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
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54

stircrazy · New User Joined: 20 May 2008 Posts: 4 Location: California

Hi HBN74,

not sure to what extent your gastrectomy would possibly be, but I had esophageal/stomach cancer; in May 2008 we removed the bottom third of my esophagus and some never quite clarified portion of my stomach. I am also 34.

Prior to this, I greatly enjoyed very spicy food, and the occasional dark wheat-beer from my favorite brewery in Germany. These were things I recognized I might never be able to enjoy again, but wasn't in the least bit happy about. I consoled myself with this being the opportunity to explore food, expand my palette...maybe something more French, with lots of butter.

Initially, this was definitely the case. I became the ultimate spice wimp, garlic and black pepper were too much for me, and forget about anything with the least bit of fizz. Very slowly, I've been able to reintroduce some of my old favorites (often toned down, no habanero for just yet!), and enjoy moderately fizzy beverages.

So as far as the long term quality of life affects on diet are concerned, I'm very very very happy with my results. However, my (wifes) research has led me to believe that this speed and degree of recovery is unusual (it's only been 6 months). Hopefully you will enjoy an equally good recovery, or better yet, my results are the new norm as a result of better medical know-how.

Dumping syndrome, though experienced, isn't much of an issue at all anymore (increasingly rare). But like I mentioned, no habaneros for me. Nuff said there. Embarassed

Sorry if I totally missed your concerns as to what impact on quality of life are concerned. Surgery is no fun, and I formed opinions on everything from incision infections to pulmonary embolisms. You get past it, and things improve from that first day. Very Happy

Please clarify if there's some other concern I didn't address that you may have. I think the poster above me, brainman, had an excellent response and was able to address some areas outside of my experience.

Stay strong!

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