2017 CDH1 T-Shirt Sale is Here!!

We are so excited to kick off our 2017 t-shirt sale and start accepting orders! This shirt was designed by my amazing cousin-in-law, Kristi Sasser. I mean, she is seriously talented and we are so lucky she always jumps in to come up with these awesome creations! We will be accepting orders for the next two weeks (until November 30th). Like last year, you can pay myself, Nicole, Rhonda, Benny Jo or any of our other family and friends in person with cash or check or you can pay via PayPal or Venmo. We will offer shipping across the United States and all over the world again, last year we shipped to Canada, Australia, and New Zealand. Last year we sold about 150 shirts and sent $1500 to Dr. Guilford's at the University of Otago where he is working on an oral medication to kill off mutated stomach cells in patients with a CDH1 mutation, eliminating the need for future generations to undergo a prophylactic total gastrectomy. We would love to surpass 200 shirts this year and send over $2000 for this vital research. All the options and pricing info is included in the picture below, but please feel free to message me on Facebook or email me at jessica.j.sasser913@gmail.com if you have any questions. 

2017 Night of Healing

So we were incredibly honored to share our journey with CDH1 and total gastrectomies Saturday night at No stomach for Cancer's Night of Healing. Here is a video of our speech that night. As we mentioned during our talk, we believe God chose us for this and perhaps it was show others that their is hope for a wonderful, happy, healthy life after such a major surgery and lifestyle change.

What's So Special About November?

In the month of October it's so wonderful to see all the pink ribbons, pink socks on NFL players, pink hair extensions, and all things pink to raise awareness for breast cancer. Having lost our mom to lobular breast cancer, October has always been a special month for us to see people celebrate those who have battled this awful disease and honor those whose lives were cut short by it. But for the past two years the month of November has taken on a special meaning to us too. You see, November is stomach cancer awareness month.

Let’s talk about stomach cancer for a second. Most people probably don’t spend their lives worrying about stomach cancer. In fact, you probably only worry about “the biggies.” According to the American Cancer Society here are the top 10 cancer diagnosed in the United States:

1. Breast
2. Prostate
3. Lung
4. Colorectal
5. Uterine
6. Bladder
7. Melanoma
8. Thyroid
9. Kidney and Renal
10. Non-Hodgkin’s Lymphoma 

For many of these we have guidelines in place for monitoring and recommendations for how to prevent them; no smoking, wear sunscreen, limit use of hormonal birth control, etc.  An average person really only has about a 0.8% chance of being diagnosed with stomach cancer in their life. So why worry about something you have such a low chance of ever developing? Because stomach cancer is incredibly deadly. Even though the actual incidents diagnosed are so low, it actually has the third highest mortality rate. Only about 30% of patients will survive past the 5 year mark. And that’s only the stats for here in the US. Globally, stomach cancer is the fifth leading cause of cancer and the third leading cause of cancer deaths, with only about 10% of patients surviving past the five year mark.

Why is stomach cancer so deadly you may ask? It’s because most patients are either asymptomatic (showing no noticeable signs) or have nonspecific symptoms in the early stages, symptoms that can be written off as other things, like heartburn or a nagging stomach bug. For most patients, by the time symptoms occur the cancer is often in advanced stages and has metastasized to other areas of the body. What are the symptoms you may ask? Early cancers may be associated with indigestion or a burning sensation like heartburn, abdominal discomfort or loss of appetite. Advanced cancer can cause weakness, fatigue, bloating of the stomach with meals, nausea and occasional vomiting, diarrhea or constipation. More severe symptoms may include weight loss, vomiting blood or bloody stools and difficulty swallowing. Diagnosing stomach cancer often includes a physical exam, an endoscopic exam, or a CT scan. There is also a lot of research into breath tests as a minimally invasive way to identify stomach cancer.

There are several factors that can lead to gastric cancer. It is twice as common in men, so there is a thought that estrogen may aide in protecting women from the development of this form of cancer. The presence of an infection called Helicobacter pylori (aka H. pylori) is a risk factor in 65-80% of all gastric cancers. As with other cancers, smoking and obesity are also correlated with an increased risk of stomach cancer. Diet is not a proven factor, but some foods, like smoked foods, salt rich foods, red meat, processed meats, and pickled vegetables appear to be associated with a higher risk of stomach cancer. Lower rates of stomach cancer are tied to a Mediterranean diet or a diet filled with fresh fruits, vegetables, citrus, and antioxidant rich foods.

There there’s genetics. About 10% of cases run in families and between 1-3% of cases are due to a inherited genetic syndrome, like hereditary diffuse gastric cancer (HDGC) syndrome. HDGC is tied to a mutation of the CDH1 gene. This is the genetic flaw that led Nicole and I to learn so much about stomach cancer. Current estimates are 1 in 9 million people carry this genetic mutation, but these people have an 83% risk of developing HDGC. That staggeringly high number is what led us to the decision to prophylactically remove our stomachs 18 months ago. And sure enough, even though we showed no real symptoms and had just had a clean endoscopy with 40 biopsies each, we both had stage 1 HDGC. It’s so crazy to know that there was absolutely NOTHING we could have done to prevent this. There was nothing we could have eaten or not eaten, no magic pill we could’ve taken. One simple little mix-up in our genetic code and we were destined to have cancer.

It’s hard sometimes to think of ourselves as stomach cancer survivors. We never underwent crippling chemotherapy or radiation treatments. We never even knew we officially had cancer until it had already been removed from our bodies. But in the most technical sense of the word, we are survivors. It’s crazy that in this day and age, with so many advances in science and medicine, that diagnosing stomach cancer early is still so difficult to do. For those of us who carry the CDH1 mutation, we have no real option for preventative screening, life without a stomach is our only shot at warding off cancer. How insane is that?!

Hanging with our stomachless pals at Night of Healing!

We had the honor of being at the Spotlight on Gastric Cancer symposium at City of Hope in Los Angeles, CA this weekend. We heard leading medical professionals talk about advancements in therapies and surgical approaches and we also heard from patients who have fought this awful disease with extraordinary courage, people who have lost loved ones after a long battle and others who are preparing to undergo a prophylactic total gastrectomy to stop cancer in its tracks. We bonded with people who can be described as nothing less than amazing, people we’ve “known” online for almost two years now but finally got to meet in person. And we got to share our own story of the wonderfully normal life we lead now (I will share a video of our speech soon!). We left LA on Sunday with nothing put hope for the future. You see the day is fast approaching when Caden, Liam and Andy will be tested for the CDH1 mutation and there is a good chance they will have to look stomach cancer square in the face and make some hard choices. This is why Stomach Cancer Awareness month means so much to us. We desperately need advancements in screening and treatments so that our babies have better options than we did.

Later this week we will unveil our new t-shirt design and start accepting orders. Just like last year, the funds raised will be sent directly to Dr. Parry Guilford in New Zealand who is currently working on an oral preventative chemo to kill off mutated stomach cells, replacing the need for a total gastrectomy for CDH1 patients. We are so excited for this year’s shirt, they look awesome! Last year we sold around 150 shirts and sent $1500 to Dr. Guilford, our goal this year is 200 shirts.

We can’t wait till we live in a world where ALL cancer is easy to detect and cure. Until then,  every November we will rock our periwinkle to support stomach cancer awareness.