With rectal cancer, you better have a sense of humor.
That’s according to Judy Caswell, 63. She’s a rectal cancer survivor with an amazing sense of humor. Every time she comes for a checkup, she brings a handmade card or homemade cookies for her medical team. She even bought anatomically correct cookie cutters so she could make colon-shaped cookies.
When first diagnosed in 2016, she was embarrassed to talk about it. Now, she said, she has a hard time knowing when to stop talking about it. She wants others to know (and heed) the warning signs. (See sidebar.) And she wants survivors to know about physical therapy that may help them reclaim their lives.
After radiation treatment, “I was using the bathroom 20 times a day,” Caswell said in her typically no-holds-barred fashion. “If I was going to be out for long periods of time, I didn't eat because I worried I wouldn’t be able to make it to the bathroom.”
That was before the Belmont, North Carolina, marathon runner learned about pelvic floor therapy. Through Novant Health – where she was treated – she’s part of a colorectal cancer support group. Pelvic floor therapist Virginia Serruto was the guest speaker one day, and what she said resonated with Caswell. “It was such an eye-opener,” Caswell said. “I knew men and women sometimes went to pelvic floor specialists for bladder issues. I didn’t know they worked with people who had colorectal cancer.”
Think a pelvic health physical therapist might help? Talk to your primary care provider.
Caswell started physical therapy with Serruto in March 2022. She began going weekly at first and now sees her for monthly tuneups. Patients may begin seeing small improvements right away, but Serruto warns this is “not going to be an overnight fix.” She typically sees patients anywhere from eight weeks to about six months.
Serruto and Caswell immediately bonded over their passion for running. “I never want to tell a patient that they can't do something they love,” Serruto said. “Because you want to feel like yourself, right?”
Living with ‘a new body’
The post-cancer-treatment issues Caswell was having – primarily a frequent and urgent need to have a bowel movement – are common for those who have had pelvic surgery or undergone pelvic radiation.
“After you've gone through the regime, you kind of have a new body,” Caswell said.
And the urgency issue? “I've heard of people who asked to go back to an ostomy bag because at least they felt that was predictable. I'm six years out and was still having these issues.”
An ostomy is a surgical procedure that changes the way urine or stool leaves the body. It reroutes waste from its usual path into a pouch worn by the patient. An ostomy can be temporary or permanent. Caswell’s was temporary. She had an ileostomy reversal surgery in 2017.
Rectal cancer warning signs
See your health care provider if you experience any of these symptoms:
- A change in bowel habits, such as diarrhea, constipation or more frequent bowel movements.
- Rectal bleeding or blood in stool.
- Narrow stool.
- A feeling that you still need to “go” even after emptying your bowels or a feeling you need to go but nothing passes.
- Persistent abdominal pain.
- Unexplained weight loss.
- Weakness or fatigue.
For these patients, Serruto employs myofascial release. It’s a type of PT used to treat myofascial pain, a chronic pain disorder caused by sensitivity and tightness in the tissues that surround and support muscles.
Symptoms interrupt marathon trainingBefore her cancer diagnosis in 2016, Caswell ignored her symptoms – mainly the urgency issue. She attributed them to running a lot of races with her older son, Nick, now 30. “We were training for a marathon, and I was really pushing myself,” Caswell said. “I waited almost four years before I went to the doctor, and it was only because my symptoms had overtaken everything. I couldn't keep food in.”
Caswell hadn't been to a doctor in over 20 years. But she couldn’t train with her digestive problems. In 2016, she had an endoscopy and a colonoscopy and discovered she had stage 3 rectal cancer.
“My surgeon, Dr. Robert Stevens, never scolded me for putting everything off,” she said. “I've always taken really good care of myself. I didn't see how this could be happening.”
Stevens performed a lower pelvic resection on Caswell and put an ileostomy in. Prior to surgery, Caswell had daily oral chemo and radiation with the goal of shrinking the tumor to make surgery a bit easier. Next came daily radiation for six weeks along with seven months of chemo infusions.
She didn’t let any of it slow her down. A nurse helped her figure out how she could still run and swim with the ostomy bag.
A generous benefactor
Community and team member donors helped make this program possible through Novant Health foundations. Click here to connect with your local foundation team to learn more, or make a gift to help save and improve more lives today.
And she’s found many ways to do that. Caswell became a regular donor to the Novant Health Foundation. She makes a gift every year and even consults with her medical team to find out what’s currently on their “wish list.”
Caswell donated a consultation room in the Novant Health Agnes B. and Edward I. Weisiger Cancer Institute for patients and their families to meet with doctors. It’s the kind of space she wishes had been available when she was undergoing treatment. Instead, her husband, Rick, would come in the exam room after Caswell’s appointment with her doctor, and they’d consult there.
“During a consult, you’re supposed to be able to focus on your care plan,” said Amy McKinney, a philanthropy manager with the Novant Health Foundation. “It used to be that the consultation – often with family involved – happened in the same room where you’d just had a very invasive exam. We really needed a separate room, especially for our colorectal patients. They can now gather themselves, get dressed, leave the room where they’ve been examined and go to a different room – the Judy Caswell room – with their family. It’s a huge improvement.”
More recently, Caswell made a donation to help offer pelvic floor therapy to more colorectal cancer patients. McKinney said the gift will help in three ways:
It will fund training for PTs who want to study pelvic floor therapy but don’t have the funds to pay the tuition themselves.
It will help patients who want pelvic floor PT but whose insurance doesn’t cover it.
- It will fund community outreach so Novant Health clinicians can speak to community groups about the benefits of pelvic floor therapy for cancer patients.
“Judy’s gift will have an impact for years to come,” McKinney added.
McKinney and her team have been touched by Caswell’s generosity. Since she began giving in 2018, Caswell has donated a total of $12,000 to the foundation. “Judy has found a way to support her care team every year,” McKinney said. “She wants to ensure that every patient in the community has access to the treatments that helped her. She wants to improve the experience for other patients who might walk the same journey she has walked.”
Every gift matters, said Katie Spizzirri, senior philanthropy executive for the Novant Health Foundation. “The majority of the gifts we receive and steward are from people giving thousands of dollars – not millions,” she said. “Judy’s giving is the perfect example. She comes to the philanthropic table asking what she can do to have the most impact.”
Caswell is also involved with the colorectal cancer community. She’s part of the Colon Cancer Coalition, sponsor of the annual Get Your Rear in Gear run, as well as Fight CRC. “In meeting with colorectal cancer patients, the whole digestive/bathroom issue always comes up,” she said. It’s a very common problem.
Now Caswell has new mountains to climb. “My biggest challenge now is that my younger son, Chris, has been working with an athletic trainer,” she said. “He has threatened to beat me in the Charlotte half-marathon this year. He’s only 26. I tell him he may have youth on his side – but I have time.”
The Caswells are a close-knit family. Chris was living at home when his mom was going through cancer treatment. “It threw him off because he’d always seen me healthy,” Caswell said. “We scheduled a colonoscopy for him with Dr. Stevens, and they found precancerous polyps when he was just 21, which Dr. Stevens removed. Then we flew our other son down for a colonoscopy with the only doctor I totally trust – Dr. Stevens. And fortunately, he was fine.”
Once Caswell was assured her family was fine, she set out to help ensure her community was fine, too. Her activism and generosity are making a difference for people she’ll never even meet.