PORTUGAL - May 23, 2016 - The group of João Sanches from the Instituto Superior Técnico at the University of Lisbon, in collaboration with the group of Raquel Seruca from I3S/IPATIMUP in Porto, has developed a new, simple and effective assay to study the impact of cancer related molecules in intercellular organization.
Intercellular adhesion is crucial to maintain normal tissue architecture and E-cadherin is vital to assure that neighbouring cells cluster to each other, establishing a correct epithelium. When E-cadherin does not function properly, cells become loose and the tissue becomes disorganized, which is a typical property of cancer.
This knowledge allowed the researchers to develop a new bioimaging strategy, based on the study of cell meshes organization, in order to infer the pathogenic value of E-cadherin mutations associated to cancer.
The process uses microscopic images from cells, where nuclei are used as central points to design a mesh of triangles representing the structure of adjacent cells. Upon this step, quantitative metrics exploring the area and the angles of this “artificial network of triangles” could be extracted to verify the impact of E-cadherin mutations on cellular organization.
The authors of this work verified that this swift, elegant and user-friendly method is able to distinguish cancer-causing E-cadherin mutations, associated to very aggressive invasive tumors, from those protein variants that do not cause any increase in cancer risk.
The results of this collaborative research yielded a methodology which is extremely accurate to study cell-cell interactions, and it represents a new opportunity to study a wide range of proteins that may impact tissue arrangement. Further, it can be used as a new platform to test new drugs that may promote a tighter adhesion between cells and may, thus, stop cancer cell invasion and metastization.
This work was supported by the United States nonprofit organization “No Stomach For Cancer” under the project "Today´s present, tomorrow´s future on the study of germline E-cadherin missense mutations".
Citation: Mestre T, Figueiredo J, Ribeiro AS, Paredes J, Seruca R, Sanches JM. Quantification of topological features in cell meshes to explore E-cadherin dysfunction. Sci Rep. 2016May 6;6:25101. doi: 10.1038/srep25101.
In the five years that I spent on the Board of Directors of No Stomach For Cancer, and as a member of our support team, I have talked to others who carry the CDH1 mutation about countless issues…. genetic testing, upcoming surgery, nutrition, life without a stomach… One of the biggest challenges, though, is not just the physical aspect of the diagnosis but the psychological/psycho-social issues as well.
First and foremost, most people feel lucky to have the information and choices, often choices that another family member did not have. Sadly, it is only after one or more deaths occur in a family that the CDH1 mutation is discovered in the family.
Many people have total gastrectomies- complete removal of the stomach- and, thankfully, do not require any kind of treatment. They have to make the huge adjustment to life without a stomach, but, overall, they do not require lots of medicines; in fact, they might not require any, except some initial pain medicine shortly after the surgery. You look at some patients and would never guess they do not have a stomach. They look “normal,” healthy even. And while they might look healthy, even “great,” they might be far from that. As everyone knows, , looks are deceiving.
You see, what many people do not understand about those who have had their stomachs removed ~and those fighting other illnesses, too~ is that each day might be a struggle. Some days, it takes all one’s energy to consume enough calories to get through the day. It is not simply about putting food into your body or “just eating a little more;” it requires tremendous strategizing and effort,. It is the same way people often feel when they are trying to lose weight- it takes a great deal of time and effort. You can no longer just put something in your mouth and wait for the calories to add up. You have to pace yourself. Eating a food that you could previously inhale might make you sick now. Or, eating that food could make you sick one day but be totally fine the next day. If you have too many incidents during which you feel sick, you could find it easier not to eat. Meanwhile, your weight may be dropping and you may even be getting too thin. Because our society values thin, people tell you you “look great,” even though you look in the mirror and see someone who is struggling. Hearing well-intentioned people telling you you “look great” can make you feel even worse, almost like you shouldn’t be feeling bad, down, or anything negative.
Because you look healthy, it is very difficult for people to understand that you may still be really struggling…. with nutrition, energy, loss of what your life “used to be” when you had a stomach. While you are going through it, you wonder if you will ever be “normal” again. Will you be able to exercise, run, chase your children, return to your job that is physically demanding…. will you have the stamina to get through the day???
As weeks and months pass after your surgery and people go back to their normal lives, there is an expectation that you will too. And you do…. And while you might be going through your normal routines, it is extremely challenging both physically and emotionally. You are not the same. You are not wallowing in self pity- after all, you know you are lucky to be cancer-free, an opportunity that many of our loved ones were not given. You don’t want to complain, because you know how lucky you are. However, you desperately want to get back to “the way things used to be,” to the days when simple tasks like eating and working did not require all of your energy. You wonder if having this life-saving surgery was worth it. Intellectually, you know it was, though psychologically and emotionally you are not so sure.
One of the trickiest parts of all of this is that “everyone is different.” What works for one person might not work for another. It is trial and error with so many things. It becomes overwhelming and exhausting.
I have just touched on a few of the issues that impact those who carry the CDH1 mutation. I realize that we are all at different places in dealing with it. Some of us are in our late teens and 20’s while others are in their 40’s, 50’s, and older. Each age group has unique challenges. There is a huge difference having a total gastrectomy at 20 versus 50.
My hope is that it will generate some honest discussion. We always want to provide a positive atmosphere because we believe that having hope and being positive are important to one’s physical recovery when dealing with any kind of challenge. However, we are realists, and know that there are many for whom physical and emotional recoveries have been very challenging, negative experiences.
Madison, WI – May, 2015 – Papa Murphy’s of Dane County has announced that it will hold a fundraiser to benefit No Stomach For Cancer and its quest to support research and unite the caring power of people worldwide affected by stomach cancer. During the month of May, participating Papa Murphy’s locations in the Madison area will donate 10% of Wednesday sales to No Stomach For Cancer for every pizza purchased. This is the first year Papa Murphy’s has held the fundraiser and hopes to collect nearly $10,000 to benefit No Stomach For Cancer.
“Even if it’s only one person that benefits from this we’ll consider it a success,” said Mark Venditto, owner of the Papa Murphy’s in Fitchburg, Middleton, Madison, Waunakee, Oregon, and Verona stores. “I believe it’s our duty as a business in this community to help those in need of a helping hand. No Stomach For Cancer is the leader in raising gastric cancer
awareness and research; my employees and I are looking forward to this.”
“I cannot tell you how much our organization appreciates the generosity of Mr. Venditto,” said Jon Florin, Executive Director of No Stomach For Cancer based in Madison, WI. “His willingness to help us raise awareness and funds will go a long way to supporting the gastric cancer community and advancing research.”
Stomach cancer is the third leading cause of cancer death worldwide. Typically diagnosed at late stage, the 5 year survival rate for stage IV stomach cancer patients is only 4%, overall rate is about 26%. Almost one million new cases of stomach cancer were estimated to have occurred in 2012, making it the fifth most common malignancy in the world, with more
than 723,000 deaths annually.
About No Stomach For Cancer
No Stomach For Cancer, Inc. is a 501(c)(3) nonprofit organization whose mission is to support research and unite the caring power of people worldwide affected by stomach cancer. Serving families across the globe, NSFC advances awareness and education about stomach cancer, including Hereditary Diffuse Gastric Cancer (HDGC), provides a support network for affected families, and supports research for screening, early detection, treatment, and prevention of stomach cancer. Headquartered in Wisconsin and serving families across the globe, No Stomach For Cancer is a worldwide thought leader in stomach cancer awareness and education. For more information, please visit www.nostomachforcancer.org
About Papa Murphy’s
Papa Murphy's Holdings, Inc. (Nasdaq: FRSH) is a franchisor and operator of the largest Take 'N' Bake pizza chain in the United States, selling fresh, hand-crafted pizzas ready for customers to bake at home. The company was founded in 1981 and currently operates over 1,400 franchised and corporate-owned fresh pizza stores in 38 States, Canada and United
Arab Emirates. Papa Murphy's core purpose is to bring all families together through food people love with a goal to create fun, convenient and fulfilling family dinners. In addition to scratch-made pizzas, the company offers a growing menu of grab 'n' go items, including salads, sides and desserts. For more information, visit www.papamurphys.com. Find Papa
Murphy’s on Facebook at www.facebook.com/papamurphyspizza.
Featuring Leading Researcher Dr. Parry Guilford
[Madison, WI] -‐ No Stomach For Cancer is pleased to announce their “Spotlight on Gastric Cancer” event on Thursday, April 23 from 1:30-‐7:30 at the Temple University Center City Campus, 1515 Market Street in Room 222. The Keynote speaker will be Professor Parry Guilford, PhD, a principal Investigator in the Cancer Genetics Laboratory, University of Otago, Dunedin, New Zealand. Dr. Guilford is responsible for the discovery of the CDH1 gene mutation which has been identified in many families affected by Hereditary Diffuse Gastric Cancer (HDGC). Stomach cancers are the fifth most common cancer types worldwide, and the third leading causes of cancer death in the world.
HDGC is a rare form of stomach cancer that affects families that typically see several members diagnosed at early ages. Stomach cancer is very difficult to detect and is often not discovered until it is in an advanced stage. Because of this, carriers of the CDH1 gene mutation are advised to undergo prophylactic gastrectomy (complete removal of the stomach), much like BRCA gene carriers are advised to have mastectomy. Female carriers of CDH1 are also at increased risk of developing lobular breast cancer, so mastectomy is sometimes recommended for them as well.
