Cancer treatment has improved significantly over the past several decades, meaning that more people are living longer after undergoing surgical and medical interventions. This has led to the emergence of an area of cancer care called survivorship, which takes a holistic view of the patient’s well-being and sometimes involves therapies that haven’t always been part of the oncology playbook.
In the case of bladder cancer, survivorship and improving quality of life post-surgery sometimes means physical therapy that focuses on improving the function of the pelvic floor.
The pelvic floor refers to “the muscles involved in bowel and bladder health and function,” says Dr. Matthew Mossanen, a surgical oncologist with the Dana-Farber Cancer Institute in Boston and assistant professor of surgery at Harvard Medical School.
Ting-Ting Kuo, a board-certified women’s health clinical specialist and director of rehabilitation at Memorial Sloan Kettering Cancer Center in New York City, describes the region as a “group of muscles, ligaments, and connective tissue that form the bowl-like structure at the base of the pelvis.”
Having appropriate muscle tone and control in this area assists with core stability, bowel function, and urinary control, and provides support for other internal organs.
But treatment for bladder cancer can be invasive and disrupt these structures and functions. Though data show that chemotherapy followed by surgery typically offers the best chances of long-term survival, that surgery can disrupt how this area of the body functions.
Some bladder cancer patients undergo a cystectomy, a major surgical procedure that “involves removal of the bladder, and in men it involves removal of the prostate,” Mossanen says. “For women it involves removal of the uterus, the ovaries, and fallopian tubes, and part of the vagina. It’s a huge operation, and it’s done when bladder cancer has become life-threatening.”
Fortunately, “the majority of patients who have bladder cancer do not have to go through a cystectomy,” says Dr. Emily Slopnick, a urologist at the Cleveland Clinic in Ohio. This procedure is reserved for those who have advanced-stage bladder cancer and who are young and healthy enough to endure such a complex surgery.
After it’s removed, the urinary system needs to be rebuilt, since the urine that the kidneys will still produce needs to go somewhere. This largely takes one of two forms, Mossanen says.
The first option is a urostomy, where the surgeon creates an opening in the abdomen through which urine can drain into an external bag that can then be emptied when full. The second primary option is a neobladder, which means creating a new bladder inside the body. “A neobladder is literally a substitute bladder that’s formed from a section of intestine,” Mossanen says.
Creation of a neobladder “can give patients a very good quality of life by helping some of the younger patients avoid the bag,” Mossanen says.
However, all this disruption to the urinary system can create problems, Slopnick says. “Any time there’s any sort of trauma per se in the pelvis, the pelvic floor can react to that. People tend to get tension or spasms, almost like a cramping of the pelvic floor muscles,” as the body tries to protect itself from the trauma. This can in turn affect continence, sexual function, and bowel function.
What’s more, especially after a neobladder reconstruction, some patients may develop a variety of unwelcome symptoms, including urinary incontinence, an inability to fully drain the bladder, and leakage of urine, particularly when laughing, coughing, or sneezing. But Mossanen says that referring patients with these issues to a pelvic floor physical therapist can help, because rehabbing those important structures may help bladder cancer survivors enjoy a higher quality of life.
When it’s used
While physical therapy is typically thought of as a post-surgical intervention aimed at restoring function that’s been disrupted by illness and surgery, in the case of bladder cancer, prehabilitation of the pelvic floor may also be advisable, Mossanen says.
“I really do believe strongly in prehab,” he says. At the Dana-Farber Cancer Institute, Mossanen has developed programs along these lines to help patients prepare for surgery. These efforts include classes on overall wellness, nutrition, and exercises patients can do to help build up the body before surgery.
The concept of prehab makes sense: if you’re stronger heading into surgery, you’ll likely be able to recover faster. Though the idea hasn’t fully caught on in all places yet, Mossanen believes that prehab will likely become a more common feature of bladder cancer treatment in the future.
Prehab can be especially useful as patients prepare for a cystectomy and the long—about three months or so—post-surgical recovery period. “Many patients will have fatigue after surgery and have slow recovery or complications,” Mossanen says, in some cases due to the chemotherapy that often precedes a cystectomy. “Because of these factors, some patients cannot participate in rehabilitation, so there’s a wonderful justification to do prehab so that patients can recover with more resilience.”
Whether you’ll be engaging in pelvic-floor prehab or rehab related to bladder cancer, you’ll be working with a pelvic floor specialist—usually either a pelvic floor physical therapist or a rehabilitative medicine physician, also called a physiatrist. These specialists have the training and knowledge to help you regain function and reduce complications.
