Doctor helps patient.
Patient helps doctor help a whole lot of other people.
That sums up the story of Saketh Guntupalli, MD, and Marilyn Karinch, co-authors of the book Sex and Cancer: Intimacy, romance and love after diagnosis and treatment, available at bookstores everywhere on July 8. There is, of course, a whole lot more to it.
Guntupalli is a University of Colorado School of Medicine gynecologic oncologist who practices at UCHealth University of Colorado Hospital. Karinch, who lives in Estes Park, is the author of 26 books, including this latest.
They met in the medical world, long before they contributed to the literary one. Karinch was diagnosed with endometrial cancer in fall 2014. She had been referred to one of Guntupalli’s colleagues, she said, but, “For some reason I just thought – no – it’s got to be Saketh Guntupalli.”
“He’s intensely gifted and very kind, and he’s exactly the kind of cancer doctor you want when someone says, ‘Oh, by the way, we have to remove your female organs,’” Karinch said.
Her treatment, which indeed included a hysterectomy as well as chemotherapy and radiation, wrapped up in in early 2015, at which point she was cancer-free. She went on with her writing and other endeavors. He continued with his medical work.
Big win, big loss
In addition to seeing patients, his work included performing surgeries on complex gynecologic cancers, running a fellowship program, serving as vice-chair for quality and improvement, leading UCH’s highly regarded Placenta Accreta Response Team, and doing medical research.
His research was diverse, but often touched on surgical outcomes. A patient encounter led him down a different path. She had been treated for ovarian cancer and had come into see Guntupalli to confirm she was in the clear. She seemed distracted, sad, despondent. The exam showed neither disease nor other problems. Still, she started to cry. He asked her why she was so sad.
She told him that her husband hadn’t touched her in any emotional or physical way since the diagnosis and she felt like she had beaten cancer but lost her marriage.
That a woman who had done so well with a tough and ultimately successful cancer treatment regimen could be so despondent struck Guntupalli emotionally at first, and then intellectually, taking the form of a research question: “Do we really know what is the incidence of marital and sexual dysfunction in people that have cancer?” he asked.
With CU clinical researchers Dina Flink, PhD, and Janelle Sheeder, PhD, Guntupalli designed a survey. Via Guntupalli and fellow oncologists, it went to 350 women around the United States. Among other things, the team found that 15 percent of women had what Guntupalli described as “significant problems with sexual and marital dysfunction” after a gynecologic cancer diagnosis – and that fully 70 percent experienced sexual dysfunction, “which is a huge number.”
“So it was like, whoa, this is a really, really big problem,” Guntupalli said.
He decided there should be a book about it. Given the combination of her personal experience with cancer, her track record, and that she and Guntupalli had hit it off personally Karinch was the logical choice as co-author.
Guntupalli steered Karinch to several patients whose stories Karinch augmented with her own experience, Guntupalli’s research and expert interviews. Her case was early-stage and, relatively speaking, not a difficult one, she said.
“But by going through the surgery and the chemo and the radiation, I got to know all the phases of what people go through and all of the physical and self-esteem issues that are associated with the treatments,” she said. “So it gave me a very up-close and personal perspective on what the people who have even more serious issues deal with.”
The idea was not only to document the problems cancer patients often face with intimacy, but also to highlight ways to tackle them. The main message, Karinch said, was that “there’s a healing process on the intimacy front and the sex front, and if you want to, you can keep moving forward.”
The problems start with the physical changes to be overcome in the wake of surgery and radiation treatment. Then chemotherapy saps energy and cuts down on the production of the endorphins one needs to feel sexual, Guntupalli said. If that weren’t desexualizing enough, chemotherapy generally costs women their hair. It’s important that women and their partners understand that these things are the norm rather than the exception, and that they conspire to make them feel less sexual, he said. That understanding is a key to heading off the psychological challenges that come in the wake of cancer treatment’s collateral damage.
Through much of the book, Karinch and Guntupalli use the stories of cancer survivors as vehicles to highlight both potential pitfalls as well as things women have done to regain control of their sex lives after cancer. He wanted the book to not shy away from the problems, he said, but to emphasize solutions to the basic question: “What are the things that women and men can do to regain their sexual identity after a diagnosis from cancer?”
Those things can be as diverse as personal lubricant and long rides on the back of a Harley Davidson with one’s spouse – the latter which one patient found to be a satisfying alternative for both her and her partner, he said. But there are a few fundamentals. The most important of them, he said, is managing expectations about the nature and frequency of intimacy, both in the days and weeks after treatment and in what can be a new normal in terms of intimacy and sex drive.
“It’s really about exploring intimacy as a whole,” Guntupalli said. “It’s not all about intercourse.”
Guntupalli said he hopes the book sparks conversations at UCHealth and beyond. He said he would like to see psychotherapists or specialists in sexual function/dysfunction as part of care teams working with cancer patients. More broadly, he said, he would like Sex and Cancer to shed daylight on what he sees as the medical community’s tendency to be far less concerned about the long-term consequences of removing a woman’s ovaries than it seems to be about male castration.
“I think there’s a dichotomy in health care – we treat women’s sexuality so differently than that of men,” he said. “Viagra is completely covered by insurance and erectile dysfunction is a well-recognized medical problem, but when we try to get birth control pills for women, oftentimes they’re not covered.”
As for his collaboration with his former patient, Guntupalli said he couldn’t be happier with how it turned out.
“The idea was mine, but the soul is very much hers,” Guntupalli said.
Karinch felt the same way.
“I was just delighted,” she said. “He had already saved my life and he’s such a kind human being.”