Dr. Guilford’s presentation will cover the history of his HDGC research with families of New Zealand’s Maori tribe and discovery of the gene mutation, what is known about how the cancer starts and spreads, current guidelines for HDGC families plus updates on research that could involve new drug therapies, rather than surgical intervention.
In addition, the “Spotlight on Gastric Cancer” event will also feature a few HDGC families sharing their stories and a Q & A and roundtable discussion with Dr. Parry Guilford.
This event is being sponsored by Lilly Oncology and is free and open to anyone, however attendees must pre-‐register at www.nostomachforcancer.org as there is limited space. You can register for the event at this link…Spotlight on Gastric Cancer
Founded in 2009, No Stomach For Cancer is a 501(c)(3) nonprofit organization dedicated to facilitating research and promoting awareness about stomach cancer. The organization’s mission is to support research and unite the caring power of people worldwide affected by stomach cancer. Headquartered in Wisconsin and serving families across the globe, No Stomach For Cancer is a worldwide thought leader in stomach cancer awareness and education. For more information, please visit www.nostomachforcancer.org
by Jessica McAuliffe
Jessica is a wife and mother of five children. She is an attorney and owns her own photography studio. She lost her mother to stomach cancer in January 2005. Since then she has been trying to advocate for awareness and to spread the word so others have the opportunity for a better prognosis than her mother did so many years ago.
I didn’t know anything about Stomach Cancer that summer of 2004 when my mom was first diagnosed with stomach cancer. When my mom was diagnosed with stomach cancer I filled my heart with hope for survival. I did not know there was only a 4% survival rate for those diagnosed with stage IV stomach cancer. I chose to remain in the dark instead of becoming informed. I chose to believe all cancers were alike and that my mom could beat this cancer.
My mom was first diagnosed with advanced stomach cancer the summer of 2004. After 5 months of surgery, infection, and holes that would not heal, she lost her battle in January of 2005. The cancer spread too fast and her body just could not take any more.
I was with her the day she received her initial diagnosis. She had gone in for what we thought was a routine endoscopy because she was having a lot of gastrointestinal pain. Cancer is definitely not what I expected. The nurse asked me if I was okay and I did not know what to say. I was in shock and was still trying to process the ramifications of this diagnosis. To answer that nurse now: No, I was not okay, I was scared and did not know what or how to feel at the time.
I had just heard the scary word cancer. Though I was scared, I was convinced my mom would still be around for many more years. At the time I knew absolutely nothing about stomach cancer. I didn’t know she had such a slim chance for survival. If the doctors discussed the survival rates with my mom she never let on that it did not look good for her. She tried to remain positive and tried to convince us that all would be well.
I trusted my mom. I had hope she would beat the cancer. She went in for surgery and I was convinced she would come out of it just fine. She had 2/3 of her stomach and 1/3 of her esophagus removed. I figured they were able to remove all of the cancer. My mom still never let on that things did not look good for her.
In the beginning I did not realize how advanced the cancer already was. After all, she had struggled for years with gastrointestinal problems. She was supposed to have surgery and chemotherapy and then be fine. She was supposed to come home to spend many more years with us. How utterly mistaken I was.
After surgery she met complication after complication. The cancer was eating her esophagus, creating holes that would not or could not heal. Her body was too weak for chemotherapy. She finally came home to be with us Thanksgiving of 2004. When the doctor sent her home, I thought that meant she was on the mend.
What I didn’t realize at that point was that the doctors had done all they could do. The cancer was spreading too fast. Despite the fact the doctors pretty much sent my mom home to die she remained positive when she was around all of us. She knew it was a waiting game. What she didn’t know, and what the doctors didn’t know was exactly how much life she had left.
In January 2005 my mom went back to the hospital. It was then that they gave her the diagnosis of a couple weeks to a couple of months. Two days later she passed away with my dad at her side. It has been almost 10 years since she lost her battle. I still feel the sting of loss each day. I wish I would have taken time then to find out more and to prepare myself for what was likely to come. In the end it was harder to be misinformed and unaware.
I was not prepared for the possibility that my mom would not survive. Throughout the ordeal I found myself swept up in my mom’s enthusiasm for the positive. She was so determined that we think all was going to be okay. It isn’t until recently that I learned more about stomach cancer. Because stomach cancer can be hereditary my children and I are at risk. I am now more aware of the signs, symptoms, and risks than I was at the time my mom was battling stomach cancer.
WASHINGTON, D.C. (November 17, 2014) – No Stomach For Cancer Board Member Beth Lambert today participated in a national forum hosted here by the Otto J. Ruesch Center for The Cure of Gastrointestinal Cancers at Georgetown. Speaking alongside other patient advocates, including Michael Sapienza of the Chris4Life Colon Cancer Foundation, Elizabeth Hoffler of the Prevent Cancer Foundation and Sharon Brigner of PhRMA, the conversation covered a range of topics, including the importance of empowering and educating patients about the preventive measures that can be taken to combat GI cancers, as well as the need to drive effective communication among stakeholders in the health care community and beyond.
“Today’s event is critical to elevating the conversation around GI cancers,” said Lambert. “This year alone, 22,000 people will be diagnosed with stomach cancer, many of whom could have benefited from greater awareness and education. Events like this help raise awareness about GI cancer broadly, as well as provide hope for the future of treatment options for patients.”
The forum also featured other notable health care leaders, including Dr. John Marshall, Director of the Ruesch Center, Dr. Allen Melemed, Distinguished Medical Fellow, Oncology, at Eli Lilly & Company, John Castellani, President and CEO of PhRMA, and Dr. Jeff Allen, Executive Director of Friends of Cancer Research. Congressional staff members Wade Ackerman of the United States Senate Committee on Health, Education, Labor & Pensions and Paul Edattel of the Committee on Energy & Commerce, United States House of Representatives also participated in the event, outlining the public policy landscape needed to advance GI cancer care research now and in the future.
“Unlike many other cancers — all of which deserve the highest degree of attention and engagement — stomach cancer is in need of greater resources, research andawareness. Our goal is to make all three happen.”
Founded in 2009, No Stomach For Cancer, Inc. is a 501(c)(3) nonprofit organization dedicated to raising awareness about stomach cancer. The organization’s mission is to support research and unite the caring power of people worldwide affected by stomach cancer. Headquartered in Wisconsin and serving families across the globe, No Stomach For Cancer is a worldwide leader in raising awareness and advancing education. For more information, please visit www.nostomachforcancer.org.
James Turner, 43, lives in Northumberland, England and is married to Claire. They have two children – a boy aged five and a girl aged eight.
Both James’s mother (in 2000) and his brother (in 2011) died of stomach cancer. It was only after his brother’s diagnosis that James learnt about hereditary diffuse gastric cancer and the CDH1 gene mutation that puts you at risk of developing it. Before he had genetic testing, however, a biopsy taken from a gastroscopy at the start of 2013 suggested possibly cancerous changes. A total gastrectomy (TG) quickly followed in March 2013. Here he explains what happened next and gives his advice on how to live without a stomach…
“What this basically means is that you’re cured.” These were the words from my specialist nurse as she explained the results of the analysis of my stomach a few weeks after my operation. They had found multiple sites of pre-cancerous cells around the stomach lining. But by removing the stomach, they had removed the risk of this ever developing into stomach cancer. No stomach meant no problem. I just had to get well again.
And now, a year and a half since surgery, I think I have, indeed, broadly got well again. My weight hasn’t gone down for months. The surgery scar is barely there. And the worst of the eating problems have long since passed.
But it’s not been easy, that’s for sure. One of the hardest parts has been finding advice on the practical steps to get by. Of course, the No Stomach for Cancer website is a great source of information – particularly the blogs and stories from others in the same situation. But even here, you have to do a bit of rummaging to find tips to help you manage the day-to-day.
And also these people are stomach-less super heroes: They run half marathons! They do triathlons! Kudos. I can’t read enough of this sort of thing. It’s great to be inspired and these people are truly inspiring. But I also think it’s fine not to be a super hero and just to get by.
So if you want some advice from someone who has made too many post-operative mistakes to count – and is definitely a getting-by-er rather than a super hero – I’m your man.
1. The one thing I can’t help with As far as I know, there’s no easy way to find out that you’ve got the CDH1 gene mutation and need a total gastrectomy. You either have to have cancer yourself or someone you love has to have had cancer. As you can see above, half my family died before I knew I was at risk of stomach cancer and needed a TG. You might be in a similar situation and, if you are, my heart goes out to you. My wife, Claire, was the greatest support both when my mother died and then when my brother died. The only small piece of advice I can give is that I read a book called Who Dies? and this was a help to me. It might just be some help to you, too.
2. After your operation, eat healthily but not that healthily “What the hell can I eat that doesn’t make me dash to the bathroom?” I promise you, you will think this many, many times. I also feel that people all over the Western world – stomach or no stomach – should eat more fruit and vegetables and less processed food, meat and dairy. Some of my worst food incidents, however, were after eating supposedly healthy things – melons, apples, potatoes. So what’s the answer? Well, nuts will be your friends – they are small and packed with calories without being sugary (pistachios in particular are my new BFF). I also find that home-made fruit and vegetable juices work for me. But don’t beat yourself up too much. You are recuperating from major surgery. Processed foods (biscuits, chips, popcorn etc.) might not be nutritious, but they do have lots of calories. And in the early post-operative days, that’s more important than nutrition.
