Recently diagnosed & scared

2 weeks 4 days ago #60516 by Alan
Replied by Alan on topic Recently diagnosed & scared
I am not in your shoes but, I tell myself the cysto is usually no more than 5-10 minutes and it is over. Is it fun? No! However, I wouldn't want an OR visit as I have been knocked out too many times for worse things. Carotid, triple bypass, torn wrist ligaments, 2 hernias and other diagnostic tests. Cystos are a piece of cake after those others.

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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2 weeks 4 days ago #60502 by mikequestions
Replied by mikequestions on topic Recently diagnosed & scared
Hi Sara Anne,

I understand and agree with both your posts. RileyNH just completed his 6th BCG treatment and has not had a follow-up cystoscopy yet. The issue, as I understand it, is that his urologist (for some unknown reason) is planning to do this in the OR under general anesthesia, and not in his office. RileyNH - Please correct me if I'm mistaken.

Thanks,
Mike

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2 weeks 4 days ago #60500 by RileyNH
Replied by RileyNH on topic Recently diagnosed & scared
Thanks for the replies all. I will be engaging my neurologist on Monday morning to get him to agree that the surgery could be detrimental to my parallel condition and then engage my urologist. Don’t think he will like this change but for me it makes the most sense. Let’s see what he says Monday, if I can get in touch with him. 

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2 weeks 4 days ago #60498 by sara.anne
Replied by sara.anne on topic Recently diagnosed & scared
Maybe my post wasn't clear.  Cystoscopy (done in the office) and a TURB (transurethral resection of the bladder) are two different procedures with different purposes.  The samples your doctor "pinched off" during an office cystoscopy were sort of like urine cytology.  IF they indicate the presence of cancer it would be necessary to have a TURB under general anesthesia to remove all visible cancer and determine the extent of it as well as the grade.  This would not be possible in an office cystoscopy.  

I suspect that your urologist doesn't think cancer has returned, but is just making sure that what he sees during your follow-up is NOT cancer.  If the samples indicate that there IS cancer, he would do a TURB in the hospital.  Follow-up cystoscopy is never done under general anesthesia in the hospital.  

If he recommends a TURB is is essential that it be done,

Sara Anne

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

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2 weeks 4 days ago #60497 by mikequestions
Replied by mikequestions on topic Recently diagnosed & scared
Hi Sara Anne,

The tissue samples taken during my cystoscopy did not result in any significant pain for me. When he cauterized the sample sites, I felt a little "pinch" of pain, but it was definitely tolerable. There was no measurable pain after a couple minutes for me. In contrast, I did not like the lingering urethra pain associated with recovery from the "big guns" used in the TURBT. If I had the choice to have the follow-up cystoscopy done in a procedure room with smaller equipment, I'd definitely go that route.

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2 weeks 4 days ago #60496 by sara.anne
Replied by sara.anne on topic Recently diagnosed & scared
The reason that a TURB (not cystoscopy)  is done in the hospital under anesthesia is that it would  be PAINFUL.  The urologist is not only removing samples for biopsy but also removing as much of the tumor(s) as he can.  During your recent cystoscopy the urologist snipped very small samples to send for testing.  IF they turn out to be cancerous he will need to a.  remove them completely from the bladder and b.  take other samples from multiple sites to send to the pathology lab.  During a TURB the urologist also tries to include small samples of muscle tissue near suspected tumor sites to be sure that any cancer present has not invaded the underlying muscle.

Just as you, I had very small samples taken during a cystoscopy.  My bladder showed what appeared to be irritation cystitis from the BCG but the urologist wanted to be sure that the cancer had not returned.  He told me what he was going to do and asked it I thought I could endure it.  I said yes.  It was over quickly but did really hurt for a few seconds.  I wouldn't want to do it again!!  But the tissue samples showed what  the urologist already thought...no return of cancer, but irritation from the BCG.

Sara Anne

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