A family deals with a rare cancer
Jess MacKenzie with her mother, Jane (center), and fataher Bob; photo submitted by MacKenzie family
Virginia Tech student Jess MacKenzie will probably celebrate her 21st birthday like many college students do: by going downtown for dinner and drinks with her friends.
There will be one big difference between her 21st birthday and her classmates’ 21st birthdays: Jess won’t have a stomach to process birthday cake or anything else she eats or drinks. Her stomach was removed earlier this month, shortly after she turned 20, after doctors found out she had a rare form of stomach cancer caused by a genetic mutation.
MacKenzie isn’t satisfied with just stopping her own cancer. She’s going on a social media campaign to raise awareness of her family’s history with stomach cancer, with the eventual goal of being featured on The Ellen DeGeneres Show. She channels her energy into running “Beads for Bellies,” which sells homemade bracelets to help fund stomach cancer research.
MacKenzie, of New York, is the captain of “Team No-Belly,” as her family calls itself. And she’s serious about educating others about stomach cancer.
The genetic mutation CDH1 causes Hereditary Gastric Diffuse Cancer, which makes up less than 1 percent of all stomach cancer deaths. The mutation was first discovered in 1998 in a familial tribe of indigenous people in New Zealand, according to accepted medical research of the disease.
Only a handful of families around the world are known to carry the mutation, but among those families, the mutation can be devastating. Many family members die before or around age 40 of inexplicable stomach cancer.
That’s what happened to one of Jess MacKenzie’s aunts, who died of stomach cancer in 2010 at age 43. Jess’s paternal great-grandmother died of stomach cancer at age 36 and some of her great-aunts and uncles on her dad’s side also died of stomach cancer in their early 40s.
Doctors have learned how to test for the genetic mutation that points toward the probability of contracting stomach cancer. When the current members of the MacKenzie family decided to get genetic testing this January, they found out that Jess MacKenzie’s dad, Bob MacKenzie, as well as his mother and one of his two surviving sisters all tested positive for the mutation.
In March of this year, Bob MacKenzie, his mother and his surviving sister all had total gastrectomies, in which their stomachs were removed, at Memorial Sloan-Kettering Cancer Center in New York.
Originally, Jess MacKenzie wasn’t planning on getting tested for the mutation until she had completed schooling at Tech. But she wasn’t comfortable with living in the dark.
“In May, I panicked and I just had to be tested,” she said. “Two weeks later, I came back as positive for the mutation.”
Total gastrectomies typically aren’t recommended to people younger than about mid-20s. After consulting with doctors, MacKenzie said she initially decided to schedule the gastrectomy for age 25. She returned to Tech in August to start her sophomore year. But a few weeks into the semester, she started feeling depressed and nervous about her health.
“I stopped being able to function and I couldn’t get out of bed,” she said. She knew the genetic mutation meant there was an 80 percent chance that cancer cells were already growing in her stomach lining and a 60 percent chance that she’d develop lobular breast cancer as well.
She decided to have an endoscopy done to test for cancer cells. Two foci of cancer were already visible in her stomach lining.
“It’s really hard to detect,” Bob MacKenzie, adding that it’s normal for an endoscopy to come back as negative for cancer even if someone with CDH1 does have cancer foci in their stomach lining.
Jess MacKenzie decided to leave Tech and undergo the gastrectomy as soon as possible.
She intentionally gained about 30 pounds because she knew she might have a hard time adjusting to eating post-surgery.
During a gastrectomy, the patient’s stomach is totally removed and the esophagus is connected directly to the small intestine.
MacKenzie was able to look to her dad, aunt and grandmother who all had gastrectomies in March for guidance.
“My dad eats slowly all day long,” she explained. “He’s doing really well. It’s encouraging.”
Bob MacKenzie hopes that having seen her family experience the gastrectomies will help Jess know what’s normal during her own recovery process. “She’s seen three vastly different ways of recovering from this,” he said.
Jess MacKenzie underwent the curative gastrectomy at Sloan-Kettering on Nov. 8. Post-surgery, doctors discovered 13 cancer foci in her stomach.
Halfway through her post-surgery hospital stay a few days ago, MacKenzie said she was happy and doing well. She said she received flowers from singer Meat Loaf and many friends and family members had visited her.
“I do need to learn how to eat again,” she said. But she was also up and walking more than a mile per day around the halls of Sloan-Kettering.
MacKenzie will have to adjust to how much she can eat and when. She will also have to use in vitro fertilization if she decides to have children in the future.
But, Bob MacKenzie pointed out, Jess is now cancer free, which means any children she does have in the future will be too if she takes precautions not to pass the CDH1 mutation to them.
“Now she has the power to stop it from our line,” Bob MacKenzie said. “We can stop it here.”
