It started with blood in David Pulver’s urine. By the time the process had ended—if a cancer diagnosis ever quite ends—Pulver had not only survived bladder cancer, but had helped create a way for thousands of bladder-cancer patients to better navigate their treatment.

Pulver, a trustee from the Class of 1963, has been cancer free for 10 years, and he’s punctuated his cancer-free decade with publication of Bladder Cancer: A Patient-Friendly Guide to Understanding Your Diagnosis and Treatment Options. The book—written with bladder-cancer expert Dr. Mark Schoenberg and Pulver’s sister Fran Pulver, a writer—aims to provide a road map through what can be a bewildering and frightening experience.

“When you first learn you have bladder cancer you feel frightened, vulnerable, and very much in need of help,” Pulver wrote. “Most people go to their computer and Google the words bladder cancer and up pops more information than they can imagine. They start clicking away and get even more frightened, confused, and depressed. They wonder how they are going to make sense of all the information. They try to understand how this avalanche of information applies to their own situation. I fully understand the feelings…”

Bladder Cancer: A Patient-Friendly Guide to Understanding Your Diagnosis and Treatment Options

Speaking to Pulver today, it’s hard to imagine him frightened, confused, or depressed. But that’s where he was in 2007 when he received his initial diagnosis. He conferred with expert physicians, recording his conversation with Schoenberg at Johns Hopkins Hospital so he could listen to and digest it later.

Schoenberg, an international expert on bladder cancer, told Pulver he’d written a book on the subject and was in the process of revising it. Pulver offered to help fund the project and look at drafts from a patient’s perspective. He soon was heavily involved, recruiting his sister—also a cancer survivor—to assist with writing.

“This book project has been a labor of love,” Pulver said, noting that all profits from the book will go to bladder-cancer research.

His own research was extensive and thorough—no surprise to anyone who knows him from his business career. Among other ventures, Pulver founded a successful national children’s clothing store chain and now runs a private investment firm. But in past years he has been immersed in the medical world and has come away with knowledge and experiences he thinks will be helpful to other bladder-cancer patients and their families.

Schoenberg, with years of experience with this particular cancer, said the book filled an important need. “The book speaks to a lot of different types of people, a lot of different levels of education, a lot of different levels of desire for specifics,” he said. “You can get a fairly cursory understanding by quickly leafing through and looking at pictures, or you can get a lot of information about a lot of specific topics.

“David imbued the process of creating this book with a determination to make it the best product we could make in a way that I could not have done by myself. He really raised the bar that we had to jump over by a couple of feet.”

“If you’re a patient, you always think about getting a second opinion from a different doctor,” Pulver said. “Ever think about a second opinion for the pathology report?”—David Pulver ’63

The book offers expert medical information from Schoenberg, which is organized and presented in a clear, patient-friendly way. Keeping in mind the bewildered patient, the book prepares others for what is coming and encourages them to be proactive, advocating for themselves throughout the process.

One chapter explains the urinary system from bladder to kidneys and beyond. Other chapters examine the diagnosis itself and help patients understand what that diagnosis means. Is the cancer an aggressive type? At what stage is the cancer? Has it spread? What are the treatment options? Is there a cure?

“If you’re a patient, you always think about getting a second opinion from a different doctor,” Pulver said. “Ever think about a second opinion for the pathology report?” He did, and then got three more, all four from renowned experts at top medical centers. There was no consensus, he said.

The book doesn’t shy away from the reality of the disease, which Pulver calls “the elephant in the room.” What are options after bladder removal, should treatment require that? What is the incidence of incontinence? What questions should patients ask? What information should they have before conversations with physicians?

Now Pulver, who 10 years ago hadn’t given bladder cancer a second thought, is sought after for his counsel. Even before the book was published, hospitals were providing his name to patients as someone who could be helpful. Word of mouth has him getting calls at home from friends of friends. On some occasions, he has had to tell a patient that his prognosis was very serious, that the report meant that the cancer had advanced to a very dangerous stage. Some patients have become friends, after they have survived the disease.

“There are 79,000 people a year who get diagnosed with bladder cancer, and 14,000 or 15,000 of them die,” Pulver said. Unlike some cancers, bladder cancer can in many cases be overcome.

“Seventy-five percent of the patients have bladder cancer that is not life threatening when treated and monitored appropriately,” he said. “Unfortunately, many don’t get help or the right kind of help. I feel that I can really help these people. A lot of times, with the proper medical care, they can lead a long life.”

More information is at bladdercancerbook.org. Pulver can be reached at davidpulver@msn.com.