As part of StoCare’s Diary of an Ostomate series, we had a chat with Dan ‘Dry Dock’ Shockley, an ostomate from the US who has a particularly fascinating and inspiring story.
Dan was diagnosed with AFAP in 2012, a rare form of hereditary colon cancer. His attitude to life can be summed up with this quote: “My mantra is a positive spin on a bleak diagnosis: ‘Always forge ahead with a purpose.’ If you take the first letter of each of those words, and what’s it spell? AFAP.”
Dan’s background
Dan is a retired US Navy veteran, who had a 22-year naval career beginning in 1981. He served on board seven different ships, three of which were deployed to the Persian Gulf.
“There were many nights in the Persian Gulf that you slept with one eye open because you didn’t know if your ship was gonna get hit by a missile. You had no idea what was going to happen,” he told us.
He spent two years in Bahrain before retiring in September 2003. He later registered with the Veterans Administration Healthcare System, who recommended he schedule a routine colonoscopy when he turned 50. He had no idea this would change his life forever.
Dan’s diagnosis
Before his first (and only) colonoscopy, Dan had no symptoms to suggest he was unwell. However, the doctor found over 100 polyps embedded throughout his colon and anus. He believed this to be hereditary colon cancer syndrome and referred Dan to a certified genetic counsellor.
He underwent genetic testing and waited six weeks for the results. During this time, he mentally prepared himself for what may be to come and says his naval experience helped him to do this: “I had absolutely no idea about any of this, no family history or anything, but in my 22-year military experience, I adopted a Marine mantra. Adapt, improvise, overcome. We plan for the worst and hope for the best.”
Instead of worrying, he did as much research as he could: “I went into battle mode, in a positive way, because I wanted to break this down into three phases: Read about the mutation, read about the type of surgery, and read about life as an ostomate.”
The results confirmed that Dan had a defect in his adenomatous polyposis coli (APC) gene, which had caused Attenuated Familial Adenomatous Polyposis (AFAP) – estimated to impact 0.03% of the global population.
Dan’s doctor later revealed to him that he had originally planned to retire well before he performed Dan’s colonoscopy. “So I said, ‘Well, doc, you know why you didn’t retire? Because you needed to save my life.'”
What is hereditary colon cancer?
Hereditary cancer is when a cancer gene is passed from a parent to a child. Around 5-10% of bowel cancer cases are thought to be caused by a change in a known gene. Sometimes they have no symptoms and only present later in life. The most well-known genetic syndromes linked to bowel cancer are FAP (Familial Adenomatous Polyposis), MAP (MUTYH Associated Polyposis) and Lynch Syndrome. The latter is named after Dr. Henry Lynch, the first person to consider the link between cancer and genetics.
He later discovered a subvariant of FAP called AFAP – Dan’s diagnosis. Dan and Henry became good friends. Lynch reviewed Dan’s DNA test results and told him that he had a rare case of AFAP. He encouraged him to have routine endoscopic surveillance and would review the pathology reports.
Lynch passed away on 2nd June 2019 at 91 years old, and up until a month before he passed away, he was still researching at Creighton University.
Dan’s treatment
At Dan’s age, there was a 70% likelihood of the polyps developing into cancer. One of them was an eight-centimeter high-grade dysplasia. “Technically it’s not cancer, but that’s as close to stage 0 cancer you can get,” Dan said.
The treatment was a total proctocolectomy with a permanent ileostomy. The longer it was delayed, the greater the chance of developing cancer. Whilst ostomy surgery is often the last option for treatment after debilitating symptoms, Dan was in good health. This may have made some people sceptical about having the surgery, but not Dan. Find out more: Why would you need a stoma bag?
“I knew it was in my best interest to have the surgery just to eliminate the possibility of getting colon cancer. So I said, ‘I want the surgery.’ My colorectal surgeon said, ‘Daniel, that’s what I thought you’d say. I’ve already scheduled your surgery. It’s two weeks from today.'”
Dan’s recovery
Dan underwent successful surgery in 2012 and has since been living with an ileostomy. Despite the short timeframe between diagnosis and surgery, Dan was ready. He knew that any struggles he’d face would be nothing compared to if his polyps developed into cancer.
Having close contact with his genetic counsellor, his colorectal surgeon and Doctor Lynch helped. “Through the weeks and months, I was able to – no pun intended – digest all this. I felt real good about it.”
“Well, theory is one thing, but practical application’s another. So, I asked lots of questions and I continue to today,” he told us. He advises all ostomates to ask as many questions as they can.
