“The benefit of the clinic is a holistic approach to the survivorship care that takes into account things that we as urologists don’t usually consider in our everyday patient encounters,” said Niels Johnsen, MD, MPH, assistant professor of Urology, Division of Reconstructive Urology and Pelvic Health, Vanderbilt University Medical Center.
The journey from prostate cancer surgery to regular three-month visits to the REACH for Survivorship Clinic at Vanderbilt University Medical Center has not been what was expected by Nashville native and Bellevue resident Scott Sullivant, 60, but could have been much different without the resources he had at his disposal.
Sullivant, a musician and commercial property manager, was diagnosed with prostate cancer at age 58 when his internist, William Martinez, MD, at Vanderbilt Health One Hundred Oaks, noticed that his PSA was starting to go up and referred him to David Penson, MD, professor and chair of Urology.
In Sullivant’s case, Penson and his surgical team did a great job of removing the cancer, but the story didn’t end there.
“I thought it was going to be over after the surgery. I did a discovery process with Dr. Penson, and also did my own research, and concluded that surgery was the best route for me because, based on the biopsy, it looked like it wasn’t too aggressive and we would just cut it out, and I would be done,” he said.
“But that’s not what happened. It was a difficult surgery. Most people wear a catheter for maybe a week; I had mine for a month. Dr. Penson always says, ‘You don’t want to be the one that I’ll remember, and I will never forget you.’”
Sullivant’s regular visits to the Survivorship Clinic, now in its third year, helped to make him whole again.
“I like to say the doctors healed me, but the Survivorship Clinic made me whole,” Sullivant said. “It is lifesaving. The Survivorship Clinic has addressed many other issues for me besides the typical long-term effects of incontinence and ED. The post-op pathology and tests confirmed my disease had metastasized to my spine, which added many new elements and treatments to my recovery. The help and advice I received from the Survivorship Clinic was invaluable.”
Prostate cancer is the most prevalent cancer diagnosis in men, with roughly 200,000 cases diagnosed every year. With a 99% survival rate after five years, there are more than 3.5 million prostate cancer survivors alive today.
Surgery to treat prostate cancer is common and also effective, but side effects like urinary incontinence and sexual dysfunction are quality of life issues that in many cases go overlooked.
Niels Johnsen, MD, MPH, assistant professor of Urology, Division of Reconstructive Urology and Pelvic Health, said VUMC is one of the highest volume prostate cancer treatment hospitals in the country in terms of robotic prostatectomies.
The Survivorship Clinic for prostate cancer patients was originally tailored to address urinary incontinence and sexual dysfunction or erectile dysfunction, with around 50% of men experiencing erectile dysfunction after prostatectomy and 15-20% with urinary issues after the surgery. But joining forces with Liz Winkler, MSN, APN-BC, a nurse practitioner with the REACH for Cancer Survivorship Clinic, gave it a much more holistic approach.
“I have worked with cancer patients for 30 years,” Winkler said. “In that time, I have seen cancer take so much from the patients and the families it affects. Cancer Survivorship is about taking it back.”
The first clinic visit with Winkler is a full hour in order to gain a clear understanding of all of the patient’s needs and concerns. Winkler conducts a review of symptoms after prostatectomy: pain, constipation, infectious symptoms, fatigue, urine control, erectile dysfunction. She then discusses the pathology report and significance of non-detectable PSA and continued monitoring of PSA.
“I try to bridge the gap between primary care and oncology. Many of them don’t have primary care,” she said. “I also talk about cardiovascular wellness because cardiovascular disease is one of the highest causes of noncancer deaths in cancer survivors.”
Winkler has made referrals for everything from psychiatric counseling for depression and anxiety, tobacco treatment, alcohol treatment, lung cancer screening, colonoscopy, medical weight loss, hereditary cancer clinic, Dayani Center for lymphedema therapy, pelvic floor therapy and cardio-oncology.
“We also discuss dietary guidelines (Mediterranean diet), exercise guidelines, tobacco use, alcohol consumption, guidelines for other cancer screenings and stress reduction,” Winkler added.
Sullivant said the clinic has primarily helped him manage expectations and hang on to hope that things would get better.
“It was like a human Google; they had the answers. I can’t imagine what the experience would have been like without them,” he said.
“I truly believe that part of the healing process is the mind. It is the mental aspect of it. It would have been very easy to give up on myself without people like that who were in my corner and encouraging me and giving me the resources to keep pushing forward. Dr. Penson, Dr. Johnsen, they cured me medically. Liz and nurse practitioner Michael Radyko made me whole again. They helped me get back to being myself.”
Johnsen said the emphasis of the survivorship clinic is “living with, through and beyond cancer.
“The benefit of the clinic is a holistic approach to the survivorship care that takes into account things that we as urologists don’t usually consider in our everyday patient encounters,” Johnsen said.
“Liz provides a dedication to our patients that I think we weren’t providing before we started this clinic three years ago. We are finding that patients feel their concerns are being addressed, and there is more investment in the care they are getting after treatment.”