No Stomach For Cancer saved my life - literally! After I had genetic testing that revealed I carried a rare gene that gave me an 80-90% chance of developing stomach cancer that couldn't be detected through screening, my genetic counselor referred me to NSFC and told me not to look at anything else on the internet. Through NSFC I found the surgeon who removed my stomach as a precautionary measure, but after surgery we learned that I'd had four spots of cancer that hadn't been detected prior to surgery. Having lost both my father (who was diagnosed as stage 1) and my grandfather very shortly after their diagnoses, I know that this cancer would have killed me if I hadn't pursued genetic testing and learned what I could do to avoid cancer and who specialized in working with this incredibly rare gene. The people at NSFC are all incredibly supportive and helpful, and their website is a treasure trove of useful information. Thanks to them, I'm now 15 months post surgery and have a long, healthy life to look forward to with my family!
Without this community I would not have gotten through the past six months of living without a stomach after testing positive for both CDH1/HDGC and Stage 1 stomach cancer. This community and this organization is incredible.
My son died from undiagnosed Diffuse Gastric Adenocarcinoma (stomach cancer) 4 days after being admitted to the hospital with internal bleeding. He had many tests prior to this time and all were negative. After doing some research on line I contacted No Stomach for Cancer via e-mail with a question. I was immediately contacted via e-mail and then by phone. The people I spoke with and still have contact with gave me some great information, particularly regarding the CDH1 gene mutation. They also gave me the names of physicians and genetic counselors and how to go about getting the medical advice that my family needs to have. They also followed up with me to see if there was anything else they could do. Don't know what I would have done without their help and understanding.
As a total gastrectomy survivor after finding out I had the CDH1 genetic mutation, this organization helped through the pre and post surgical stages. They are awesome and more awareness is needed, especially as how my 2 children have a 50% chamce of carrying the same gene..
I have also been a member of the public, volunteer and donor for this organization as well, but I am writing this from a Client Served aspect. NSFC has been the most valuable resource for myself any my family since we discovered the CDH1 gene mutation for gastric cancer. While the organization greatly serves those with this particular gene mutation, it is equally appropriate and resourceful for anyone with any type of gastric cancer.
While I find their awareness and advocacy campaigns to be excellent and very important, I am most thankful for the grant money they provide for research into combating this very deadly form of cancer.
A few years ago it was discovered my family was cursed with a brutal form of stomach cancer known as CDH1. Our lack of knowledge of what we were dealing with meant the loss of two family members. To many doctors and consultants this hereditary form of cancer was unheard of.
The knowledge gained from No Stomach for Cancer has proved extremely valuable in maintaining the life for many family members. Stomach or no smomach, the knowledge my family gained from this organisation has saved lives for which we are all truely grateful. Without the knowledge gained many more family members would have died at some point during their life due to this cancer.
Karen Chelcun Schreiber ,the founder, is such an inspirational and strongly motivated person. Her endless efforts to acheive the organisations mission to increase awareness of this cancer is literally saving lives and providing great support to those affected. Karen establishes personal relationships with each family and its so good to see that her efforts are recieving recognition.
The Linstead Family cant thank No Stomach For Cancer enough and will forever continue to support this very worthy cause.
Two years ago, I discovered that a mutation in the CDH1 gene runs in my family and I tested positive for it. What this means is that I would face a extremely high risk of developing a stomach cancer that is so difficult to detect, it is usually not found until it's already in stage 3 or 4. It also puts me at a very high risk for a certain type of breast cancer. The best option for dealing with this risk, right now, is complete removal of the stomach, which is an overwhelming proposition. I've spent the past two years researching, debating, and just plain stewing over this decision. Without the help, advice, and connections made on NoStomachForCancer.org, I would be lost. This organization has made me realize, that although there are only somewhere around 100 families living with a CDH1 mutation, they are facing the same kinds of decisions I've had to make, and they are thriving. How many other families like mine are out there - families with a long history of cancer feeling that they are simply "doomed." Although learning of the scientific proof that I am at a high risk was difficult, I feel so much gratitude that I now know. And, although the best solution to this problem is a difficult one, I feel lucky to have one. I also hope that through organizations like No Stomach For Cancer, we'll be able to raise awareness so that future generations will have better options, possibly even a cure.
This site has been a great outlet for me in relation to my feeling like I can somehow impact change and assist others in their struggle to
make decisions and be supported through the process of either making a lifechanging decision or help a family member through it I joined after I had already been through all the decisions related to my familys stomach cancer but I wished this site had been around before I had to go through what I did as it would have made things so much easier especially in relation to getting current factual information I have been able to referr many others to this site for help that they sometimes aren't getting from Their current health care provider due to their lack of knowledge re current guidelines for stomach cancer and genetic testing
Back in early 2010, I was diagnosed with stage 3 stomach cancer at the age of only 34. At the same time, I was told that my stomach would need to be removed, and i would likely need to undergo aggressive chemo for a period of months.
From one second to the next, I went from being an extremely physically fit individual, to being defined as a cancer patient with a bleak outlook. Being told that my stomach would be entirely removed was obviously an enormous shock. I knew of partial gastrectomies, but total gastrectomies was new to me.
I decided that information was the key for me. I had to understand what lay ahead of me, so I went surfing!
Unfortunately, I only found negative information in blogs. Information about gastrectomies, and surviving gastrectomies was limited and / or negative. It wasnt overly helpful. Regardless, I went in to the operation in a positive frame of mind!
After my operation, i discovered NSFC. I found this site very useful, and my only regret was that my early searches didnt link me to this site. The best thing for me about NSFC is that it helped me to understand the science behind my illness, and linked me to numerous resources, which have answered most of my questions. In my case, it is clear that the cancer was genetic, and my family now understand exactly why generations of members have been dying young. My experience, linked with the information from NSFC will ensure that I will be the last in a long line of generations to suffer the effects of an advanced stomach cancer.
My brother recently was diagnosed with stage zero cancer and had a total gastrectomy. He was back at work within 5 weeks. This is a smaller layoff than some sporting injuries, and is all due to our family now being aware of the illness, how to search for it, and how to manage symptoms. This can be directly attributed to the support received from Karen and the crew at NSFC.
NSFC hasn't answered all of my questions. It is impossible, as the science is in its infancy. Only time will answer many of these questions, but I am confident that with each new discovery and experience, NSFC will continue to publish it, and will continue to be an important resource for the thousands of people out there like me.
Thank you NSFC!
Cheers from a sunny Austria!
Thank goodness for this organization and to Karen Chelchun. I am a nurse and began to speak to one of my supervisors about some medical concerns I was having about my stomach. She got me in touch with Karen and she in turn directed me to the very people that could help me. Both of my grandfathers and an uncle had died from stomach cancer years ago. Through this organization, I learned that there is a specific kind of gastric cancer which is hereditary. I am now in the process of genetic testing. I tell everyone I can about my experience and hopefully they will pass it on to others. I wouldn't have had any knowledge of this without this organization and to Karen who helped to start it due to her own diagnosis. Blessings to her and to all those who will be in need of help. This organization is the one that will give you the direction and courage to overcome this specific cancer.