1. What is the No Stomach For Cancer organization?

In 2009, after losing two family members to stomach cancer and learning about the CDH1 genetic mutation that increases the risk of developing the disease, Karen Chelcun Schreiber founded No Stomach For Cancer (NSFC). The goals of the organization were threefold: to advance awareness and education about stomach cancer, including Hereditary Diffuse Gastric Cancer (HDGC); to provide a support network for affected families; and to encourage research efforts for early detection, screening and prevention of the disease.

With over a million new cases occurring globally each year, stomach cancer, also called gastric cancer, is the fifth most common cancer in the world. In 2021 alone, an estimated 11,100 Americans will die from the disease. NSFC serves families around the globe and is a worldwide leader in raising awareness, advancing stomach cancer education, supporting research and assisting individuals and families affected by all forms of the disease.

NSFC also share information with the general public and across the medical community to promote earlier diagnoses in an effort to improve survival rates. They are particularly interested in increasing awareness of HDGC, an inherited cancer syndrome that leads to an increased risk for diffuse gastric cancer and lobular breast cancer. They also focus on supporting gastric cancer research to accelerate positive strides in the fight against this difficult disease.

To learn more about No Stomach For Cancer, visit www.nostomachforcancer.org.

2. What are the symptoms of stomach cancer that patients typically face? What is the long-term outlook for patients?

 Usually, stomach cancer grows slowly over several years causing few, if any, symptoms, making early detection very difficult. If vague gastrointestinal symptoms do occur, they may mimic other conditions, such as GERD, gastritis or peptic ulcer. However, the following symptoms should be discussed with a doctor who can perform tests to determine the cause:

  • Indigestion, heartburn or difficulty swallowing
  • Discomfort or pain in the abdomen
  • Nausea and vomiting and/or bloating after meals
  • Long-term diarrhea or constipation
  • Loss of appetite and/or unexplained weight loss
  • Weakness and fatigue
  • Vomiting blood or blood in the stool
  • Sense of fullness after eating small amounts

The long-term outlook for current patients is challenging. The five-year survival rate for Stage IV stomach cancer patients is roughly 4%, and the overall five-year survival rate is about 32%. The numbers are low because most cases are detected at a late stage when cancer has already spread outside the stomach. Cases that are detected at earlier stages have a better prognosis. The good news is stomach cancer rates are declining worldwide, largely due to a reduction in H. pylori infections and the use of salt preservatives, both of which can cause the disease. Better measures for detection and prevention also play a role in declining rates.

3. What are some of the biggest challenges patients and their families who have this condition deal with? Are there specific emotional or physical challenges?

Finding effective treatments can be difficult, as diagnosis usually does not occur in early stages when cancers are more treatable. The disease is typically treated with surgery, chemotherapy, radiation or a combination of these treatments. Surgical options depend on the extent of cancer within the stomach and include a partial or total gastrectomy (removal of part or all of the stomach). In a total gastrectomy, surgeons remove the stomach and replace it with the intestine, which acts as a new stomach. Radiation and chemotherapy may be used before or after surgery to target the stomach’s growing cancer cells.

Navigating life and nutrition after stomach removal can be challenging. After surgery, patients start off with a mostly liquid diet before slowly transitioning to larger quantities and different foods. Over time the intestine adapts, stretching a bit so more food can be eaten at one time. The new stomach delivers the food to the rest of the intestines for normal digestion. Achieving a healthy body weight can be a challenge, as malabsorption and early satiety can make it difficult to get enough calories to maintain or regain weight. The physiological effects of having a gastrectomy vary greatly from patient to patient. Some may need to avoid sweets and milk products while others can tolerate these foods.

Since the majority of cases are discovered in a late stage, patients and their loved ones are often faced with making end-of-life decisions shortly after diagnosis. They may experience a range of distressing emotions, such as sorrow, anxiety, anger and denial, while having to deal with complex care decisions for end-stage disease.

4. What resources does the organization offer patients and the medical community?

No Stomach For Cancer provides a wide variety of useful information, publications, meetings and other resources to help patients and families navigate the disease. One-to-one support is available from diagnosis to survivorship, helping each patient find the best path forward. Comprehensive patient guidelines for stomach cancer, along with many other useful resources on the organization’s website, give patients and their loved ones a better understanding of the disease and treatment choices. Patients can also attend the foundation’s Bi-Annual Spotlight on Stomach Cancer Symposium, which provides current information on stomach cancer as well as the opportunity to connect with others battling the disease.

In addition to providing a wealth of material for patients, the organization also works diligently to advance stomach cancer education within the medical and scientific realm by inviting physician and genetic counselors to their educational programs.

5. What outreach activities does the No Stomach For Cancer use to connect with patients?

 NSFC distributes facts and information on stomach cancer through its website, educational events, fundraisers and public relations initiatives. The organization is present on most social media, including Facebook, LinkedIn, Pinterest, Twitter, YouTube and Instagram.

6. What volunteer opportunities are available to help advance their mission?

No Stomach For Cancer is always looking for passionate, dedicated people who want to make a difference in the fight against the disease. From local awareness activities to project-based opportunities, there are many ways to help.

The organization holds an annual worldwide walk for stomach cancer awareness on the first Saturday of November, and being a Walk Organizer by creating an event locally is an excellent way to help raise awareness of the disease and generate funds for research. Volunteers can also become NSFC Ambassadors in their communities to educate the public on stomach cancer or organize a charity event. There are also opportunities for volunteers to donate their time in their area of expertise, such as accounting, legal, marketing, communication, social media, website content, resource development and governance. Additionally, volunteers who have been touched by the disease may choose to share their personal experiences with fighting stomach cancer or caregiving.

7. Where can patients get the most up-to-date information on new advances in stomach cancer?

Patients can access the most current information on stomach cancer on their website and social media, as well as their monthly newsletter.

8. What closing thoughts should readers remember?   

Advocate for your health and go with your gut instincts. If you feel something is not right and you are not getting the answers you need, do not give up. Be persistent. Continue to seek answers, and do not stop until you get them. The organization is here to support those affected by all types of stomach cancer, so please reach out to them so they can help you navigate this difficult journey.