A young woman is having pain in her stomach and holding it with both hands

Unusual Bladder Sarcoma Tests Patient, but Care Team Finds a Way

When Samantha Marshall of New Orleans learned that she faced removal of her bladder for an undetermined condition, she traveled to City of Hope for a second opinion. There it was revealed that her tumor was not what her doctors originally suspected

Samantha Marshall is a high-energy, take-charge individual who knows what she wants. She’ll drop names like Snoop Dogg, Tim McGraw and plenty of other superstars — she knows them all, having worked for years as an audio engineer, touring with world-class performers and making sure they sound great during live shows in front of thousands of fans.

Originally from Vancouver, British Columbia, in Canada, Marshall, 58, settled in New Orleans with her husband Joe, a retired police officer who found his second act working as a tree care technician at the city’s Audubon Zoo. Life was good.

A Bladder Cancer Diagnosis

Sam Marshall and husband Joe
Samantha Marshall and her husband, Joe.

At least it was until early 2022 when, for no apparent reason, Marshall suddenly had trouble maintaining her full-steam-ahead pace. Fatigue set in, persisting for six months. All the early tests came back negative, but in June of that year Marshall experienced some blood in her urine, sending her to her OB-GYN. The doctor immediately referred her to an oncologist, who discovered a mass, almost certainly cancerous, in Marshall’s bladder.

“We had no clue where this came from,” recalled Marshall, adding that no one in her family had ever been diagnosed with anything like it.

Her New Orleans doctors could not identify the nature of the tumor. Was it bladder cancer? Something else? Nevertheless, they proposed a one-size-fits-all treatment plan: surgical removal of the bladder, which would require Marshall to live with an external bag on her abdomen to collect urine.

“Several things came to mind,” recalled Marshall. “Something sloshing around against my body in the heat, the likelihood of odor, and how it would impact me on the job and a daily activity level. 

“This was a big nope for me.”

Marshall began calling around in search of a better option. Her insurance company recommended City of Hope®, a place she’d never heard of. Now, of course, she’s quick to say, “City of Hope is the best thing that happened to me.”

When urologic surgeon and bladder cancer specialist Kevin G. Chan, M.D., heard about Marshall, he wanted to see her right away. In fact, Marshall says, Dr. Chan’s scheduler kept calling back, moving up the appointment again and again, until she and her husband had just three days to close shop in New Orleans and head to Southern California.

Marshall’s mother-in-law quickly came down to look after the house and the couple’s two cats. “I thought we’d be away just a few days,” Marshall recalled. “We were gone eight months!”

One meeting with Dr. Chan and Marshall knew she was in the right place, with the right doctor.

“He’s amazing,” she said. “He’s brilliant, confident, kind, incredibly positive, and he answered all my questions.” Most important, Dr. Chan, who is head of reconstructive urology, told Marshall she wouldn’t need an external bag.

“She’s a great patient,” said Dr. Chan. “Very detail-oriented, on top of things, in charge of her own care.”

Indiana Pouch for Muscle-Invasive Sarcoma

Marshall’s cancer — which turned out to be a muscle-invasive sarcoma rather than conventional bladder cancer — had not spread, making surgery her best option for survival. Instead of a bag, however, Dr. Chan outlined two better options: Replacing the cancerous bladder with a so-called “neobladder,” an internal reservoir made from small intestine, allowing her to urinate through her urethra again. Or an “Indiana pouch,” an internal reservoir made out of a segment of small and large intestine with a small “belly button”-type opening that one empties by inserting a catheter every four to six hours.  The opening is simply covered with an adhesive bandage.  Both options would allow Marshall to avoid an external bag and allow her to continue all the physical activities she enjoys. 

Although at first the neobladder sounded like the closest thing to restoring normal function, Dr. Chan pointed out potential problems, especially with female patients. In a moderate percentage of cases, the neobladder leaks, an embarrassing incontinence problem that is very difficult to fix. And almost 50% of female patients develop the opposite problem: They cannot empty their neobladder and need to catheterize their urethra every four to six hours to urinate. Such problems by and large do not develop with the Indiana pouch. Moreover, the stoma/catheter process, once learned, is easily managed and allows patients to resume normal activity.

Doctor Kevin Chan
Kevin G. Chan, M.D.