Before and after her surgery, Jess MacKenzie has been active on Facebook and Twitter, updating her personal Facebook page as well as the fan page “Send Jess to Ellen,” which reaches out to almost 1,700 people. She’s tweeting from @NoBellyNoProb to different celebrities to raise awareness of her surgery.
MacKenzie said she loves Ellen DeGeneres and thinks going on The Ellen Show would be a great way to help others learn about CDH1 and stomach cancer.
She blogs on her personal blog at Indigestibly.com and created video blog entries each day of the week she spent in the hospital.
MacKenzie has also put energy into Beads for Bellies, which started as a small charity fundraising project with her family making bracelets.
The project has grown and MacKenzie said the effort has raised almost $6,000 for stomach cancer research group No Stomach for Cancer.
“I never expected it to go this much,” MacKenzie said.
Initially, the MacKenzie family began creating beaded bracelets to calm themselves down and focus their minds on something creative.
Karen Chelcun Schreiber, the founder of Wisconsin-based No Stomach for Cancer, said her family is also affected by CDH1. She, her mother, three of her brothers, several of their children and one of her sons all have the genetic mutation.
Chelcun Schreiber started No Stomach for Cancer after realizing how little information was available to affected families. From there, the charity began to connect affected families with one another.
“It’s devastating when you get a diagnosis,” Chelcun Schreiber said. “Unless you’re living this, it’s really hard to understand it.”
She said it has helped for her family and for others to talk with people who have had positive outcomes from their treatments.
Chelcun Schreiber said doctors and researchers estimate there’s about 150 families world-wide affected by CDH1 and Hereditary Gastric Diffuse Cancer, but she suspects there might be more who are not yet identified.
The MacKenzies also participated in No Stomach For Cancer’s first annual international walk on Nov. 3 to raise funds and awareness about different types of stomach cancer just before Jess’s surgery. According to BeadsForBellies.com, No Stomach for Cancer raised more than $16,000 internationally during the walk.
“We want to bring stomach cancer into the public eye,” Chelcun Schreiber said. “The goal is to unite in spirit and walk for stomach cancer awareness in 10 countries.”
Chelcun Schreiber said she hopes someday for stomach cancer awareness to be at the same public level as breast cancer awareness.
“I think Jess is doing a great thing by sharing her story,” Chelcun Schreiber said.
Through Jess MacKenzie’s online outreach, she has been candid and open about her health; and expressive of her emotions—from funny and upbeat to serious and sad. She hasn’t been hesitant to post photos of herself during her week-long hospital stay or video blog entries in which she begins to cry. But mostly her photos show a big grin and her video blogs capture her bubbly laughter. Her Facebook posts feature many happy exclamation points.
She’s insistent on using every aspect of her personal experience to educate the world about Hereditary Gastric Diffuse Cancer.
“A lot of our doctors has no idea what any of this was,” she said. “November is Stomach Cancer Awareness month, but nobody does anything for it. Nobody knows about it.”
“My normal primary care doctor looked at me like I was crazy when I mentioned genetic testing,” Bob MacKenzie said. “It took them months to figure out what it was. I hope for doctors to become more aware.”
“It’s a deadly and scary disease,” Jess MacKenzie said. “People should know their family history and if more than two people have had stomach cancer at a young age, they should get tested.”
MacKenzie plans to return to Tech next fall to continue her degree in creative writing. In the spring semester, she said she will probably take a few classes at a community college near her home in Astico Park in Long Island. And she said she will keep representing Team No Belly.
“Looking back, I feel so much better now than I did,” MacKenzie said after her surgery. “I’m so thankful they found the stomach cancer. The surgery hurts, but it’s totally worth it to save your life. It’s not looming over me anymore.”
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To find out more or join Jess MacKenzie in her battle against Hereditary Gastric Diffuse Cancer:
- On Facebook: “Send Jess to Ellen” and “Beads for Bellies”
- On Twitter: @NoBellyNoProb
- On YouTube: www.YouTube.com/User/SendJessToEllen
- Online: www.BeadsForBellies.Com and www.Indigestibly.com, www.NoStomachForCancer.org (@NoStomach4Cancr on Twitter or “No Stomach for Cancer, Inc.” on Facebook)
The Roanoke Times | 381-1662
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An incredible story about an inspiring young woman and her family. I have been following Jess’ YouTube updates before and after her surgery, and I am amazed at her continual strength and sense of humor throughout all of this. A truly remarkable girl!
Comment by Dina Santorelli — November 25, 2012 @ 11:13 am
What an amazing story…and what an amazing family. Wishing them all the best :)
Comment by Nancy — November 25, 2012 @ 1:00 pm
We are supporting Jess’ efforts to target social media. We re-posted her story on our facebook and twitter pages! We encourage other hokies to do the same.
- Fralin Life Science Institute at Virginia Tech
Comment by Cecilia Elpi — November 26, 2012 @ 10:32 am