3. Revel in your new found slimness There’s a bit in the 1990s remake of Cape Fear where the baddie (Robert de Niro) tells the goodie (Nick Nolte) that after the age of 21, you can’t help gaining roughly a pound a year. And, before my operation, aged 42, Bobby had it pretty much spot on for me. And then, a few months later – Zap! Pow! – it was all gone: I had the body (well, the weight, anyway) of a 21 year old. There’s not much good to be said for CDH1 and having your stomach taken out, but this is definitely the upside. Enjoy it.
4. Get some structure in your life It feels like a long time since I could say I was properly ill. But what I do get is a kind of wooziness or doziness. There are hours, sometimes days, where what I really want to do is just sleep and nothing gets done. I’ve found a cure though: a website called beeminder.com. You set up goals for just about anything you can measure (number of pistachios eaten, fresh juices made, minutes of exercise) and you have to pay money if you fail to meet your targets. Trust me, Beeminder it and it will be done.
5. Never call yourself a cancer victim I wouldn’t even call myself a cancer survivor. I just don’t want to be defined by cancer or not having a stomach. There’s a really wonderful video on You Tube called ‘I’ve got 99 problems and palsy is just one of them’. And that’s how I feel about not having a stomach: It’s just part – not the whole – of my life. If I could change just one thing in my life so far, it wouldn’t be having a healthy stomach. That wouldn’t even be in the top three – you can work out two of these for yourself and anybody that knows me knows the third.
So there you have it. If you are facing up to life without a stomach, then I know you can do it. You will almost certainly be much more of a super-hero than I’ve ever been. You can take this in your stride. Stay strong and stay positive: you are nobody’s victim.
A major breakthrough in the area of familial stomach cancer research was the discovery of the gene E-cadherin (CDH1) and the direct connection between genetic mutations and hereditary diffuse gastric cancer (HDGC). Since this discovery, hundreds of families worldwide have been tested and over one hundred found to carry a genetic mutation in the CDH1 gene that dramatically increases a carrier’s susceptibility to stomach and breast cancer. With this breakthrough came risk-management opportunities to those found to carry a mutation, such as prophylactic surgery to completely eliminate the risk for this lethal disease. Despite CDH1-testing providing over 40% of HDGC families with the information necessary to significantly reduce their risk of stomach cancer, such genetic changes are not found in the remaining 60% of families and CDH1 is currently the only gene tested. Consequently, the majority of HDGC families are left with a strong burden of uncertainty as to if they are at an increased risk for stomach cancer.
Growing up on the small island of Newfoundland on the east coast of Canada, my family has been riddled with occurrences of both stomach and breast cancer. My grandmother (both a stomach and breast cancer survivor) suffered the loss of 6 siblings to cancer and in 2002, we lost my aunt at the young age of 40 after a lengthily battle with stomach cancer. It was around this time when my family met with a local genetic counselor that brought our attention to Dr. David Huntsman’s group (Vancouver, BC) and a study they were conducting on HDGC. They were offering CDH1-gene screening to families that met specific criteria for familial stomach cancer and our family was surely a candidate.
After testing positive for a CDH1-genetic mutation, my uncle and mother decided to prophylactically remove their stomachs, ultimately saving their lives as post-surgical evaluation of their stomach tissue revealed small cancerous lesions. Knowing I was at a 50% risk of inheriting the mutation, deciding to undergo testing came easily as the consequences of remaining naive were too great. After enduring the emotions of genetic counseling, my sister and I both received the incredible news that we do not carry a CDH1-mutation and are therefore at no greater risk for stomach cancer than the general population. It was after this moment that I decided to pursue the path of research and medicine. I asked myself many questions, including: how would my family have felt if no CDH1-mutation was found? To me, not knowing what gene was likely causing the cancer in our family would have set me up for a lifetime of anxiety and unrest. I began looking for opportunities to become involved in hereditary cancer research and was given the incredible opportunity to move to Vancouver, British Columbia and work in Dr. Huntsman’s lab. My goal was to provide a greater number of HDGC families with a genetic landscape to their disease in hopes that others could one day feel the same relief that I had.
Working under the guidance of Dr. Huntsman and collaborating with Dr. Carla Oliveira (Porto, Portugal) has allowed me to contribute to the cutting edge research in this field and fulfill my aunt’s legacy. I recently completed a Master’s degree with Dr. Huntsman as my supervisor, focusing my research on identifying new genes that contribute to the HDGC spectrum. I used an advanced genetic sequencing technique to focus on specific areas (genes) of interest in the human genome. Compared to costly and time-consuming full genome sequencing, this new technique can screen multiple (up to 96) individuals across a specific panel of genes selected for the disease of interest. Through this project, we screened 140 HDGC families without CDH1-mutations and successfully identified potential disease-causing mutations in several new genes that have never before been connected to this disease.
The funding from the No Stomach For Cancer organization allows us to carry these findings to new heights. We are collaborating with groups across the globe that study this syndrome and are collecting the largest cohort of HDGC families with unexplained hereditary stomach cancer in order to screen them against our new genes of interest. This will confirm the contribution these genes make to HDGC and open the door for clinicians and genetic counselors to offer a greater number of families with potentially risk-management opportunities. In addition, Dr. Oliveira’s group will conduct functional studies on regions of the CDH1 gene never before thought to increase risk for cancer. In doing so, she is hoping to prove that mutations in these regions do, in fact, increase susceptibility for stomach cancer and provide families with such mutations the same risk management opportunities as those with prominent CDH1 variants.
Combining knowledge of CDH1-mutations with our current study will significantly impact the field of familial stomach cancer. We aim to uncover new causes and work toward completing the genetic profile of HDGC. Doing so will extend the range of genetic testing offered to HDGC families and help them make informed decisions about their risk-stratification and cancer prevention.
We want to sincerely thank No Stomach For Cancer and members of the community for providing the funding necessary to carry this project forward. Their tireless efforts to expand research, educate the public and raise awareness continue to make milestones in the field of stomach cancer.
I am thrilled to be working on a project dedicated to unearthing the root-cause of stomach cancer in a greater number of families, while providing them with the same opportunity given to my family to face their risk head on.
By Samantha Hansford, MSc
On behalf of
Dr. David Huntsman (Vancouver, British Columbia)
Dr. Carla Oliveira (Porto, Portugal)
Devens, MA – No Stomach For Cancer, a nonprofit organization dedicated to supporting research and uniting people worldwide affected by stomach cancer, is pleased to present a free Spotlight on Gastric Cancer program Saturday August 9, 2014 from 1pm-4pm at Devens Common Center in Fort Devens, MA. This educational event will review current perspectives and treatments for people living with Gastric Cancer, people living with Hereditary Diffuse Gastric Cancer (HDGC), their families, friends, and health care professionals. Presentations by renowned healthcare professionals will cover new treatments, latest clinical trials, genetic testing, targeted treatments, nutrition, the latest
research, and more.
“This gathering is much more than an educational panel,” said Beth Lambert, No Stomach For Cancer Board Chair. “It is an opportunity to connect with others who know the heartache that stomach cancer can cause, who have travelled the same journey as others affected by this terrible disease, and who want to hear from those who are in the trenches, those trying to eliminate this disease.”
Stomach cancer is the second leading cause of cancer death worldwide, with one million new cases diagnosed each year and more than 800,000 deaths annually. Stomach cancer currently receives the least amount of federal funding per cancer death in the United States. No Stomach For Cancer’s key priorities are to advance awareness and education about stomach cancer. This educational event will feature a panel of experts from numerous renowned medical centers, including Dana Farber/Harvard Cancer Center, UMass Medical Center, and Massachusetts General Hospital. No Stomach For Cancer recently awarded $100,000 for stomach cancer research. Hector Li Chang, who is on one research team that was awarded one of No Stomach For Cancer’s $50,000 grants, will moderate the event.
Spotlight on Gastric Cancer is a free event and open to all. No Stomach For Cancer requests that attendees RSVP by registering at www.nostomachforcancer.org/support-us/events. There will be a reception immediately following the Spotlight program.
About No Stomach For Cancer: Founded in 2009, No Stomach For Cancer, Inc. is a 501(c)(3) nonprofit organization dedicated to raising awareness about stomach cancer. The organization’s mission is to support research and unite the caring power of people worldwide affected by stomach cancer. Headquartered in Wisconsin and serving families across the globe, No Stomach For Cancer is a worldwide leader in raising awareness and advancing education. For more information, please visit www.nostomachforcancer.org.
Madison, WI - July 15, 2014 - No Stomach For Cancer is pleased to announce two $50,000 grant awards to fund exploration of the development of gastric cancer. In keeping with the organization’s mission, these grants will facilitate research projects that hold the promise of improving prevention, diagnosis and treatment of this deadly disease.
The first research grant will support Dr. David Huntsman from the University of British Columbia and Dr. Carla Oliveira from IPATIMUP, University of Porto, Porto, Portugal. Dr. Huntsman and Dr. Oliveira will conduct research into the role of how the CDH1 gene functions in relation to the development of Hereditary Diffuse Gastric Cancer (HDGC). Researchers have only an incomplete understanding of how the CDH1 gene functions in relation to the development of HDGC and Drs. Huntsman and Oliveira intend to expand the knowledge base by identifying more variants of CDH1 and pinpoint additional genes that may play some role in
the development of HDGC and other forms of gastric cancer.
