Now what? Blood in urine

Did the MD do a cytology? Did the MD suggest a blue light TURBT? Was a CT/MRI/PET suggested? If the MD refuses to escalate investigation it is time to escalate or move clinics.

It could be benign inflammation but it could also be CIS. Blood and more frequent bathroom visits are usually indicative. And it can be missed in cystoscopy. That is where cytology comes in. It would state whether malignant cells are present. And typical protocol is to scrape some irritation to send it for pathology review to rule out or confirm malignancy.

Thanks for your reply! I asked about Blue Light and he said, “we don’t do that here”. It’s the University affiliated hospital, btw 🙄 No cytology, no further imaging ordered. I’m making calls now to try to get a second opinion. I see hematologist tomorrow (all this bleeding has made my iron tank). Can I ask her to order anything?

A hematologist is not an oncologist but she may be able to give you a referral. I would seek a NCI hospital/institute ASAP.

I went through something similar. I also had clots. Urologist had no urgency. His colleague surgeon had no urgency. Cleveland Clinic Weston, FL initially agreed with urgency, then disagreed. Same with University of Miami and Baptist South (Miami, FL). Baptist MD Anderson agreed and Mayo FL agreed. Backup plan (out of pocket) in Germany agreed. Point is: advocate for yourself!

University hospital is NCI. I was seen at a satellite branch 🙄 I was able to get an appointment in a different office on Thursday. I’m going to ask for urine recheck, this time with cytology, and uro-CT, to be performed at the university. I’m hoping this urologist is interested in solving this mystery.

Sounds like a far better start! You will be in my prayers!

Thank you ❤️

I’m so glad that I was able to get a 2nd opinion today! The Dr identified a caruncle and still insisted on further testing to rule out stones and tumors. She sent urine for cytology and ordered a uro-ct. I’m feeling far more confident in her approach.

Pretty good odds it is benign in this cause. But always better to be safe than sorry.

The good news- bladder looks good. The not so good news - likely renal cell carcinoma. I’m heading over to that group now. Thanks for all of your support and wishing you all peace, strength and love ❤️

Hey Nifty! I’d like to ask how are you but you don’t have to tell, I think I know.

So, mid May this year I had a CT (30 days after the last one) on my abdomen and pelvis then headed home. Phone rang and it was the gastro doc who had ordered the CT. She said she had just got a call from the radiologist saying they found something but I needed a wider scan because they couldn’t see the entire issue. I needed to go back for another scan, they performed the scan and and ER doc told me I had cancer, bladder cancer. Went to a urologist that handles cancer. Biopsied to be a low grade (not aggressive, slow grower). Which was good news. Turns out that my bladder didn’t have cancer, the cancer was in my right ureter (tube urine drains into the bladder-sorry if you knew that, I’ve seen some words I can’t pronounce and don’t know what they mean). Urologist tried lasers to remove the cancer twice didn’t have much luck. So, my right kidney was removed last week. He explained that if the tumor was close to my kidney or bladder he could’ve excised the tumor by cutting the ureter out with the ureter and stitched the remaining ureter back to my bladder or kidney. Because this thing was in the middle of the ureter there was no way it could be reattached suturing couldn’t be done. So, my 2 scans were done 30 days apart and if the tumor was on the previous scan doctors misdiagnosed things all the time. Has the doc sent you for a CT and if he has did it scan the ureters??

Stay strong and be your best and strongest advocate, if that doc won’t repeat the scan, find another doctor. You have to fight for yourself unfortunately. I’ve spent too much time in rehab facilities because there are so many seniors that have nobody advocating for them, fight for yourself. Who cares if the doctor thinks you’re pain in the ass, he or she works for you.

I’m 64, cancer is the last thing I needed to hear. I 2011 I ended up with a super severe case of pancreatitis, got life flighted from the local hospital to Boston ($29,999 one way) and I was kept in a medically induced coma for almost 3 months and then more than a month in inpatient PT and thankfully didn’t die but it was close. In total I have had over 55 surgeries, I lost consciousness while driving 2 1/2 years ago. I drifted into oncoming traffic and hit another vehicle head on at 60mph and I did not survive the crash. I flew in the life flight again, they got me back and I spent the next 4 months in ICU at the local trauma center and another month or at another rehab facility. Doc’s took my license because apparently they thought I was a danger because they didn’t know why I passed out but they think either a diabetic emergency or a cardiac emergency. But I won’t take the chance of driving again because I’m not sure I could handle killing somebody else, like a mom or child. The accident put the other driver in the hospital for an overnight for observation but it was my fault. I’ve had a lot medical shit happen and spent a lot of time in the hospital so I didn’t need this cancer thing. 4 years ago a good friend got bladder cancer and they took his bladder out and he has a bag now. So I’m very thankful all I lost was a kidney. Push your doc or see someone else. These days you’re all you’ve got to fight for. Good luck! I’m looking forward to seeing your updates.

Bob