soya or anything that's produced to look or taste like meat, I stopped eating meat when my horse died and have had no desire to eat it since, I just don't like it, - I haven't gone down the organic route and probably do not eat as healthily as I should!
Here's the article on the meat / cancer link.

http://fightcolorectalcancer.org/research_news/2010/08/colorectal_c...

[Teresa]

If you ever have the chance, go organic! appart from the health upside, the flavours are completely worth it(I recently became a fan, it all tastes more and better...)!
Thank you very much for your updates on this subject, it is valuable information, and i agree that it should be as spread as possible.