The second research grant will support Dr. Luis Carvajal Carmona, from the University of California at Davis, as he conducts research into the causes of familial stomach cancer through DNA sequencing. The current genetic test for familial stomach cancer is only beneficial for less than half of families and the genetic cause of remaining cases is unknown. In order to help the families in which the genetic test does not predict cancer risk, his research will focus on families from around the world for whom there is no known cause of cancer aggregation.
“We are pleased to support both of these extraordinary research projects which will increase our understanding of the evolution of gastric cancer and its underlying causes,” said Beth Lambert, chair of NSFC. “It is the goal of NSFC to continue to fund research that is essential in leading to a cure for stomach cancer. NSFC is working to increase the amount of funding and support to eradicate stomach cancer.”
Gastric (stomach) cancer is a deadly cancer. Worldwide, stomach cancer is the fourth most common type of cancer, and the second leading cause of cancer deaths.1 In the U.S., gastric cancer is an often-fatal disease frequently diagnosed at late stage when the disease is incurable. The 5-year survival rate for Stage IV stomach cancer is 4% and overall 5-year survival rate of approximately 29%.1
Founded in 2009, No Stomach For Cancer, Inc. is a 501(c)(3) nonprofit organization dedicated to raising awareness about stomach cancer. The organization’s mission is to support research and unite the caring power of people worldwide affected by stomach cancer. Headquartered in Wisconsin and serving families in countries around the globe, No Stomach For Cancer is a worldwide leader in raising awareness and advancing education. For more information, please visit www.nostomachforcancer.org
As I sit to write this, I realize my story is like a double-sided coin. On one side, I am an extremely lucky person. On the other side, I’m a cancer patient and survivor. It has taken a lot of effort and emotion for me to come to terms with that statement…that label – cancer patient. But there really is no disputing it. As a matter of fact, I am a two-time cancer survivor! Here’s my story.
Two years after learning that I carry the CDH1 genetic mutation, which put me at a very high risk of developing a hard to detect, and even harder to treat, form of gastric cancer (HDGC), I decided to do what the doctors recommended and have my stomach removed as a preventative measure. This surgery is called a prophylactic total gastrectomy (PTG) and I had it done in July 2011 when I was 40 years old. I went from having up to an 80% chance of developing HDGC, down to less than a 1% chance. The interesting thing was that when they ran the pathology on my stomach tissue after removing it, they found four small areas of previously undetected early invasive carcinoma. So, I actually had cancer and didn’t even know it! But, the good news was that because it was localized, and had not spread to any lymph nodes, I was considered cured with no further treatment needed. Adjusting to life without a stomach was a challenge, but things improved over time, and I was certainly motivated by enough gratitude to get me through that process. At that point, I never really considered myself a cancer survivor. But, my story doesn’t end there.
Ever since I first learned I carry the CDH1 mutation in 2009, I had another little thing to deal with… an increased risk of breast cancer. With the CDH1 mutation, in addition to the high risk of stomach cancer, the risk for developing lobular breast cancer is 40-60% over the course of a lifetime. So for the past five years, every six months I alternated between having a mammogram and a breast MRI to screen for potential abnormal areas. These screenings were regular reminders of my potential risk, but I also always felt fairly hopeful that if they should ever find something it would be early enough to be treated successfully. The truth of the matter is that breast cancer research is much more advanced compared to stomach cancer. And, since I was being treated at one of the major centers of excellence in the world for my screenings (Massachusetts General Hospital in Boston), I was in very good hands. I didn’t feel the need to dwell on it too much.
That is, until late March of this year (2014). Following my most recent breast MRI, I received a call saying that they think they saw an abnormal spot and wanted to investigate it further. Within a few days, I had a biopsy and had the results. It was indeed a very small spot of invasive lobular carcinoma of the breast. Even though this is something I always knew was a possibility, nothing could prepare me for the reality of hearing this news and then having to actually tell the people that I love, “I have breast cancer.” Doing so was extremely difficult and emotional given my family’s history with the disease. We’ve each witnessed the struggles of other family members who have passed on, and we tried not to let the fear overtake us and fought hard to be as positive as possible.
So again, on one side of the coin, I had breast cancer. But on the other side, this was part of the potential plan all along – detect it early, take care of it aggressively, and hopefully get on with my life. Since it was found very early, I was truly fortunate. If I were not getting regular screenings, this would have not been found until it was much further along. Even if I were getting just an annual mammogram, it may not have been found. I believe it was the sensitivity of the MRI along with the contrast dye they inject in the process which proved to be most effective.
True to my word, and also at the recommendation of my doctors, I agreed to have a double mastectomy with reconstruction on April 30, 2014. Even though the cancer was only found in one breast and was a very tiny area, the likelihood of it developing further, and also in the other breast eventually, was pretty high. The choice then became, have one operation now, or have one now and very likely having another one sometime in the future. That was an easy decision.
I had three weeks before the surgery to emotionally come to terms with my diagnosis. What scared me wasn’t the surgery itself, but the unknown factor that there could be more cancer found. My doctors wouldn’t give me any indication if I would need further treatment such as chemotherapy or radiation, until after the surgery and pathology tests were performed. As you can imagine, this made me pretty nervous.
The surgery itself went smoothly with no complications. While in the operating room, they conducted a preliminary test on the lymph node on the side that the cancer was found, and it was clear with no sign of cancer. This tells the surgeon that the cancer did not spread beyond the breast tissue, and there was no need to remove any more lymph nodes. This was very good news. Had the cancer spread beyond the lymph nodes, this would mean it most likely would develop in another area of my body. Also, the plastic surgeon who worked in conjunction with the breast surgeon was able to fit implants in at the same time, which isn’t always possible. Many women either are not able to get implants at all for various reasons, choose not to have implants, or have to wait months after the first cancer surgery for tissue expanders to stretch the skin before having another surgery to have the implants placed. I was very fortunate.
I was in the hospital for two nights. The pain, swelling, discomfort, and soreness I felt were substantial, but bearable with the help of pain meds. I was surprised at the limited mobility in my arms. I could barely lift them, and really couldn’t move my left arm at all for several days. Over the next six weeks while I recovered at home, my mobility increased and my soreness decreased in tiny little increments. The first few weeks of recovery were filled with many emotions over the loss of my breasts and frustration over my slow progress. It seemed like I would never feel normal again, but eventually I did. Although, my doctors tell me there will always be a certain amount of numbness and tightness in that area of my body. It’s just something you become accustomed to.
About a week after surgery, I received the results of my pathology. The area of invasive lobular cancer was so small, that it had actually been removed during the biopsy! It was less than 0.75 millimeters. What was left behind was lobular carcinoma in situ (LCIS). These are abnormal cells formed in the lobules of the breast. LCIS isn’t cancer. But being diagnosed with LCIS indicates that you have an increased risk of developing breast cancer. These were found surrounding the original invasive cancer site, and were also found in other areas of both breasts. It really was just a matter of time before these cells would develop into an invasive cancer, especially with my genetic predisposition. So my decision to have a double mastectomy was justified. My risk went from 40-60% down to about 5% (less than the average woman). And on top of that, I will not need any chemo or radiation therapy!!!
There is no question that there was an enormous sense of relief and gratitude upon hearing that news. But mixed in with that was an emotion I didn’t anticipate, and something I will probably always have to try and come to terms with…I felt truly humbled. In a sense, I felt sort-of unworthy, but not because I don’t think I deserve good news. It had more to do with the fact that I understand the immense magnitude of the bullet I had just dodged. Fighting a cancer diagnosis – going through chemo, radiation, and all the side effects that correspond to those treatments – is an absolutely horrible experience that I’ve witnessed too many people endure. To know, that I’ve side-stepped this fate not once, but twice, is incredible. The pioneering research in genetics in recent years has enabled me to be fortunate enough to have a heads-up and react early. As you can imagine, this experience has drastically altered my view of life. You can also image how motivated I am to support further research so that future generations have even better stories to tell, or maybe even none at all.
As I move on from this experience, I’m not waiting on the sidelines to see which side the next coin will fall on. It doesn’t really matter to me because I know that whichever direction life takes, I will face it head-on, embracing as much joy and love from the good times as possible, as well as learning from, and striving to find the positive from the bad times. I look forward to continuing working with NSFC to increase awareness, raise funds for research, and support other families affected not only by the CDH1 genetic mutation, but all types of gastric cancers, which are in desperate need of more research. And I will work hard to stay healthy, love and cherish the people in my life, and accept whatever comes my way on this double-sided coin of life.
Gretchen Borzi happily serves on the NSFC Board of Directors, and lives and works in Massachusetts with her husband and two children. She underwent a successful prophylactic total gastrectomy in 2011.
By Lorita Sajous
For those who do not know my story, I became pregnant two months after my mom’s stage 4 gastric cancer diagnosis. For nine months, we faced all obstacles together until she passed away in February 2013. I was her caregiver, her advocate, and the person with whom she relied on to get her through her difficult cancer journey. I explored so many avenues of cancer treatments, while trying my best to stay on top of every aspect of treatment management. I became immersed into the medical world, looking for any ray of hope to save her. Following her passing, there have been days in which I look back at my own blog, read about the past events and just become exhausted all over again. How did I do all that? And, how did I do it while pregnant with my first child? Some might see my actions to save her as selfless, while others might see them as selfish. But, in the end, it was not enough to save her. But one thing is for certain–mom knew all I had done for her and how much I loved her. I have no doubt in my mind she left this world knowing that.
