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Living well with advanced cancer

This content is sponsored by Johns Hopkins Medicine

Escaping the Cancer “Black Hole:” Living Well with Advanced Cancer and Free Diving in Bali

 

In December 2015, retired congressional staffer Tom Forhan was in his urological surgeon’s office when he learned that he not only had invasive bladder cancer, he also had metastatic prostate cancer.  Forhan had had kidney stones, and a few months earlier it had been discovered that they were attached to his bladder wall by a tumor that turned out to be stage 2 bladder cancer. During the work-up for curative bladder cancer surgery, the doctor found a metastatic tumor in Forhan’s spine that was causing him chronic pain that limited his daily yoga practice. The tumor had not come from the bladder cancer: Forhan also had stage 4 prostate cancer.

Needless to say, Forhan faced a complex set of challenges with the combination of metastatic prostate cancer and invasive bladder cancer, as well as a bone fracture caused by the prostate cancer tumor.  However, that combination isn’t as rare as it might seem. More than half of patients with invasive bladder cancer also have aggressive prostate cancer. The prognosis generally is not good. Calling it a “black hole,” surgeons often refuse to attempt curative surgery for the bladder cancer because the patient is likely to die soon from prostate cancer.

Tom had already suffered through the death of his wife from cancer.  Seven years earlier he had taken family leave to care for her in her last year suffering from breast cancer. So now, faced with his own dire prognosis, Tom Forhan decided that he had given up enough to cancer.

“That same day I made an appointment to see a team of oncologists at Johns Hopkins Medicine,” Forhan recalls.   He went to Sibley Hospital for an appointment with Dr. Armine Smith (urologist/surgeon), who then brought in Dr. Channing Paller (medical oncologist) and Dr. Curt Deville (radiation oncologist).

“They worked out a treatment plan to deal with both my cancers, and I walked out that very day with a prescription for an oral testosterone blocker to slow the growth of the prostate cancer and a plan for radiation to control the tumor on my spine,” Forhan said. “After all the delays at the other hospital, to see something happen immediately at Sibley made it very clear I had found my new team.”

“I had been told at the other hospital that I should have the ‘standard of care’ surgery that would have removed my bladder and left me with an external bag for urine collection,” Forhan recalls. Drs. Smith, Paller, and Deville developed a different plan, “one that would allow me to keep my bladder and enable me to go back to teaching yoga – a big part of what made life enjoyable.”   The innovative, three-part treatment plan combined a radical TURBT (transurethral resection of bladder tumor) with radiation and chemotherapy.  “So, I’ve still got the real bladder…and it serves me well,” Forhan says. “The shift away from bladder removal surgery was one of the most remarkable parts of my Hopkins story, especially since the surgeon was behind it. I learned it was a standard of care in Europe, but not as common here. As a patient, I realized I wasn’t getting cookie cutter care, but that the team was looking far and wide for solutions.”

Still looking ahead, Forhan also had his eye on another big step in his life – his dream to go free diving in Bali.

“After a year of essentially being house-bound during treatment, my friend Ashley reminded me that since I loved both the ocean and yoga, I should come to Bali where she taught free diving.  Ashley provided enough information about free diving to persuade my oncologists that it wouldn’t put me at unreasonable risk and off I went.”

Of course, having opted for keeping his bladder helped. “I’m guessing a bag for a bladder would not work with a wetsuit,” Forhan joked.

In a note to Dr. Paller last month, Forhan wrote that “cancer changed my life, not in terms of treatment or recovery, but because it hit me over the head with the fact that I needed to live every day, really live, as you well know. For me, not only was there life after cancer diagnosis, but in many ways, it was better. Cancer could be considered a gift.  Calling Uber now…off to Bali this afternoon. As ever, thanks for everything you have done. Tom”

The successful intervention in the case of Tom Forhan and others has prompted John Hopkins Medicine to develop Personalized Medicine Centers that focus on genetic and molecular profiling for various types of cancer. At Sibley Hospital, for example, there is now a Personalized Medicine Center of Excellence for prostate cancer and bladder cancer which profiles all tumors with genetic sequencing.

“For several years, we have known that genetics and genetic profiling play a role in how patients respond to certain therapies for prostate cancer, and there is more evidence that there are molecular markers for bladder cancer that predict a patient’s response to certain types of treatment as well,” explained Sibley’s Dr. Armine Smith.

One new therapy, approved just a few months ago, uses targeted immunotherapy to treat bladder cancer.  “It has helped several of my bladder cancer patients see their cancer go into remission,” noted Dr. Channing Paller.

Dr. Smith notes that having these cutting-edge treatments available is part of Sibley’s commitment to tailor therapy to the needs of each patient. The particular case of Tom Forhan would be an example.