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!
I do not have a stomach, in 2017 i had Cancer of the oesophagus, anyway i was supposed to have a part of it removed and the top of my stomach and the lymph nodes removed, which happened but the surgeon who was going to do it was on holiday, and because the op had to be done within the chemo window i had to have it done on Saturday 22nd July 2017, so the surgeon who did it was a bariatric surgeon who specialised in keyhole surgery, my original surgeon was going to do it open, but this stand in surgeon convinced me that keyhole would be a whole lot better for all kinds of reason so i agreed and it seemed to work and quite quickly the moved me from the ITU to a ward, apparently i passed all the tests, my partner came to see me and as the hours went on he realised something wasn't quite right, and within hours my chest had turned black, i cannot remember anything about all this, but at 3am on the Monday morning the head of upper GI called my partner saying that he had had to rush me back into surgery and remove my entire stomach and majority of my oesophagus because it had gone gangrene due to the main artery to my stomach getting blocked (if it had been done by open surgery it would have been spotted, downside of keyhole) , any how as a result of this gangrene i got sepsis of the lungs that tore them apart and i had to have stents fitted to fix my lungs, i was then in a coma for 8 weeks and they were preparing my family for me to die, i eventually got out of hospital in early October 2017 after having to learn to walk again, i had a stoma bag fitted to my neck for fluids, and a feeding tube in my jejunum, when i came out of hospital i was in and out of the local hospital with chest infections due to the stents getting infected, i eventually had them removed in April 2018 and they said one of three things could happen 1) the tears could be fixed (which they doubted) 2) the tears could still be there and the stents needed replacing and 3 ) i could die so my theory was i wasn't supposed to be alive so i told them to do the op knowing it might kill me, but strangely option 1 was the outcome the least expected. I still had the stoma bag and the jej tube until i had my reconstruction op in Feb 2019, the op was called a colonic resection, where part of my colon was removed and put in place to act as my new oesophagus. My problems are very much like what you are all suffering, i.e. dump syndrome, reflux that ends up with aspiration of my lungs was in hospital twice in August with IV antibiotics to shift the infection, but i think i have it again, my hair falls out, my skin is flaky and dry, i have skin peeling off my feet in sheets and lots of pain, i have to take Creons (pancreatic enzymes) with meals that helps the pancreas digest my meals apparently. Before i had my resection i got admitted to hospital to have my appendix out, now i am waiting to have my gall bladder removed (i am on morphine til they do this but its not causing any blockages so no urgency as yet, so with covid everything is delayed, i seem to have excess space in my abdomen area í ½í¹‚ I had a bout of diarrhea which was black so my docs did a sit test and found it was blood they took a 2nd one and i thought it looked ok but they said there is still blood so i am now waiting for a colonscopy as well, as you can imagine i do not feel well BUT all my stats and bloods are fine so thats all they worry about, and i did drop from a UK size 22/24 (US 18/20) to a UK size 8/10 (US 4/6) but i have gained enough weight now to be a UK size 14 (US 10) So i am obviously eating enough to stay healthy, plus i take multi vitamins just to make sure. I now want to go on a diet but as my eating problems are getting to me i think i may end up not eating for a while and losing weight.
Sorry for the long story but i thought i would explain my situation.
I am in the UK and under gthe care of Mr Maynard at the Churchill Hospital in Oxford.
My husband was diagnosed with stage 4 gastric cancer on January 14. Iâ€™ll never forget that day. We got home from his appointment at 7 pm and I was lost. Someone gave me the information about NSFC and the director took my call at 9 pm that night. My husbands cancer is extremely rare. Did I mention he is 39 and we have two babies? Because of NSFC, I was emailing the top doctors in the states the day following diagnosis. On January 14, the oncologist told my husband he might have 6 months. Itâ€™s been 10 so far, and NSFC has contributed to every single day we have together.
My twin sister, my niece and myself tested positive for CDH1 genetic mutation. Within 5 months all 3 of us had total gastrectomies with malignant pathologies, despite having benign diagnostic test results prior to our surgeries. Our siblings and children have yet to get tested. Through continued research itâ€™s my hope that the generations that follow us have more precise diagnostic screening, more treatment options, a higher survival rate and a cure.
The information, support and guidance from No Stomach For Cancer has helped us along our journeys learning to live without a stomach. This site has assisted us with our decisions and have allowed us to survive.
Review from Guidestar
Before joining the board of directors, I had a great experience with No Stomach for Cancer. In fact, they helped save my life. I was diagnosed with a rare gene mutation that causes cancer and No Stomach for Cancer was the only place I found good information about treatment. They even helped me connect with an expert doctor to discuss options.
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.
Great organization helping get the attention out there about 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..
The information that I obtained from the No Stomach for Cancer Website and from it's founder has been invaluable to me. After losing two close family members to stomach cancer and having two members with lobular breast cancer, I came upon this foundation and realized that there was a genetic component to all 4 of these cancer cases. I, subsequently, was tested for CDH1 gene mutation. After finding out that I had the mutation, I had a total gastrectomy. The personal stories on the NSFC website helped me navigate my recovery.
