Opinions? Anyone else with this?

hbn74 · New User Joined: 13 Aug 2008 Posts: 1

First of all, hello to everyone and best wishes with all you are going through.
I was recently told that I am positive for the CDH1 gene. This means that I have an 83% chance of getting diffuse gastric cancer before the age of 80. We have a very strong family history of diffuse stomach cancer (linitis plastica), and my aunt who was most recently diagnosed and since passed away was approached for genetic testing.
The average age of onset for this disease is 38 years old, and given my family history it is recommended that I have a prophylactic gastrectomy fairly soon. There is NO reliable screening for this type of cancer.
I 34 years old, and having just found this out I feel as though I'm a little behind the eight ball. I have been lucky, because this is fairly new information and so far a rare genetic mutation, to have found a few people going through the same thing. But honestly, I'm still feeling really overwhelmed and a little scared.
I think I'll feel better when I know exactly what's going to happen and what my options are. Right now I feel sort of cornered... I have 4 kids that I'm worried I've passed this mutated gene onto and that I'll have to take care of through all the things I'm about to encounter. I feel like it's almost a certainty (83%) that I'll get the cancer... and the responsible thing to do would be to get the gastrectomy. This knowledge might give me the opportunity to watch my kids grow up, see my grandkids and live to retirement... which so far, no one in my family who has carried this gene has been able to do.
But I can't say that I'm not worried about quality of life afterwards.
Has anyone heard of this or does anyone have any opinions.

(a 40% risk of lobular breast cancer is also associated with this mutated gene... so I'm now getting mammograms and MRI's once a year for that)

brainman

hbn74, I am very sorry about your health concerns. I really do not know much about gastric cancers so cannot help you with information about that. What I can do is try to give you emotional support.

I was 38 when my cancer was diagnosed. It that time, I had to elementary school age daughters and a 3 year old son. In my case it was not 83% chance of getting cancer; it was 100% certain that I already did so I know the fear of looking at three children and wondering if I will live long enough to see them graduate from High School. My son just graduated May 2008.

I often tell this to people dealing with "prognosis" issues: If my original prognosis had been correct, I would have died at least 5 years ago. I know that at this time you are overwhelmed by the news that you have a very good chance of getting cancer before turning 80. Realize that you could die of many other things before turning 80 as well. At one point in my journey I just had to tell myself that I could spend the rest of my life dying and living... the choice was mine. And so it is with you.

My point is not to make you feel bad about your fears. They are perfectly understandable fears. What I would like to encourage you to do is not to stay passively waiting.

1. Learn all you can
2. Make sure you have a good support system around you... including this forum.
3. Keep your personal affairs in order.
4. Love and enjoy those children as much as you possibly can.

Hopefully, others with more personal experience with this type of cancer will reply to your with their stories.

You are in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

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