When I wake up each and every day, for a split second in time, I have the urge to call her to tell her some random tidbit about my life. Within seconds, I realize she’s not here anymore.
The past year has taken some getting used to. Life is not the same without her silly, quirky self. I miss her smile and her loving nature. She was the rock who supported me in every aspect of my life. To lose the person who brought you into this world is heart wrecking.
For as long as I’ve been married, mom was so anxious to have her first grandchild. But, it was not until she became ill that I became pregnant. My whole pregnancy and the birth of my beautiful son was bittersweet. In the nine months I carried him, my son was this abstract concept, and the whole idea of him being this living human being was very surreal. Lots of aspects of the traditional baby preparation process were placed on the back burner to the struggles that were placed before me. I did not get a chance to read the books I wanted, attend the mother-to-be classes, get my baby registry done early, go to stores with my mom to buy cute baby clothes, or indulge in vast amounts of food like most women do. Instead, an average day was working eight hours and returning numerous calls to medical personnel. If I was at home, I would be sure to cook food that she was able to tolerate, ensure that she took her medication in a timely manner, review the agendas for upcoming days, essentially, stay with her until she was fast asleep. I would then try to grab a bite to eat myself, get some sleep, only to do it all over again the very next day. Those were some long days.
The loss of a mother is hard. Each day I look at my son, I wish that she was here to see him smile and hear his laughter. I wish she could spoil him like a grandmother would. I wish she was there to care for him when I grew exhausted. I wish she was just there for motherly advice when I was most down. She fought each and every day in hopes to one day meet him. The loss of a mother is unlike anything else in this world–regardless of how young or old you are. A mother is a person who not only spent nine months carrying you, but a person that continues to dedicate their entire life to making you happy and be the best version of yourself possible. When mom died it felt like the string that connected your hearts was cut. She is just not here anymore.
So, one year after her death, I focus on the memories I shared with her even despite them being surrounded by sad circumstances. Though she was unable to meet her grandson, she was so ecstatic about him. She was frequently concerned about whether I was eating enough, getting plenty of rest, even lifting heavy objects…just like a mother would. She even offered advice about general baby care even in the midst of her most difficult chemo sessions. I also remember our good times before cancer. She was there for my wedding. She helped me move into my first home. She never hesitated to bring food and medicine when I was sick. She cooked my favorite foods when I visited her on the weekends. And anytime there was bad weather conditions, she’d call to remind me to wear my big winter boots and bundle up. There are so many wonderful memories. She was one heck of a mom.
The universe has a strange way of balancing things out in the grand scheme of things. For nine months, I struggled with the inevitable outcome of the loss of a mother. It drove me to such a dark and hopeless place. But, on one cold winter day in April 2013, the world gained a new mother. A mother who will love her son like crazy and dedicate her life to make him the best person he can be in this world. I am happy to say that I am enjoying life, loving unconditionally, and finding happiness again after all that has happened. And deep down, I believe mom knows and sees this.
It is said that every person reacts differently and recovers differently after having a total gastrectomy (TG). But something that everyone has in common is malabsorption of vitamins and minerals, which people experience to varying degrees. And one problem that is persistent in every TG patient is deficiency in the vitamin B12.
B12 is a vitamin essential to the healthy functioning of nerve cells and red blood cells. It is found readily in animal meats and products such as milk and eggs, so anyone who eats a non-vegan diet is likely getting plenty of B12 through the foods they consume. It is even commonly added to fortified cereals and other similar products.
Unique to B12 is how it is made usable by the body. According to a fact sheet from the National Institutes of Health, “Two steps are required for the body to absorb vitamin B12 from food. First, hydrochloric acid in the stomach separates vitamin B12 from the protein to which vitamin B12 is attached in food. After this, vitamin B12 combines with a protein made by the stomach called intrinsic factor and is absorbed by the body.”
Now if you were paying attention there you surely noticed that in order to process and absorb B12 from food you need to have a stomach. Those who have had TG and even some who have had gastric bypass rely on not just supplementation of B12, but specifically the injectable cyanocobalamin form of B12. Because without the intrinsic factor in the stomach the body suffers what is called pernicious anemia and is unable to convert vitamin B12 to a usable form; so one can pop all the pills they can swallow and it will likely do no good.
Pernicious anemia causes the body to slow production of red blood cells and according to the above-linked article, “Without enough red blood cells to carry oxygen to your body, you may feel tired and weak. Severe or long-lasting pernicious anemia can damage the heart, brain, and other organs in the body. Pernicious anemia also can cause other problems, such as nerve damage, neurological problems (such as memory loss), and digestive tract problems.”
I had my first shot at the doctor’s office in September 2010 and took home a prescription for a 30mL bottle (which @1mL per dose is 30 doses). I had a friend who is an RN come over and give me my next shot a month later. After that I made Dan watch a YouTube video showing how to give a subcutaneous injection and he gave me shots for several months before I could muster the courage to do them myself. The general rule of thumb is to take a shot a month, so a 30mL bottle is about a two and a half year supply.
I think it was within the first six months of my surgery I started hearing a little buzz about a shortage of B12 but didn’t think too much of it at the time. I guess I felt that I would be okay as I basically had enough for more than two years. Drug shortages happen here and there in the pharmaceutical business and it would likely be resolved by the time I needed more.
Last February, I had to see the doctor for a new prescription. This time the pharmacy was unable to provide me with a 30mL bottle due to the shortage and I had to resort to using 1mL bottles and they could only provide me with 12. (I am currently holding on to my used ones because I fear that one day I will have to pop them all open for the small remainder still inside and combine them just to get a few much needed doses).
Looking into the shortage I discovered that it was ongoing; it hadn’t been temporary as I had previously thought. I heard rumblings on an internet forum somewhere that manufacturers are having trouble sourcing the raw materials to make it. So a few months ago I emailed one of only two FDA approved manufacturers of injectable cyanocobalamin about the shortage.
In reviewing his response from October 2013 he simply said, “What I can report is that we are not manufacturing cyanocobalamin presently but hope to place this product onto manufacturing schedule very soon. The decision to place a product back onto manufacturing schedule is not a simple process and involves several internal departments and regulatory agencies.”
Which I take to be a sincere and professional way of saying, “I have no idea when we are making more.”
The Food and Drug Administration maintains a database of all drug shortages. I have been checking this periodically over the past year and every time the anticipated release date comes, they revise and push the date back further.
But the halt in production of injectable cyanocobalamin is only a small piece in the puzzle of why the shortage is so alarming. Because the main reason for the shortage, the reason the manufacturers have been unable keep up with demand is because it has become fashionable to get B12 shots. That’s right, it’s all the rage these days in the health clubs and the “medical” spas. It’s being touted as a weight loss miracle.
The problem with this is there is absolutely zero evidence that injectable B12 is any more effective than taking oral supplements for healthy individuals. None. The only reason it “gives you energy” and “makes you feel revived” is because some copywriter in a marketing department somewhere is telling you that it does. Medical professionals and journalists alike have found that selling B12 injections as energy builders and an aid in weight loss is just a snake oil ruse. And there is no evidence that B12 aids in weight loss according to the Mayo Clinic.
The fact is that normal, healthy individuals will get the same result taking oral B12 supplements as they get with a shot. Vegans who do not get enough through their diet will also be just fine with oral supplements. But as I explained above, TG patients, gastric bypass patients and others with various stomach and intestinal disorders, including the elderly, are increasingly missing out on these MEDICALLY NECESSARY injections because celebrities like Madonna and Justin Timberlake want to have more pep in their step.
Last summer, Dr. Jane Sadler lamented the B12 shortage and explains it’s the placebo effect that makes people think they are getting “results” from the shots. I can attest to the placebo effect at work here because I had told my doctor how I felt it working immediately and he smiled at me the way one would smile at a child that has just told the most unbelievable, fantastic tale. In other words, you don’t feel anything working; you just think you do.
Another physician likens the current B12 shot craze to a “fetish” and calls out it’s overuse. Regrettably, he does not mention that there are some people for which oral supplements do not work and they are the ones most harmed by this increasingly popular practice.
Also, a television station in Salt Lake City, Utah (video seen here) investigated the use of B12 injections for non-medical reasons and did a good job in pointing out that people are basically wasting their money. What it failed to do is bring to light how this recreational use of injectable B12 is actually harming people who need it because it is making it very hard to find and also causing the costs to skyrocket.
The increasing cost brings up another point: if you are getting B12 injections at the gym or the spa, man are you getting ripped off. Oh. My. Word. Are you ever getting ripped off! Even with the rising costs people are paying too much for these shots. This alone should enrage current proponents of the “needle-fed B12 fad” and send them right to the vitamin aisle for a $10 jar of oral supplements.
I called a local “medspa” and inquired about their B12 injections. I was told that it would be $100 for a month long treatment. Upon further inquiry she explained that it would be one 1mL injection per week for four weeks. So that’s $25 for a 1mL shot. That seems to be a bargain as the journalist from KSL TV in Salt Lake City reported that people are paying up to $80-90 a shot. No wonder so many outlets are offering these “miracle” shots. It’s all about the money.
I dug up my receipts and can report the following:
September 2010 I paid $31.90 for a 30mL bottle and 30 syringes = $1.06 per 1mL dose.
February 2013 I paid $42.90 for 12 1mL bottles and syringes = $4.40 per dose
February 2014 I paid $61.95 for only 9 1mL bottles and syringes = $6.88 per dose.