Recovery is different for everyone and Dan’s was relatively short: “I was in hospital for 12 days. The wound nurse was in every day to see me. After another week and a half, I already had my bag change routine down. After all, it only takes 21 days to form a habit.”
He says that using his brain while his body was recovering helped a lot and advised any ostomates to do the same: “The mind is amazing.”
Dan’s life with a stoma
Unfortunately, this wasn’t the end of Dan’s struggle. During his routine endoscopic surveillance (as advised by Dr. Lynch) in 2021, a three-centimetre adenoma (non-cancerous tumour) was discovered in his jejunum. He needed a pancreas-sparing duodenectomy resection. “I didn’t have pancreatic cancer, nor did I have colorectal cancer,” he explained. “However, with this mutation, Dr. Lynch’s research through the decades has shown that prevention is key. Once you start seeing growths, you need surgery to remove them.”
Thanks to this effective prevention, Dan is now thriving. He is a passionate gardener and his surgeries haven’t stopped him from growing an impressive array of fruit and veg. He says he listens to his body and understands his limits. “A stoma is basically an artificial hernia, so you just have to be aware of that. You do have limitations. I don’t lift more than a certain amount of pounds and I don’t do things for a prolonged period of time.”
Having lived with his stoma for 13 years, he says he barely notices it anymore. “I don’t even think about it,” he said, offering a beacon of hope for early ostomates who may be struggling to adjust to their stoma. Although he has experienced struggles with his ileostomy, he doesn’t let them get him down. “I don’t look at a challenge as an obstacle, I look at it as an opportunity – what do you do with it?”
Dan’s purpose
Dan was inspired by Dr. Henry Lynch’s dedication to cancer research. “When he passed away, I wanted to continue his legacy by educating medical students about AFAP and the importance of early detection in the hope of saving lives. If it wasn’t for his discovery, I may not be here. But since I am here, I see that as an opportunity to share my journey.”
“I’ve reached out to organisations and individuals globally throughout the last 12 and a half years. My purpose in life is to educate people about AFAP. There’s still very little information out there about this mutation. I figured if I start with the medical students, they’ll have that for the rest of their medical career and their lives, so they can share it.”
Dan is a live case presentation for the Molecular Foundations of Medicine course at Stanford University, one of the most prestigious universities in the world. He also works with universities and medical centres in Singapore, Algeria, India and Turkey, alongside many rare disease organisations and the United Ostomy Associations of America.
“I have probably 31-32 articles that I’ve been featured in, and about 20 podcasts I’ve been a guest on.”
“I just try to see what’s out there to help out, whether it’s hereditary colon cancer, ostomies, rare disease, even men’s mental health. Anybody who hears or reads about my journey, if it’s a source of inspiration or encouragement, then that’s awesome.”
Dan’s advice for ostomates
So, what advice would this veteran ostomate give to other ostomates?
Talk
Dan’s main advice is to talk. “I would suggest that they talk with their family members or close colleagues and their medical team – primary care, GI, if there’s a wound care nurse they have access to. There are organisations online as well.”
“Have a sit down with as many of them as you can and just ask lots of questions. I didn’t know any of this. I had absolutely no idea, it took me a long time.” He says that it’s a constant journey, so you should embrace the learning curve.
Be mindful
Dan said that when it comes to difficult situations, such as struggling with your health or finding out you need life-changing surgery, we have a choice to react or respond. “By responding, you gather information so you can make a logical decision. By reacting, you’d make a rash decision you may regret later.”
He emphasised the importance of acknowledging that your journey will be different from everyone else’s. “Everybody’s gonna have different experiences where they’re gonna have to think back to difficult things they’ve experienced in their lives. It goes back to reacting versus responding, how strong their faith and attitude is, how they’re going to adapt. It’s an individual journey.”
Be positive
Dan also encourages ostomates to embrace who they are and try to stay positive. “Humour is the best medicine,” he said. “I tend not to think about things I’m unable to control, such as medical conditions. What I can control is my positive attitude. After this many decades on God’s green earth, my positive attitude has brought me this far. Why change now?”
“It’s important to share some positivity – having an ostomy is nothing to be ashamed or embarrassed about. I’ve embraced it.” Read more: Quality of life in stoma patients
What’s next?
So what’s in the future for Dan? He says he is excited to continue sharing his story across the world. He is encouraging his family to get their routine colonoscopies in case the AFAP gene affects them too.
He will also continue to receive his own routine monitoring. “I’m going to be a patient at the Stanford University Cancer Center for the rest of my life. The director of the GI clinic and my surgeon at Stanford, no pun intended, know me inside and out!”
You can follow Dan on Instagram @dandrydock.
