Was my bladder cancer linked to BK virus and kidney disease?
Receiving a kidney transplant can transform a patient’s life. However, it’s not a cure and does not necessarily come without complications.
That was certainly the case for Tim Tavender, a 51-year-old marketing professional and amateur stand-up comedian from Southampton. Shortly after a kidney transplant in 2015, Tim’s health deteriorated due to BK virus and, subsequently, bladder cancer.
BK virus is a common childhood infection. It remains dormant in the kidney and lining of the ureters and bladder forever, becoming active again if the immune system is weakened. Needing immunosuppressants to prevent organ rejection puts transplant patients, such as Tim, at greater risk.
Father of two, Tim, says: “BK virus made me feel sub-par. It was like constantly having the flu. Reducing my immunosuppressants was the only way to fight it. However, that left me vulnerable to transplant rejection. I was walking a medical tightrope.
“It took four years for my immune system to fight off BK virus. Thankfully my kidney continued to function. However, in 2021, after noticing problems with my urine, I was diagnosed with bladder cancer.”
Kidney Research UK funded researcher, Dr Simon Baker, from the University of York, has led a study which has found a link between how our tissues respond to BK virus infections and bladder cancer. This could explain Tim’s own experiences. Dr Baker continues to seek a better understanding of the risk BK virus poses and is currently working on improving screening processes and new treatment approaches for patients, to catch infections early and prevent diseases developing.
An early diagnosis was vital for Tim, giving doctors the opportunity to remove his bladder, and therefore the cancer, early in 2022. Tim says: “Recurring fluey symptoms and passing blood prompted me to visit the doctors. Subsequent tests led to my diagnosis. It was very scary when I first saw blood in my urine. It wasn’t just a little bit, it was claret. I tried to brush it off, but it kept happening.”
It’s really important to go to your doctor if you see any blood or redness in your urine, acting fast could save your life.
BK virus and bladder cancer
Tim’s transplant in 2015 was a success, and he says: “People would tell me how much better I looked. However, a month later I became very pale and had dark rings around my eyes. My kidney function dropped, and doctors discovered I had BK virus.
“I felt low in energy and constantly unwell, but, running my own marketing business, I don’t get sick pay and had to carry on providing for my family. My immunosuppressants were lowered so my immune system could combat the virus, but that put my kidney transplant at risk of rejection. It was four years until I was free from BK virus and my immunosuppressants were increased again.”
Sadly, that was not the end of Tim’s health complications, and, in 2021, he noticed he was having difficulty urinating.
Tim says: “My urine wasn’t flowing as normal, and I wondered if I had an infection. I saw my renal consultant and had an ultrasound and a cystourethroscopy – a camera inserted up the urethra and into the bladder. This identified a lesion on my bladder and I had a biopsy. When the results came back, I was told I had stage one bladder cancer and needed my bladder removing.
“The surgery took 13 and a half hours, removing my bladder, my native kidneys and my prostate, before constructing a stoma bag from my bowels. That has been difficult. I hated it at first and felt quite down. However, I’m getting on with life.”
The major surgery was worth it, Tim feels. He says: “I’m grateful I don’t have cancer anymore and my body is working well. I’ve seen other men left with life-changing consequences of similar surgeries, such as permanent erectile dysfunction.
“It’s all about perspective. I have a friend who has terminal cancer, so I feel lucky to have received a transplant and to have found my bladder cancer at stage one. I’ve also been affected by urine infections, sepsis and skin cancer, but everything has been treatable.”
Ongoing research
Dr Simon Baker is studying DNA from bladder cancers, like Tim’s, to understand more about the risk that BK virus poses in these developing. In addition, he co-chaired the development of the first clinical guideline for the management of BK virus with the British Transplantation Society, with the hope of establishing a national screening process to identify infections early.
Tim says: “I’ve seen there is a link between BK virus and bladder cancer in renal transplant patients who are immunosuppressed. Early screening of people at-risk could be lifesaving. Had I not gone to the doctor when I did, there may not have been an opportunity to treat my bladder cancer before it spread. If that was the case, I might not be here today.
“It would be nice to think that BK virus could be eliminated, because it does still impact me. A year ago, it returned, and I’ve been told it will cause the slow decline of my kidney. I’m super grateful to the doctors and researchers who have cared for me. If I can help others be more aware of their health, that’s all the motivation I need to share my story.
“I’m concerned about passing kidney disease to my sons. If that happens, I’d be devastated. What keeps me hopeful is that there have been leaps and bounds forward in research. I want to keep pushing us closer to answers by supporting researchers like Dr Baker.
“I’ve had my transplant for ten years, and I know this kidney won’t last forever. There’s no indication that it’s giving up though and I’m under great care, so I hope that it keeps going for a long time yet. I want to see my sons grow older, watch them get married, graduate from school and have their own kids. Nobody knows what the future holds, so I try to stay present and engaged in life. I try to stay healthy and not to worry about what I can’t control.”
Is bladder cancer caused by BK virus?
Research from Dr Simon Baker’s group at the University of York, suggests that BK virus can trigger changes in DNA that drive bladder cancer development, which kidney transplant recipients are at much greater risk of.
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