This demonstrates both the rising costs of injectable cyanocobalamin and exemplifies the ridiculous markup associated with the trendy marketing of this vitamin outside the medical community. And those are retail prices. You know these health clubs and spas aren’t paying retail; they’re paying much less than that. Basically, if you are paying more than about $10 for a 1mL injection, you’re being bamboozled. And it seems a lot of people are paying 5-10 times more than that.
Then there is the dosage to consider. People who need injectable B12 because they cannot absorb it from food or oral supplements are prescribed about a 1mL injection every month. I know of some who get one every two weeks and others who get one every 2-3 months, but once a month seems to be the average.
Getting the shots once a week is just overkill for healthy people who have their stomachs intact. And I’ve even seen references in weightlifting forums to people taking them every 3-4 days. That’s literally pissing money away because your body is not storing all that. You’re getting too much, paying too much, and it’s being excreted through your urine.
I’m not against people who strive for a healthy lifestyle and choose B12 supplementation as a way to maintain that health and well-being. I just ask that people reconsider their use of the injectable form. Most people simply don’t need it. And they are causing a shortage for others who can suffer severe effects, including death, if they have to go without for too long.
Looking on the bright side, there is some indication that the sublingual and nasal spray forms of B12 are absorbed directly into the bloodstream, through the mouth or sinus cavity respectively, circumventing intestinal absorption and the need for intrinsic factor. Anecdotally, I have heard they work for some people; I have also heard it does NOT work for other people and they need the shots to keep their levels from getting dangerously low.
It is also speculated that the methylcobalamin form of B12, while more expensive, is better absorbed by the body and that it’s use shows promise. If absorption is viable using the above delivery methods, rather than injection, it may prove to be beneficial to those who cannot absorb it through the intestine.
So if it turns out that I can dissolve a few sublingual tabs under my tongue every day and still get a decent amount of B12 to keep my body healthy, I will surely ditch the needles. Then all the fad dieters and body builders can continue to pay ridiculous amounts of money for injections that do very little for them. After all, this is America, and people have every right to be swindled by charlatans.
If you have been affected by an illness or crisis, then you know how valuable it is to connect with others who have experienced something similar. People in the No Stomach For Cancer community, especially when first impacted by stomach cancer, whether as a patient or a caregiver, want to know they are not alone. Although gathering medical information is critical, equally important is the human aspect of a diagnosis. Reading others’ stories often provides hope and direction during an extremely emotional and confusing time. Therefore, we encourage you to share your experience with stomach cancer with others through the No Stomach For Cancer website, often their first source of information about stomach cancer.
If you are considering writing a guest blog post, please contact us for answers to any questions you may have and discuss a timeframe for submitting your blog.
The NSFC Blog Guidelines will help you get started.
One of my favorite aspects of my involvement with No Stomach For Cancer is connecting with others – patients, their families, and medical professionals. Each day we live our mission statement of “supporting research and uniting the caring power of people worldwide affected by stomach cancer.”
Several years ago, I had the privilege of connecting with Brandeis University, where Devanshi Patel, my genetic counselor and member of NSFC’s Scientific Advisory Council, earned her graduate degree in Genetic Counseling. I was invited to share my family’s HDGC story with graduate students in the Genetic Counseling Program at their Winter Conference. Since then, my brother Mike and I speak regularly about our family’s experience. It is a great opportunity to share information with future medical professionals who will deal directly with patients. The group listens attentively and asks great questions, always focused on how to best help their patients.
Shortly after last year’s conference, I was contacted by one of the professors from the program, indicating that one of her students expressed an interest in doing her thesis on HDGC. She wanted to know if I would be interested in being on her Thesis Committee. I was thrilled on so many levels. First and foremost, I was excited that her project could generate research that might help those affected by HDGC. Also, in addition to working with the exceptional Brandeis faculty, I was excited to be able to work closely with Devanshi Patel, who would also serve on the Thesis Committee.
One year and many e-mails, phone calls, and meetings later, I am excited to share with the No Stomach For Cancer community the opportunity to participate in her research study “The Psychosocial Implications of Hereditary Diffuse Gastric Cancer. I am excited because this project because it embodies what NSFC is all about, “supporting research” and “uniting people worldwide. This is a wonderful opportunity for those impacted by HDGC to share their experience, their concerns and, their suggestions.
I encourage anyone impacted by HDGC to participate in this study. Not only will it help advance research and help others, it can be therapeutic to make your challenges and experiences valuable to those whose lives may be affected by HDGC in the future.
Thanks in advance for considering participation in this study. Your help will make a difference.
No Stomach For Cancer, Inc. (NSFC) is pleased to announce a funding opportunity for gastric cancer research. In 2009, after losing two family members to gastric cancer and learning about the CDH1 genetic mutation that increases the risk of developing gastric cancer, the Chelcun family founded the non-profit organization, No Stomach For Cancer, Inc. Headquartered in Wisconsin and serving families around the globe, NSFC is a worldwide leader in raising awareness, advancing stomach cancer education and supporting individuals and families affected by all forms of stomach cancer.
In line with our mission to support research and unite the caring power of people worldwide affected by stomach cancer, this one-time award of $50,000 ($45,000 direct; $5,000 indirect) will go towards a research project that has the potential to improve the lives of those affected by stomach cancer.
For this award, we seek to fund a project that addresses a well-defined research question in the area of diffuse gastric cancer, with emphasis on screening, early detection, treatment or prevention. Projects furthering the understanding the biology and pathogenesis of gastric cancer will also be considered. Strong applications will demonstrate broad impact for the field and treatment of gastric cancer more widely, beyond diffuse gastric cancer. Special consideration will also go to promising applications from investigators who have not previously published in the field of gastric cancer research.
NSFC reserves the right to request and release details of the successful application, such as the research project title, investigator names, host institutions, work contact information, and technical and lay research summaries and updates. Additionally, any publications or presentations resulting from this award must acknowledge NSFC as a funding source.
To apply, complete and submit the application by March 3rd, 2014 5PM Eastern Standard Time to SAC@nostomachforcancer.org. We aim to make our final funding decision by the end of May 2014.
General inquiries regarding NSFC may be directed to Meghan Gauger, Executive Director at firstname.lastname@example.org, or at 608-692-5141. Questions regarding the grant application process may be directed to Jennifer Lai at email@example.com. To receive updates about future NSFC funding opportunities, please email Jennifer at the email address above.
Madison, WI – September 11, 2012 – No Stomach For Cancer, a national non-profit organization dedicated to raising awareness about stomach cancer, will host its first-ever Walk to raise stomach cancer awareness on Saturday, Nov. 3.
Stomach cancer is the second leading cause of cancer death in the world, according to the National Center for Biotechnology Information. The American Cancer Society estimates there are one million new cases diagnosed in the world each year, with more than 800,000 deaths annually. This first-of-its-kind global event will help bring much-needed awareness to this horrific disease. November is National Stomach Cancer Awareness Month®
“People throughout the United States and the world have been asking for an event in their area – for a way to join with others to raise awareness and support the fight against stomach cancer,” said Karen Chelcun Schreiber, Board of Directors Chairperson for No Stomach For Cancer. “Our goal is to unite the caring power of people worldwide to take steps together to bring stomach cancer awareness into the public eye …[The walk] is a critical step in the effort to save lives and advance stomach cancer research.”
People are invited to walk individually, or as a group, on Saturday, Nov. 3. The day, which is sponsored by Benjamin Moore Paints, is meant to have an organic feel to it; those interested in obtaining official walk packets are encouraged to visit www.nostomachforcancer.org for details. The packets contain official T-shirts, wristbands, magnets and other things for the day in the familiar periwinkle color that represents stomach cancer. Cost is just $40 until Oct. 1 ($45 Oct. 2-22, $75 after Oct. 22) All proceeds raised will help No Stomach For Cancer to support stomach cancer research.
Contact people have been established within specific geographic areas for walkers who would like to participate as part of a group. To become a contact person, or to get in touch with one, registrants should email Beth Lambert at firstname.lastname@example.org.
In America alone, it was estimated that 10,000 people died of stomach cancer in 2011. Moreover, one in 114 men and women are at a lifetime risk for this deadly disease. Twenty-one thousand Americans are diagnosed with stomach cancer each year, according to the American Cancer Society. The disease receives the least amount of federal funding per cancer death. The 2012 walk will unite the No Stomach For Cancer community in spirit, with all participants working towards a common goal: awareness.
About No Stomach For Cancer:
Founded in 2009, No Stomach For Cancer is a 501(c)(3) nonprofit organization dedicated to raising awareness about stomach cancer. The organization’s mission is to support research and unite the caring power of people worldwide affected by stomach cancer. Headquartered in Wisconsin and serving families in countries around the globe, No Stomach For Cancer is a worldwide leader in raising awareness and advancing education. For more information, please visit www.nostomachforcancer.org
One of the most grim facts about Hereditary Diffuse Gastric Cancer (HDGC) is that the average age of onset is 38. Although stomach cancer of all kinds is now being seen in people at younger and younger ages, the most recent statistics still show an average age at diagnosis of 70 years.
Since the discovery of the CDH1 gene mutation in 1998, those with a family history are able to test for the mutation and consider prophylactic (preventative) total gastrectomy (TG) as an option. Stomach cancer is generally not known to be a young person’s disease, but for many of those who test positive for the CDH1 mutation in his or her 20’s, the decision to undergo TG is presented at this young age.
