Is anyone familiar with the BK Virus?

BK virus is a common human polyomavirus that most people contract in childhood, often with no symptoms. It remains dormant in the body but can reactivate and cause serious problems, particularly in individuals with weakened immune systems, such as organ transplant recipients. When it reactivates, it can lead to BK virus nephropathy (BKN), a condition that damages a transplanted kidney. Thats what the virus is and you saying its good then you never had it as a child. No a doctor here for sure. Sorry for other stuff.

Typically cytology and TURBT pathology will determine disease status. Sometimes a genomic assay (Natera Altera, Tempus and such) is ordered.

I had the cystoscopy last week with intended biopsy but dr said he did t see any lesions or tumors to biopsy.

@jaxfl
Thanks for your reply. I've had a urogram and cystoscopy but no tumors or lesions yet seen.

That is very encouraging!

Hello @mnewland99 and I am so sorry you are dealing with all of this. I just wanted to warn you about my husband's experience with diagnosing bladder cancer. Locally he had a cystoscopy and CT Urogram and was pronounced no cancer despite a positive FISH test and cytology from urine showing highly aggressive urothelial cell carcinoma. It was because the tumor was in a little pouch off the bladder (diverticulum) that the urologist did not bother to look into when he did the cystoscopy, Thankfully he had an executive physical scheduled at Mayo Clinic shortly after this and the doctor there caught the cytology report, had the CT scan sent to Mayo where radiologists saw the tumor in the diverticulum and we progressed from there to treatment and surgery. We lost faith in the local doctors to have missed these findings. If your cytology says bladder cancer, ask for a referral for another opinion. Sometimes things are missed. Do you have a large cancer center or teaching hospital nearby?

@sepdvm
Thank you Sue for sharing that info. What kind of surgery did your husband have? Luckily you are close to Mayo (which one?). I live coastal in Southern California so my primary go to medical is on Newport Beach. City of Hope has a new facility in Irvine and they aren't a teaching hospital, but they do have some top notch cancer specialists there and so I'm trying to get a 2nd opinion ASAP. I wish the best for you and your husband!

@jaxfl
Yes, but I was told urothelial cancer so maybe they didn't post that test online. I'm planning on getting a 2nd opinion ASAP at a another facility that just deals with cancer.

@mnewland99 I was originally diagnosed in nj in 2023 at a community hospital . My California family asked who was the best in Southern California and was told Sia Daneshman at Keck /USC. I elected to stay on the east coast and went for a second opinion in NYC. I have to travel a bit but it’s worth it and have received phenomenal care at a major ny teaching hospital. My Drs here agree about Sia!

@141emp
Thank you for that information!
Back in 2022 USC drs were on loan at Hoag Hospital in Newport Beach and one young surgeon did my distal pancrectomy. I did have complications afterwards. I'll keep that in mind though I don't like to travel.