Recently diagnosed & scared

7 months 1 week 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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7 months 1 week 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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7 months 1 week ago - 7 months 1 week ago #59947 by Alan
Replied by Alan on topic Recently diagnosed & scared
Welcome RileyNH,

Take the deep breath and be aware that most of these are beatable and treatable! Going to a URO was a good move and the progression of tests is very logical and normal. My PCP tested for an infection first after passing gross (visible) blood (hematuria) and that is about the biggest difference in our comparison. That sent me to the URO promptly. Urination issues alone often will not always send someone to a URO.....although I think it is still good idea for anyone else reading our threads as bladder cancer does not always present with blood. CT scan with cystoscopy are the "gold standard" for protocols and a second TURB is done when the first reveals high tumors or other indicators. So, you appear to be in good hands. Waiting about 6 weeks is also about right to let you heal from the first and is good medicine to confirm things. Along those lines, some opt for a second opinion for fresh eyes and peace of mind. Drinking lots of water is always good.

Your other symptoms? By all means let your Doc know about those. The CT scan should have ruled out other issues. I know after I was diagnosed every pain or creak I was asking myself is there more. My brain was in overdrive. That went on for 6-8 months. Keep posting as you go as someone here will have some insight. Read about about BCG and other immunotherapies as that is the normal protocol for high grade, non invasive tumors. Last item, if the URO hasn't warned you, your area that was burned/cut should pass a clot 10-17 days post. I did and would have freaked out had I not been warned.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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7 months 1 week ago #59949 by RileyNH
Replied by RileyNH on topic Recently diagnosed & scared
Thanks Alan. I appreciate the quick reply and the thoughtful response and will continue to educate myself on this disease, treatment and my options.

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7 months 1 week ago #59950 by RileyNH
Replied by RileyNH on topic Recently diagnosed & scared
Thanks Sara Anne. I appreciate your reply & insight and feel good that I'm following the appropriate process and next steps.

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7 months 1 week ago #59952 by RileyNH
Replied by RileyNH on topic Recently diagnosed & scared
Not sure if this is the place to post this follow up but I am curious if people in the same situation and timeframe as me get a PET CT scan done. Based on some of the physical issues that I am having I am wanting to see if the cancer has spread that would require an immediate treatment strategy. Thanks again

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