Contemplating one’s risk for cancer is not something on a person’s mind when in his or her 20’s. Yet at a time when they are thinking about advanced education, career options and generally finding their place in the world, more and more young adults with the CDH1 mutation are making the decision to have a TG.
Having this surgery at such a time in life creates a unique set of decisions for CDH1 carriers that may seem unfathomable to their peers. The first is whether or not to undergo genetic testing.
Simply making the decision to have a genetic test is a deeply personal choice. Some come to it easily, but for others it’s not so simple. For siblings Brian and Johanna Chelcun, who both had TG at the age of 26, the choice was made along with several other family members.
“I don’t really remember making the decision,” Johanna explains. “I just remember all of my family members were getting tested so I followed along.”
Indeed, it was their father’s battle with Stage IV gastric cancer and the passing of their grandmother in 1982 from gastric cancer which prompted the family to seek answers about a genetic link.
“My father was diagnosed with CDH1 after he and his mother were sick,” says Brian. “There was never a question of whether I should or would get tested; I knew automatically that I had to do it. Information is power.”
Jenn Lai of Hawaii, who chose to get tested in 2010 just prior to her senior year in college, shares Brian’s sentiment.
“The decision for me to get tested was a no-brainer. I like information, and I believe that the more information one has, the better equipped one is.“
Her mother had passed away at the age of 40 when Jenn was just 7 years old and she had long suspected a hereditary component to her mother’s illness. Jenn was considering going into medicine at the time and her inquisitive scientific nature led her to look for information. She quickly discovered HDGC and the CDH1 gene mutation and has been learning all she can about every aspect of the condition and making informed choices for her future.
As if choosing to have a genetic test isn’t stressful enough, if you receive a positive result there’s an even bigger decision to make. Current methods of surveillance cannot adequately detect the diffuse signet cell adenocarcinoma in an early stage. The only option, other than risking possible metastases and delay of diagnosis until the cancer is in an otherwise advanced stage, is TG. For many carriers of the CDH1 mutation, it isn’t a matter of if they will undergo TG, but when.
“I knew that at some point I would have to have the surgery,” says Johanna, “so for me the decision was mostly about the timing.”
Often the timing means making tough decisions about one’s education. Jenn Lai will be having her TG in March of this year, which is at an earlier age than most would choose. She found out about her CDH1 test result at around the same time she received positive news of a more encouraging nature.
“I had already applied for and received a Rhodes scholarship, which gives me the opportunity to study at Oxford University for up to 2 years. I was also in the midst of applying for MD/PhD programs, a program that on average takes 8 years to complete.”
She accepted placement in an MD/PhD program in March of 2011 and was able to defer her enrollment until she fulfills her scholarship at Oxford.
“I went to Oxford in the fall of 2011 and about a month in realized that I hadn’t yet fully come to terms with the information. I was lucky enough to get a deferral of my scholarship and I will now be getting the surgery done this year before returning to Oxford this fall.”
Both of these young women chose TG as a prophylactic measure as screening didn’t turn up any abnormalities. However, in Johanna’s case, post-operative pathology showed 32 cancerous lesions in her stomach.
Her brother Brian had a different outcome with pre-operative surveillance. While he had already made the decision to have a TG, results of pathology made him schedule the procedure sooner than he had originally planned.
“After an initial negative screening, tests were re-run and consultation was sought from a specialist in Portugal and my doctor determined that they had, miraculously, discovered a small precancerous lesion,” Brian explains. “So my surgery was not so much prophylactic. I had already met with surgeons and decided to have surgery in the near future, but once these re-run tests came back I moved up my surgery to just a few months later.”
For Laura McFetridge Ayala, scheduling surgery came down to an issue of cancer diagnosis as well. She had a TG in August of 2011 and is the third of her siblings to undergo this surgery while under the age of 27 .
“Cancer was found during a biopsy after 5 months of knowing I had the [CDH1] marker,” explains Laura. “The detection did affect the timing of surgery because I am 22 and at the beginning of my life, a year after graduating college. So I wanted to do the surgery ‘before my life began’ in a way.”
After TG, most patients do not need chemotherapy or radiation. Surgery alone is often considered curative if it wasn’t simply preventative to begin with. At this point the immediate danger of cancer is avoided but there are other challenges ahead for a 20-something both during recovery and indeed throughout his or her entire life.
When in your twenties, a large part of your life is socialization. Whether you are going out to bars and restaurants or gathering at someone’s home, it may be hard to hide the fact that you do not eat or drink the same as your peers, especially within the first 6-12 months after surgery.
“This is definitely a challenging part of post-TG life,” says Johanna. “Most of the time I can eat and drink normally and don’t have to make excuses or talk about it. But there are definitely times when I have to say ‘no thanks’ to something because I know it will make me uncomfortable.”
Brian concurs that simply hanging out with peers can be troublesome.
“It was difficult and awkward, especially at first. I did not go out much for the first few months after surgery and didn’t drink alcohol for almost a year after surgery. I didn’t like to explain to anyone but my closest friends that I had had the surgery, which made making excuses difficult sometimes. The food part was ok, but making excuses about not drinking can be awkward because people assume you have an alcohol abuse problem or are doing it for religious reasons or other things, and if you say ‘no it’s a medical condition’ then that can really kill the conversation.”
Not many people in their 20’s are aware that they may carry a mutation that will affect their lives for years to come. Social relationships, especially dating, can be tricky for a young adult hesitant to share their experience with new colleagues or even a prospective mate. Each individual has to decide both when they feel comfortable sharing their story and how much information to share.
“I was really lucky to find a great guy about 4 months after my surgery,” says Johanna. “I told him about my surgery on our 2nd date when we went to a wine bar for appetizers and dinner. He was, and always has been, extremely understanding and supportive. We’ve had a lot of talks about the future implications such as my risk for breast cancer and the genetic risks [for future children]”
Laura has had the full support of her husband from the time she was thinking about genetic testing through her surgery and present recovery.
“He understood what it all meant and talked to my sisters about it,” says Laura. “He knew what he was getting into and wanted to be there every step of the way. He came with me for my genetic testing.”
While everyone recovers differently and at a different pace after a TG, the surgery will not necessarily rob a young person of his or her physical capabilities. All it takes is time.
“I was limited at first, as expected, but started walking as soon as I got home from the hospital,” says Johanna. “I even went ice skating, carefully, about 2 weeks after my surgery. Slowly I became more active. I actually started working with a personal trainer at my gym who helped me get my energy and stamina back while doing exercises that didn’t stretch my abs too much. I ran a half marathon about 10 months after my surgery!”
Brian also has a half-marathon under his belt having gradually built up to it over the course of a year.
“I began running about 4 months after surgery and ran a 5K about 5 months after surgery. I’d say I’m about 95% back to before surgery. My one issue sometimes is staying hydrated since I can’t chug a glass of water.”
The physical adaptation a TG patient must undergo is enormous; it’s a whole new way of eating, drinking and maintaining physical health. But it also bears mentioning that emotional stress can take a toll on a young person facing genetic testing and then possible surgery.
“I had my TG about one week after my father passed away from HDGC.” Brian says. “I had a very difficult emotional recovery from both the surgery and his death.”
Laura also mentions that even though family members gave her advice about what to expect physically after this surgery she wasn’t fully aware of the emotional impact.
“I really struggle sometimes with feeling not myself, having anxiety and feeling a little depressed,” Laura says. “But everyone has different emotional issues with this surgery.”
Those words are very true. Everyone responds to this surgery differently whether the issues are mental, physical or emotional. Cancer can be devastating to all families. It can be more so to CDH1 families as there are often several family members who have passed away from gastric cancer and others who face the same surgery.
The up side of this, if you can call it that, is that a CDH1 carrier has the built-in support of their family members who have met this challenge with success and can be an invaluable source of information, advice and support.
The NSFC website has a special place for young people facing CDH1 and HDGC on their discussion forums. If you are new to this process or have been through it, consider creating an account and starting a dialogue. Our Community is a great way to connect with peers who face the same challenges you do.
Johanna Chelcun is a physician’s assistant and assistant professor at the Quinnipiac University PA program in North Haven, Connecticut
Brian Chelcun attends law school in New York City and has recently passed the 3rd anniversary of his TG.
Jenn Lai will have her TG in March of this year and then pick up her studies in the fall. You can keep up with her process and progress on her blog, gastronomically speaking.
Laura McFetridge Ayala is adapting to both not having a stomach and being a newlywed. She currently lives in Pennsylvania.
Madison, WI – August 29, 2011 – Research seeks new weapons against cancer with new drugs lethal only to cancer cells and a super-sensitive urine test for detecting cancer early.
“Can you imagine a time when a patient could choose a preventive drug over having their stomach completely removed?” asks Karen Chelcun Schreiber, Board Chair for No Stomach For Cancer, Inc. “The work of Dr. Guilford is extremely promising for the futures of families who carry a mutation in the CDH1 gene which leads to the development of stomach cancer.”
A research team in New Zealand, lead by Dr. Parry Guilford from the University of Otago, Dunedin was awarded a 3-yr research grant from the Health Research Council of New Zealand (HRC) to continue work on drugs that are selectively lethal to cancer cells.
“Most cancer drugs cause some damage to normal tissues as well as tumors. The resultant side effects limit the amount of drug that can be used to treat the cancer and consequently limit the drug’s overall effectiveness,” says Dr, Guilford.