When and how that provider gets involved “depends on the symptoms being experienced” as well as the type of care being provided, Kuo says. “The multidisciplinary team for the bladder cancer individual will identify the right time to refer for pelvic floor therapy.”
Read More: The Latest Breakthroughs That Could Help Bladder Cancer Patients
What to expect from physical therapy after bladder cancer
If you’ll be undergoing physical therapy after bladder cancer, expect a very thorough physical exam, Slopnick says. “They’ll assess where you’re strong, where you’re weak.”
This may involve the use of a probe in the vagina or rectum to create visual feedback on a screen that maps how the muscles are moving. The therapist will also check your strength and coordination in the rest of the core, including the hips, spine, back, and abdominal muscles.
Your medical history will be carefully considered in the development of your individualized care plan. “That includes a review of the past and current medical history, testing images, social history, lifestyle, and bowel and bladder habits,” Kuo says. For example, if your urgency to eliminate has increased after the surgery or you’re going to the bathroom more frequently, those changes may provide insight into what the pelvic floor specialist focuses on during therapy.
The therapist will take baseline measurements of pelvic floor function during this initial evaluation and can recheck those metrics over time to determine how well the therapy is helping and whether the care plan needs to be adjusted.
As for the therapy itself, Slopnick says it’s always best to work with a trained provider. “I would not recommend just reading about it online and trying to figure it out on your own, because you’ve been through a complex disease process and had some complex treatments. It really is important to get evaluated by somebody to find out if it’s just the pelvic floor and make sure there’s nothing more going on.”
It’s difficult to estimate exactly how long pelvic floor therapy will last, as it’s so dependent on the individual’s needs and physical status. But typically, Kuo says, “it’s usually one to two times a week to start.” She notes that patients may need to complete exercises at home, outside of therapy sessions, too. “What’s really important is the consistency of the individualized care.”
Potential therapy may include breathing exercises, strengthening or relaxation exercises, and manual massage to relieve tense muscles. In other words, there’s a lot more to it than just doing some Kegels. “And it’s not just about the muscles around the pelvic girdle. It’s your legs, your trunk, your abdomen, your core, your back. We look at muscle balance, and we ensure that there’s really good mobility across the board,” Kuo says. Even exercises to improve posture and the ergonomics of sitting or standing come into play during this therapy.
Benefits of pelvic floor rehabilitation for bladder cancer
As the therapy progresses, “we’re going to be looking at some objective measures of pelvic floor muscle strength and coordination,” Kuo says. This can include assessing soft-tissue pliability and mobility, decreases in scar tissue, and reduction in symptoms. “We take a look at whether [patients] decrease the number of incontinence pads they’re using, or have they increased the time between having to go to the bathroom.”
Mossanen adds that for some patients, these improved metrics might be -secondary to the psychological -benefit they get from working closely with a physical therapist to improve pelvic floor health. “I think there’s an emotional and cognitive benefit of having that support from another member of the team that can offer something that I can’t,” as a surgeon, he says.
Read More: How to Return to Normal After Having Your Bladder Surgically Removed
In addition to physical therapy, rehab after bladder cancer usually involves nutritional counseling. Especially for patients who have a neobladder fashioned from a section of intestines, bowel function is a concern. “That’s the big thing we’re watching for after surgery, is waiting for the bowel function to recover,” Slopnick says.
“The bowels slow down” as they recover from surgery, “and it takes a few days to a week for things to start moving through again,” she says. During that period, patients are typically advised to avoid eating too much fiber and are instructed to drink plenty of water to help the gut recover and do its work.
Kuo notes that drinking plenty of water is also particularly important for patients who’ve had a neobladder procedure; that new bladder pouch has been fashioned from a section of intestinal tissue that doesn’t have the same nerve endings or musculature that the urinary bladder did. The sense of urgency around needing to urinate can be quite different with the neobladder. “They’re not going to have the bladder muscle to let them know when they need to go, so they may need to set a time to go every few hours,” she says.
Gentle exercise, such as getting up and walking as soon as possible after surgery, can help keep the digestive tract moving and prevent potential complications such as blood clots.
There’s a lot to know when undergoing surgery for bladder cancer, and some of these topics might make you feel a little uncomfortable. You’re not alone if you find it awkward talking about bowel and bladder function, and what goes on in the bathroom, with anyone, let alone a room of doctors. But your care team is there to help. “If you’re experiencing any symptoms, have a conversation with your health care provider,” Kuo urges.
More Must-Read Stories From TIME