I discovered NSFC when my father was diagnosed with gastric cancer and then found out he carried the CDH1 gene. My father was having issues after having his stomach removed and I reached out to NSFC for some advice. Somebody got back to me within 10 minutes. She was extremely helpful and sympathetic. My father passed away a year after his diagnosis. I found out I was positive for the CDH1 gene 2 weeks after my dad died. 5 more family members are carriers of this gene. NSFC was our saving grace!!! It was so helpful to talk to others who have gone through what my family was going through. So far, 5 members in my family have had a prophylactic total gastrectomy. NSFC prepared us so well for surgery and helped us find the best surgeon. They were there for us when we had questions after our surgery. I would strongly encourage anyone going through this to reach out to NSFC. I couldn't have done it without them!!!
I donated to No Stomach for Cancer, Inc and participated in the November 2, 2013 walk for my husband who passed away from stomach cancer.
I wonder where all the money goes? What research is it donated to? The only mention I could find was a 2012 tax report saying 20,000 went to the University of Otago, New Zealand. At that site I could not find what was being researched for gastric cancer.
It is a good site for connecting to others going through gastric cancer, survivors and caregivers. Plus it offers a wealth of information. But, I would like more availability of information on where the money is going.
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.
I have been diagnosed with the CDH1 gene which increases my chances of having stomach cancer to about 80%. My father and uncle have both passed away from Stomach cancer and my other uncle and aunt have both had their stomachs removed as a result of cancer. Due to the poor detection of stomach cancer through endoscopy, it is advised that those with the CDH1 gene have a total gastrectomy (removal of the stomach) which eliminates all risk. Based on our strong family history, I have elected to have the surgery. During my research of this gene I came across the NSFC website and have found it invaluable!! It gives factual information as well as personal experiences from others who have had TG and the opportunity to take part in discussion forums. I access this website on a weekly basis and will continue to do. It is very comforting to find such a site when diagnosed with this quite rare but deadly gene and to hear the experiences and receive the support from other members
Our 22 year old son Tyler was diagnosed with stomach cancer on December 30, 2009. In January 2010 we found out that his cancer was terminal. Tyler was a four year medal winning swimmer for the University of Wisconsin Whitewater. His request for one last swim with his teamates and the special graduation ceremony that the University held for him made headline news in our area. After reading about his story Karen from No Stomach For Cancer reached out to us with information and support. Tyler lost his battle on February 11, 2010 just 6 weeks after being diagnosed. The No Stomach For Cancer organization has a wonderful tribute telling Tyler's story on their website. They worked with Tyler's high school swim team in December of 2010 to hold an event that would raise awareness of stomach cancer. They are working with us to provide information that we can use at an event in July to again raise awareness of this deadly disease. No Stomach for Cancer is a great organization that provides information and a support network for anyone dealing with stomach cancer.
No Stomach for Cancer is an amazing resource for people who are unfortunately affected by this horrible disease. They provide so much information regarding stomach cancer as well as help to unite people from all over the world to share their stories. My husband recently lost his 7 year battle with gastric cancer and this organization provided some comfort to me by being able to read the stories of others who have battled this disease. This cancer is so over looked in the real world, in fact there were no organizations and very little information available when my husband was first diagnosed in 2004. My hope is that No Stomach for Cancer will get the attention it deserves and in turn bring more funding to help fight this very serious cancer.
I found this organization when my brother was diagnosed with diffuse stomach cancer. I found their website to be a wealth of information and their community very supportive and empathetic. I posted several comments on their facebook page and the Chelcum family responded to all posts. I also communicate via email with the founder, Karen Chelcum and she and No Stomach for Cancer have become wonderful supporters during this difficult time. I lost my brother in March. My family hosted a fundraising event in May and we donated most of the proceeds to this organization. I support and look forward to No Stomach for Cancer's continued growth.
The summer of 2009 My youngest son complained of general abdominal discomfort but nothing that could be diagnosis. This went on thru the fall and early winter it just got worse with no one able to diagnosis what was wrong...Then Christmas Eve 2009 I got the worse news I think any mother ever can deal with. Ray was finally diagnosised with gastric cancer then we had to wait till monday to learn what type and what stage it was. That was 4 days away and it felt like a life time. Monday we were told it was signet cell adenocarcinoma of the stomach...any signet cell cancer is the worse to try to treat but we did. It was a long grueling time chemo was the only option because it had already advanced 9STAGE 4) and he had ascites. (fluid build up in abdominal cavity) He fought and lost his battle that August 10, 2010 thru this time it was suggested we have genetic testing done just to see...They drew the blood in February and said they would let us know, My dad had also died of gastic cancer about 10 years earlier. What a surprise in Feb. of 2011 when my daghter in law called to say she finally got Rays genetic test back and it was positive. It took my a few weeks to process this information but then I gathered myself and went to see the genetic testing doctor at our local hospital. So far three of my four adult childeren have recieved their tests and have been negative. I on the other hand am the carrier and came back positive. I have decided that I did not watch my father and son die horrible deaths from this awful disease for nothing ..I am having a gastrectomy next week to show my son Rays beautiful daughters they have nothing to fear if they do prove to be positive as adults and need gastrectomies (they are only 3 and 4 and can not be tested until they are in their late teens unless they get symptomatic) I pray they will find better screening in the next 10 years because without it having a gastrectomy is the logical alternative to prevent gastric cancer. I wISH I could do something to let all doctors be more aware of this killer of our young people. I am a nurse and my work brings across many people with gastric cancer and I wonder how many of them could be EChardin positive.
No Stomach for Cancer is a great way to network with other families and patients who share the same experience, decision-making, and struggles that my family does. I have learned from others and have made new acquaintances with people who truly understand what I'm going through.
I'm so thankful for that.