Recently diagnosed & scared

4 months 4 weeks ago #59946 by sara.anne
Replied by sara.anne on topic Recently diagnosed & scared
Hello Riley! Welcome to the club you didn’t want to join....

It sounds as if your urologist is doing exactly what needs to be done. The first TURB removed several tumors and gave a preliminary diagnosis of high grade, non-muscle invasive. It is considered excellent practice in such a case for the urologist to do a second TURB since he will have a much better idea of exactly where he should take samples. It has been shown that a second TURB increases the accuracy of the diagnosis significantly.

Most of the symptoms you describe are NOT typical of bladder cancer. If you did seek another opinion now the first thing a new doc would do is to schedule another TURB. My recommendation would be to see what the results of the one you have scheduled are. If you are not satisfied with the diagnosis or have further questions that would be the time to seek a consultation.

The time you are waiting for the second TURB will not make a difference in the outcome

Wishing you all the best

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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4 months 4 weeks ago #59945 by RileyNH
Recently diagnosed & scared was created by RileyNH
Hi all, thank you in advance for your support and advice.

I am a 55 yr old male that had some urination issues In may 2020. My PCP went down the path of prostrate exam and PSA. Ultimately he recommended monitoring. In late July it happened again, urgent need with pain. I was referred to a urologist who did an evaluation and ruled out an infection. On 8/22 I had blood in my urine and was back at the urologist the next day. Had a CT scan which found a bladder tumor and then on 8/27 I had a cystoscopy that confirmed 3 small tumors. The CT scan showed no other tumors in any other location. My TURBT was done on 9/14, so less than 2 weeks ago, and I had a catheter for 2 days. The pathology finally came back on 9/21 with a diagnosis of high grade but not muscle invasive. Doctor said that there is still a 33% chance that it is in the muscle and a second TURBT is scheduled for 10/26, exactly 6 weeks after the first.

Besides some lingering urgency issues my urination is OK with no blood or cloudy since a day or two after the catheter was removed. I have drank a small pool of water.

Since the first cystoscopy on 8/27 I have had bad lower back and flank pain along with burning in the groin. Within the past week I have pins and needles in my hands and feet with feet cramping. I am trying to advocate for myself and seeking further evaluation or treatment but because it is non muscle invasive at the moment nobody wants to do more except wait till after the 2nd TURBT. It is such a helpless and frustrating feeling that there is more going on and I need to take action.

Thanks for listening. Very scared in NH

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