On June 26, 2018, Rep. David Trone won the Democratic primary to represent Maryland’s 6th District in Congress. The same day, he was diagnosed with ureteral cancer after a routine physical detected blood in his urine.
During the next few months, Trone underwent a regimen of chemotherapy and a minimally invasive surgery from a team at Johns Hopkins Medicine’s Brady Urological Institute and Greenberg Bladder Cancer Institute, all while continuing his congressional bid.
“It was tough timing. But I came back out and won the general election and continue to serve in Congress now,” Trone says. “I’ve been four years cancer-free. I go to Hopkins for regular checkups and CT scans, and the continuity of care is very important.”
Last year, Trone committed to helping others with similar cancers with a $975,000 gift from the David and June Trone Family Foundation. The gift will fund the first three years of the Johns Hopkins Upper Tract Urothelial Cancer Multidisciplinary Clinic and the associated research program.
Though bladder urothelial cancer is a common malignancy — the fifth most prevalent cancer in men — upper tract urothelial cancer (UTUC) is relatively uncommon, making up just 5-7% of patients with urothelial cancers. It presents in the renal pelvis or ureter, structures that connect the kidney into the bladder.
“It’s a rare location for a common cancer to occur, and upper tract urothelial cancers tend to have a worse prognosis than urothelial bladder cancers for various reasons, potentially based on biology, potentially based on challenges with accurate staging as these tumors are often difficult to biopsy based on their location,” says Jean Hoffman-Censits, MD, co-director of the Upper Tract Urothelial Cancer Multidisciplinary Clinic. “After seeing so many patients, we recognized a significant unmet need to have a cohesive space devoted to this patient population.”
Like Trone, most UTUC patients initially experience blood in the urine, or hematuria. Other symptoms include flank pain, though that’s relatively uncommon, says Nirmish Singla, MD, a urologic oncologist who provides Trone’s follow-up care. Evaluation for the cancer includes a combination of a CT scan or MRI, and a cystoscopy and ureteroscopy — procedures that allow doctors to examine the bladder and kidney, respectively, via a hollow tube with a lens inserted into the urethra — and biopsy.
Singla says doctors take both tumor and patient-related factors into consideration when developing a UTUC treatment plan. Treatment ranges from local endoscopic approaches involving a scope and laser, to surgical treatment or systemic therapies combining chemotherapy with surgery, as well as clinical trials.
“The intent of the Upper Tract Urothelial Cancer Multidisciplinary Clinic is to try to centralize the care of patients who do have a diagnosis in UTUC and ensure that they get access to both medical oncologists and urologists,” Singla explains.
Part of the funds from the Trone Family Foundation gift will go towards a multidisciplinary navigator, who will pull together the resources in the Hopkins system to facilitate coordinated care and continue to move patients through the health system and their treatment plan.
“Having a new cancer diagnosis with a rare tumor, you’re seeking expert care,” Hoffman-Censits says. “It is so overwhelming to even think about. To have a point person who can navigate a new patient into our center through new visit and initial work up and decision making is going to be invaluable.”
The navigator will aid in research by vetting patient candidacy for clinical trials and consenting them for tissue banking. They will also prospectively collect patient clinical data, which will be uploaded to a powerful precision medicine analytics platform.
In addition to funding a navigator, the gift will also allow for prospective gene sequencing on all the clinic’s patients, which allows researchers the opportunity to find new subsets of disease and correlate them with clinical outcomes.
“This solves a problem that a lot of us involved in cancer genomics have been aware of for a while — we can generate super high-quality sequencing data, but if the sequencing data aren’t paired with super high-quality clinical data, the usefulness is dramatically diminished,” says David McConkey, director of the Johns Hopkins Greenberg Bladder Cancer Institute. “This resource will be the most efficient way to rapidly teach us how to treat our patients better.”
Philanthropy enables investigators to build the tools they need to perform their research successfully, McConkey adds. Pilot projects using the data UTUC researchers are collecting will help secure additional funding from government agencies, like the National Institutes of Health (NIH).
For Trone, investing in medical research, like that being done at the Upper Tract Urothelial Cancer Multidisciplinary Clinic, is an investment in future generations.
“The more we can fund medical research, the better America and the whole world’s going to be,” he says. “When members of Congress talk to the great doctors in NIH, similar to the doctors at Hopkins, we realize that the return on medical research is roughly eight to one. When we get that kind of payback, it’s all about our children.”
Topics: Friends of Johns Hopkins Medicine, Johns Hopkins Medicine, Promote and Protect Health