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!
Hi. I am glad that I came across this page by accident. In 1994 had a subtotal gastrectomy I was 34 years old had my annual check ups and never had any issues I had thought that that was the end of the story.. Six months ago doctors found that my cancer returned and I needed to have my stomach removed. Had chemo prior to my surgery and now I am at home recovering from it. My search to get the proper nutrition to feed my immune system never stops now. I am glad I can get feedback from other people that have had stomach surgery.
I had the pleasure to speak to some of the no stomach for cancer staff at moffitt's conference in tampa. Since then I have been on a mission to spread awareness about CDH1 genetic testing and stomach cancer. In addition to testing positive to CDH1 gene mutation. my younger sister is also positive. We are both in process of getting the necessary scopes, scans and preparation work prior to scheduling a TG surgery. I met with some fantastic doctors at moffitt that are helping me and pointing me in the right direction in my journey. I'm hopeful to schedule a laproscopic surgery this week. I want to thank you again for the kindness and support you provided at the conference.
I'm very excited to have a TG surgery hopefully in August. I'm trying to reach out to blood family members about CDH1 gene testing. My prayer is that each person will have the same opportunity to make a decision for their health that i did. This valuable support that you provided me is going to save lives in my family including mine!!!!
I love you guys and are thankful for your passion to spread awareness about CDH1 and gastric cancer. God bless you all!!! God is using your voice to spread this important message to the world!!!
Review from Guidestar
There's nothing as surreal as being told that you have cancer. Unless it's finding out that you also carry a genetic mutation that gives you a >80% risk of developing gastric (stomach) cancer and that the only recommended preventative treatment is a total gastrectomy - removal of the stomach. Luckily for me, my genetics counselor recommended I visit the No Stomach for Cancer website to learn more. The website is jam-packed with information, resources, and stories that helped me better understand my diagnosis and treatment recommendation. A few months later, I attended a NSFC symposium which welcomed experts and speakers from around the country. I met and talked with NSFC staff and board members (most of whom were already stomach-less) and they helped reassure me that life and the love of food can continue without a stomach. I am now two months post-gastrectomy and on a good path for recovery. I truly credit the NSFC with helping me and my family approach my diagnosis and treatment confidently, knowing it was the right decision.
I found No Stomach for Cancer after losing my 24 year old son to Stomach cancer. What i really liked about the organization was it's recognition that people die from stomach cancer and NSFC encouraged people to share their story. It was a website that I found that was easy to read but gather information.
We have since sponsored 2 soccer related fundraisers in my son's memory and the funds went to NSFC. I appreciated that a board member called us to thank us for what we did.
So glad to say that this organization is and has help me and my family become more knowledgeable and aware about cancer. My mom was a 1st in our family an ordeal I wish no one. There needs to be more stomach awareness. Please pay attention to your body. My mom had stomach pain was in and out of emergency hospitals only to tell her she had acid refex or GERD. That all started September 2013. After all that her ordeal was confirmed April 10th 2014 stomach cancer stage 3 curable but with insurance referrals and waiting for appts it metas to her liver putting her at stage 4. Chemo could no longer help. If she continued she would just have all symptoms and for what no quality of life. She didnt want that. Some would say that when they pass they lots the fight. I see it as she move on to a better journey of eternal greatness. Tell we meet again mommy i love you forever and alway.
I found No Stomach for Cancer, Inc. after researching information regarding genetic counseling and inherited gastric cancer. I had the CDH1 testing done after my son's physician recommended it. Both my father and brother had gastric cancer and the information from this site has been invaluable. I did test negative for the gene but am continuously inspired by this community and all that they do to strongly support one another. Thank you for your continued research in this area and the important information you are communicating to the world.
No stomach for cancer was and has been wonderful at helping spread the word and knowledge of current statistics about stomach cancer! Their Facebook page has tremendously helped me! We just approached our one year anniversary of losing my mother in law to this horrible cancer! Through the FB page I am able to relate to other people who have gone through the same or are going through the same grief we have endured but more importantly they are trying to help fight this cancer by raising awareness and hopefully to allow more research! I'm thankful for being able to stay updated through their website and FB. It is my go to place when I need to do more than grieve!
This organization is wonderful at spreading awareness and raising funding for stomach cancer. They've worked so hard to get the word out and educate the public about this disease that takes so many lives. I've watched them go by leaps and bounds and accomplish so much. They've been so supportive, especially when my sister was diagnosed with stomach cancer.
When my mom was diagnosed with stomach cancer and I wanted to see if there was a way to arrange one last vacation for her in spite of her feeding tube, I scoured the internet for any possible resource, not knowing where to even begin. I found No Stomach for Cancer, emailed them, not expecting much, and was contacted the next day. Someone called, talked to me for a long time both asking questions so they could make some contacts for me and just talking and asking about my situation. She invited me to join the Facebook support group and sent me t-shirts and bracelets and told me to contact her if I needed anything else. So comforting and helpful when I was feeling very upset, confused, and uneducated. I'm so glad they do what they do, and I'm so touched they were willing to go well beyond that to try to help me.
Stomach cancer didn't have much of a voice until now. No Stomach for Cancer, Inc supports stomach cancer research and public awareness.Stomach cancer is the second leading cause of all cancer deaths in the world, yet far too little is known in the medical field and general public. Lives are needlessly claimed because the medical community is failing the victims of stomach cancer. This organization is working to change all that. It has been a Godsend in caring, supporting, and advocating for those of us affected by stomach cancer. In four short months, I lost the love of my life to this dreadful disease. Like so many, he was repeatedly told by doctors that he should just take antacids, and prescribed antibiotics. He left behind a family, including five beautiful children. We miss him dearly.
They are wonderful people! Someone to talk to, count on, and share with. A Help to people like me who have no one to turn to, to talk to about my husbands cancer. I can learn and share stories and know I'm not alone. And Yes, I donated to them instead of the ALS for the ice bucket challenge. They deserve a lot of recongnition!
My grandma passed away December 16, 2012 from stomach cancer. I wanted to do something to honor her and I've been working with No Stomach For Cancer to organize a walk here in Utah. They've been so amazing to work with and I want to help them continue to bring awareness to this horrible cancer.
I am a current cancer patient. Gastric cancer research is very badly underfunded, and this cancer does not get the recognition it needs. More often than not, this goes undiagnosed and untreated leading to poor prognosis. This has been thought as a disease that afflicts only older generations, but that is completely false. Many young, otherwise healthy, people are being devastated by this terrible disease, and any organization that shines a light on it is to be applauded. Awareness and early diagnosis are key to beating this monster, and NSFC is providing much needed visibility.
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.
After testing positive for CDH1, my geneticist told me about NSFC and it has been a great resource of information and advice. I have not yet decided to have a total gastrectomy but the blogs and posts on what it is like have been a great resource so far!
I heard about NSFC from my doctor after I tested positive with the CDH1 gene Mutation. It has been a huge resource as I've gone through the process of having Total Gastrectomy. The information and stories of others are real and have given me comfort and have prepared me for this life changing journey. Thank you No Stomach For Cancer for being there!
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..