Burt’s Story: A Urologic Oncologist Becomes a Bladder Cancer Patient

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Summary

Burt Needles had been practicing urologic oncology for 30 years when he was diagnosed with a rare, aggressive form of bladder cancer. Realizing he needed treatment by doctors who had experience with this disease, he turned to MSK.

Burt Needles was not worried when the first subtle sign of bladder cancer appeared in early 2013. As a cancer doctor with decades of experience in urologic oncology, he was quite familiar with early symptoms of the disease, and the most common one — blood in the urine — had not appeared. So his need to urinate more than usual did not seem cause for concern.

After this symptom continued for several months, he underwent a biopsy. He was startled to learn that he had a rare, aggressive form of bladder cancer called plasmacytoid variant carcinoma. This disease affects about 300 people in the United States per year. Burt, 64 at the time, couldn’t recall seeing a single case in his more than 30 years of practice.

Though he hadn’t treated anyone with this cancer, Burt was well aware of its severity. This type of disease spreads early, will often recur quickly after surgery, and can be resistant to chemotherapy. “I knew it was a very serious diagnosis and that I needed to be seen at an institution that was familiar with this disease,” he recalls.

Burt has a powerful personal connection to MSK: He trained here as a fellow in urologic oncology from 1979 to 1981. “From my own education, I knew about the level of excellence at MSK, as well as their experience in treating even the rarest cancers,” he says.

In addition, when he reviewed the medical literature about plasmacytoid variant carcinoma, Burt found MSK urologists at the forefront in developing the most-effective treatments. “The names that kept coming up in my research were [MSK urologic surgeon] Bernard Bochner and [MSK medical oncologist] Dean Bajorin,” he says.

A Homecoming of Sorts

In May 2013, Burt came to New York City for an appointment with Dr. Bochner. “It was ironic to be back there in the role of a patient,” he says. “It was like a homecoming for me. I came into the Kimmel Center, and there on the wall is a timeline of events in urology — and there’s a photo of Alan Yagoda, whom I trained under.”

Immediately, Dr. Bochner’s manner put Burt at ease and further convinced him he had made the right decision.

“I was captivated by him,” Burt says. “He’s a very take-charge type of person. He actually ordered an MRI on that same day before I flew back home.”

I knew about the level of excellence at MSK, as well as their experience in treating even the rarest cancers.
Burt Needles bladder cancer patient

Dr. Bochner acknowledges the challenge of treating unusual cancers like Burt’s. Doctors have less of a sense of how therapies may work in such situations. Nonetheless, “MSK receives a very large number of referrals, so we’ve treated dozens of these patients,” he says. “This gives us a good picture of the cancer’s clinical behavior and provides a basis for a treatment strategy.”

Even though Burt’s scans showed no obvious spread of the cancer outside of the bladder, Dr. Bochner was still concerned because this type of the disease has a high likelihood of invading surrounding tissues. “A cancer presenting at such an advanced stage makes it difficult to treat with surgery alone,” Dr. Bochner says. “He needed to have a major response to chemotherapy first in order for us to be able to operate effectively.”

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An Aggressive Approach

Burt returned for a follow-up examination with Dr. Bochner and a consultation with Dr. Bajorin. Dr. Bajorin recommended that Burt receive a three-drug regimen of chemotherapy for four months before undergoing surgery.

“No standard therapy had shown a benefit for this disease,” Dr. Bajorin says. “We thought this chemotherapy combination might be effective for Burt based on a literature review of case studies around the world and our knowledge of how patients with this cancer responded to the individual drugs.”

Some patients might have balked at this aggressive approach, but Burt didn’t. Dr. Bajorin helped coordinate treatment for him back in St. Louis over the summer and early fall of 2013.

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A One-of-a-Kind Patient

Both Drs. Bochner and Bajorin say it was a unique challenge to treat a doctor who knew so much about his own disease. “He knew exactly what he was facing, which added to his anxiety sometimes,” Dr. Bochner says.

“This was not an easy situation for them, given my medical expertise,” Burt agrees. “But they both treated me with great respect and handled it masterfully.”

The MSK doctors enjoyed talking with Burt on an academic level. “However, we had to actively separate the intellectual and scientific issues from the human aspect of delivering care,” Dr. Bajorin says.

“Meeting Burt and his wife, Ellen, and realizing what wonderful people they are added to our immediate emotional connection,” Dr. Bochner adds.

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A Complete Success

After the first few cycles of chemotherapy, Burt’s symptoms vanished. “I knew it was taking effect,” he says. “Psychologically, it was a big boost.”

In October 2013, Burt came to MSK for surgery. Dr. Bochner performed a radical cystectomy, a procedure in which the entire bladder is removed. He also constructed a neobladder using tissue from Burt’s small intestine so that he would not need to use an external urine collection pouch.

“That was important to me, to not have to wear an external bag,” Burt says. “I’ve always been active and wanted to continue exercising several times per week, and it’s much easier to do without one. There’s nobody better or more experienced at constructing a neobladder than Dr. Bochner.”

On a Saturday morning soon after the surgery, Dr. Bochner called Burt with some good news. No cancer was found in the numerous samples taken from his bladder and the surrounding tissues. The chemotherapy had wiped out the disease, and the surgery was a complete success.

“That’s a tribute to Dr. Bajorin’s expertise, and the surgical outcome is a tribute to Dr. Bochner,” Burt says. “You can see in my case how well the MSK team works together.”

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Resuming an Active Life

Three and a half years later, Burt feels completely back to normal. Although he is now largely retired — emeritus from the medical staffs at Washington University and Mercy Hospital in St. Louis — he continues to be active. “I think I’m physically in better shape now than before I had cancer,” he says. He comes to MSK twice a year for scans to make sure the cancer hasn’t returned.

Burt’s case has also contributed to scientific knowledge about plasmacytoid variant carcinoma, as Drs. Bochner and Bajorin and their MSK colleagues continue to research this disease. In 2016, they published findings on the genetics of this cancer type and identified a gene called CDH1 that plays a central role in triggering the runaway invasion of tumor cells. Burt’s tumor was one of those analyzed in the study.

Burt wants others who are diagnosed with bladder cancer to be mindful that it’s now a very treatable disease. An array of therapies have emerged recently.

“I think the most important thing for a patient is to be seen at a center that specializes in this cancer,” he says. “There has been an explosion of complex information, with genomic studies, treatment refinements, and surgical options. It all needs to be incorporated by an expert team. It takes a place like MSK to make it work in the best way possible.”

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Comments

I was disgnosed with Stage1 cancer after having a Transurethral bladder resectionto remove 6cm tumor Then doctor ordered a CAT thereafter and it was determined that tumor invaded the bladder muscle wall making this a stage2B It is recommended to have radical Neobladder reconstruction thus removing bladder healthy prostate and lymph nodes This does not sound consistent treatment for an early detection Unless there is some other reason for this radical procedure Thanks for your kind attention Barton Bloom

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