Healthy cells produce E-cadherin, a protein that suppresses tumor growth, but the gene that produces E-cadherin is often ‘switched off’ in cancer cells. Dr. Guilford and his team are searching for compounds that will destroy cells lacking E-cadherin, but not healthy cells with normal levels of the protein.1
Dr. Guilford explains, “The complete loss of a protein such as E-cadherin from a cancer cell exposes a vulnerability that we plan to target in this research project funded by the NZ Health Research Council. We believe drugs that kill cells that lack E-cadherin will have a very high selectivity for tumors and will cause much less ‘collateral damage’ than conventional drugs. This should translate into much more effective drugs with fewer side-effects.”
People who inherit the CDH1 genetic mutation are at high risk for developing Hereditary Diffuse Gastric Cancer (HDGC), lobular breast cancer and colon cancer.
“For HDGC families, we hope that this will provide a treatment for CDH1 mutation carriers who have developed either stomach or breast cancers. In addition, since E-cadherin loss is a common event in sporadic (non-familial) stomach and lobular breast cancer, these new drugs should have very broad utility,” adds Dr. Guilford.
Early detection is also key to stopping the spread of cancer yet most tumors begin to spread well before any symptoms become obvious. Dr. Guilford’s team is also working on a new test for prostate and bladder cancer that is so sensitive, it can detect just a single cancer cell that is washed out in the urine.
“There may also be an opportunity to use this class of drug to prevent the development of cancers in mutation carriers who have opted for surveillance rather than prophylactic surgery, says Dr. Guilford.”
“This strengthens my hope for my grandchildren and the future generations of families throughout the world, that they will not have to choose life without a stomach to save themselves from this deadly disease,” says Chelcun Schreiber.
Dr. Guilford serves on the Scientific Advisory Council for No Stomach For Cancer, Inc. Karen Chelcun Schreiber is Board Chair and founder of No Stomach For Cancer, Inc.
No Stomach For Cancer supports research and unites the caring power of people worldwide affected by stomach cancer. They advance awareness and education about stomach cancer, including Hereditary Diffuse Gastric Cancer (HDGC), provide a support network for affected families, and support research efforts for early detection, screening and prevention of stomach cancer. Learn more at their website www.nostomachforcancer.org
1Health Research Council of New Zealand, Research seeks new weapons against cancer with a super-sensitive urine test and new drugs lethal only to cancer cells
Camden Linstead and his brother, Christopher Lance, of Peoria, IL are traveling to the UK on August 2, 2011 to join other family members and friends on a 200+ mile trek across England to raise awareness about stomach cancer, and to raise funds for No Stomach For Cancer, Inc., an organization that helped their family through some tough times.
The coast to coast trek will take 14 solid days to complete and begins in St Bee’s on August 5, 2011. The route leads them to their final destination of Robin Hoods Bay on August 18, 2011.
The Linstead family is affected by Hereditary Diffuse Gastric Cancer (HDGC), caused by a genetic trait which predisposes them to this deadly type of stomach cancer.
Camden, age 25, underwent a total gastrectomy in July of 2010 at age 24, having his stomach completely removed due to a gene mutation that puts him at high risk of developing this disease. He lost his father, aunt, grandmother, and great-grandmother to HDGC. Another brother, uncle, aunt and cousin have all had the same life saving surgery.
The past two years have been difficult for the family. “Along this journey an amazing organization called No Stomach For Cancer has aided all of my family, here and in the UK, providing information and emotional support. We could not have gotten through this without their help,” said Camden. “I am hiking across England to help others by raising awareness about stomach cancer and to raise funds along the way to donate to this amazing organization so they can continue to provide services to other families going through similar situations – so they don’t have to feel like they are in the dark, and that there is a light at the end of the tunnel”.
“Stomach cancer is the second leading cause of cancer death worldwide,” said Karen Chelcun Schreiber, Board Chair of No Stomach For Cancer, Inc., a nonprofit organization based in Madison, WI with a mission focused on fighting stomach cancer. “The Linstead family knows firsthand about the importance of awareness, education, and family support to fight this devastating disease. They are an extraordinary family, strong and committed, and we are delighted that they have chosen to become involved and take action to support this very important work. We are excited to follow their trek from afar.
For more information, or to make a donation, visit www.nostomachforcancer.org
Map of Camden’s trek, from the Irish Sea to the North Sea
The United States Senate has passed a resolution designating November as Stomach Cancer Awareness Month. The resolution was introduced and presented by Senator Russ Feingold (D-WI) and co-sponsored by Senator Dick Durbin (D-IL).
A Wisconsin family with a rare genetic trait that predisposed them to a deadly type of stomach cancer founded the nonprofit organization No Stomach For Cancer, Inc. and has spearheaded the effort to get the resolution passed.
“Stomach cancer is the second leading cause of cancer death worldwide,” said Karen Chelcun Schreiber, president of the board of directors of No Stomach For Cancer and a Madison resident. “In 2010 alone over 10,000 Americans will lose their life to this cruel disease. I’m delighted that the US Senate recognized the need for public awareness, education and research funding to support early detection and improved treatments for stomach cancer.”
“November is a good fit for Stomach Cancer Awareness Month because the Surgeon General has committed to making Thanksgiving Day National Family History Day, emphasizing the importance of knowing one’s hereditary risks for disease. There is also a great deal of focus on food, nourishment and family at this time of year, and that can be challenging for people dealing with stomach cancer.”
Cindy Chelcun of Stevens Point lost her husband, Greg Chelcun, to hereditary diffuse gastric cancer (HDGC). “Greg was a seemingly healthy and vibrant man with very few symptoms to alert him that he harbored this deadly gene which caused his cancer. After genetic testing we discovered that most of our family members also had this gene and are at an extremely high risk for this disease. Thankfully, we were able to pre-empt the disease with preventative stomach removal surgery that will save the lives of my children and other relatives.”
“We are grateful for the Senate’s support in designating November as Stomach Cancer Awareness Month”, added Karen Chelcun Schreiber. “I’m hopeful this will help many families.”
For more information, visit www.nostomachforcancer.org
The United States Senate has passed a resolution designating November as Stomach Cancer Awareness Month. The resolution was introduced and presented by Senator Russ Feingold (D-WI) and co-sponsored by Senator Dick Durbin (D-IL).
“Stomach cancer is the second leading cause of cancer death worldwide,” said Karen Chelcun Schreiber, president of the board of directors of No Stomach For Cancer, Inc., a nonprofit organization that was founded by the Chelcun family after suffering several losses from stomach cancer. The family discovered that they had a rare genetic trait that predisposed them to a deadly type of the disease.
No Stomach For Cancer spearheaded the effort to get the resolution passed. “In 2010 alone over 10,000 Americans will lose their life to this cruel disease. I’m delighted that the US Senate recognized the need for public awareness, education and research funding to support early detection and improved treatments for stomach cancer.”
“November is a good fit for Stomach Cancer Awareness Month because the Surgeon General has committed to making Thanksgiving Day National Family History Day, emphasizing the importance of knowing one’s hereditary risks for disease. There is also a great deal of focus on food, nourishment and family at this time of year, and that can be challenging for people dealing with stomach cancer.”
“We are grateful for the Senate’s support in designating November as Stomach Cancer Awareness Month”, continued Chelcun Schreiber. “I’m hopeful this will help many families.”
For more information, visit www.nostomachforcancer.org
Today I met my first nonbeliever. Someone who hadn’t seen me around in a while, and asked where I’d been. ‘Oh, I was out of the office for a while, I had to have surgery….’
Non-Believer: Oh my, what’s wrong, is everything ok?
Me: Yeah, I actually had to have my stomach removed!
Me: I had my stomach removed.
NB: Oh like part of it, like a stomach staple
Me: No, I had the whole thing removed
NB: No you didn’t
Me: Yes I did
NB: (pause) No you didn’t!
It was not quite as blunt as that, but not too far off either. This person clearly didn’t believe that I was telling the truth, or that a total gastrectomy was possible. I think I convinced NB after about 5 minutes or so, but I still sensed this person was not entirely convinced. I guess it does sound pretty ridiculous, to have your stomach taken out. I haven’t told a lot of people about the surgery who are completely unfamiliar with me or my family’s situation, so I imagine this is a scene that may replay itself more in the coming months. Luckily I’m pretty persuasive, and if all else fails, I have the battle scars to prove it!
By Brian Chelcun
Why don’t I feel normal? I know it’s still early, but I thought that once I started doing normal things – eating, working, going out – that I would feel like I was getting into my routine, into my life, back to normal. But I don’t, I feel uncomfortable and unsettled. I have been working so hard to get my body readjusted and healthy again, I wonder if emotionally I’m just way far behind. Some of it I know is thinking about my Dad and starting to cope, in earnest, with losing him. But it’s more than that – I know I didn’t have brain surgery, but I honestly feel (and this sounds ridiculous in my head as I am typing) – I feel like a part of my personality was in my stomach. And that part got cut out too, and now I don’t feel like me. I’m different, it’s different, everything has changed. And boy I wish the pathologist could find whatever I lost on one of his slides, but I don’t think it’s quite that easy.
(a few days later)
Well what do you know. Many thanks to Mom’s friend Stephanie for sending me the following article on the enteric nervous system and the science behind why I might feel like I lost a bit of my personality as one would during brain surgery. Definitely check it out, it’s fascinating: The Other Brain Also Deals With Many Woes
By Brian Chelcun