Marshall opted for the pouch, and on Aug. 22 she had the surgery, an eight-hour procedure performed by Dr. Chan and Clayton S. Lau, M.D., chief of the Division of Urology and Urologic Oncology and the Pauline & Martin Collins Family Chair in Urology and Urologic Oncology. All went well, but the story doesn’t end there.

“I’m a slow healer,” said Marshall, as she proceeded to detail a litany of postsurgery challenges, including a variety of pain issues, plus a persistent case of lymphedema, a swelling condition caused by the removal of dozens of lymph nodes during surgery. Marshall and her husband ended up renting an apartment nearby for what turned out to be an extended stay in Southern California as she received ongoing treatment.

And this is where Marshall proceeds to wax rhapsodic about the care she received at City of Hope, especially from the supportive care and nursing staff. She heaps praise on nurses Monica Martinez and Leslie Heald, who assisted her immediately following surgery. And she points to one particular example of above-and-beyond accommodation during her eight days there following surgery:

“Several of the nurses made sure my husband was comfortable,” she said. “He slept in the chair next to my bed for the full eight days I was in the hospital.

“That means a lot when it comes down to it.”

Learning to live with an Indiana pouch can be challenging at first, for the patient and her family. The staff made it easier.

Working With a Stoma Educator

“Kathy Manuel, the stoma educator for Dr. Chan, met with me before the surgery to teach me how it worked, how to flush it and generally what to expect,” said Marshall. “Since then, she’s answered any questions Joe or I have had.” In fact, one of the nurses “taught my husband how to do everything. While I was recovering, he was able to do it when I was sleeping.”

To deal with her lymphedema, Marshall received invaluable help from occupational therapist Francis Maina Waithaka. He showed her how to handle compression wear and how to perform manual lymphatic drainage, a light, skin-stretching massage that helps promote the movement of lymphatic fluid out of the swollen limb. “The occupational therapy department at City of Hope is exceptional,” she said.

And then there was Sari. “One of the most amazing people,” Marshall said.

Marshall was in considerable pain, especially in her right shoulder where some nerve damage had occurred. Supportive care specialist Sari Williams, R.N., FNP-C, took over, handling every aspect of Marshall’s pain management, choosing the appropriate pain medications, educating Marshall about them and much more.

“To say she's been a positive force for me at City of Hope is an understatement,” said Marshall. “She’s often guided me in the right direction for things that are outside her department. She defines multidisciplinary care.”

All part of the job, says Williams.

“I like to meet patients where they are, to help optimize their care,” said Williams. She’s a nurse practitioner with over six years in palliative care, and more than a decade in intensive care units before that. She knows all about pain, how to treat it and, above all, how to treat patients with respect.

“This is close to my heart,” she said. “Members of my family have had cancer. We are profoundly affected by our feelings of helplessness.” The best part of her job? “Knowing I made someone feel better.”

Though she found Marshall “withdrawn and a little guarded” at their first meeting, Williams says the two quickly made a strong connection, thanks in part to Marshall’s kindness and sense of humor. Williams lauds Marshall’s bravery for undergoing the Indiana pouch procedure — still a relative rarity — and for tenaciously battling back against her pain and lymphedema challenges.  “I’m nuts about her!”

You could say the same about Marshall and her feelings about City of Hope. Two years after her surgery, she’s very happy she chose the Indiana pouch and wishes more patients around the country knew that such options exist for them. She has adjusted nicely to her new way of managing her urine, and she does not let it slow her down.  Her career as an audio manager is on hold — lifting the heavy equipment is a bit too difficult — so she is pivoting to something new: freelance writing.

Best of all, every subsequent scan has shown no traces of cancer. For that Marshall is profoundly grateful. 

“Lucky for me, we came to City of Hope,” she said. 

The Department of Supportive Care Medicine at City of Hope was the first in the United States to fully integrate across supportive care specialties and into the patient’s clinical care and is one of the largest programs of its kind today. The program provides cancer patients with comprehensive physical, psychological, social and practical support services, including care navigation; survivorship programs; specialists in cancer and aging; child life specialists; psychological and spiritual counseling; pain management; integrative medicine, such as yoga, massage and meditation; and more — all with a focus on maximizing patient and family strengths, quality of life and the ability to best engage in their treatment journey and beyond. Thanks to a gift from The Sheri and Les Biller Family Foundation, City of Hope is working to expand this offering across its cancer care system and to advocate for establishing supportive care as a standard best practice for cancer care in the United States.