Recently diagnosed & scared

2 weeks 4 days ago - 2 weeks 4 days ago #60495 by mikequestions
Replied by mikequestions on topic Recently diagnosed & scared
Hi RileyNH,

I just had my first cystoscopy following the initial 6 BCG treatments, and my urologist did this in a procedure room in his office, and not in the operating room. This was very tolerable for me, and was over within minutes, and was easier on me than a BCG treatment. During the procedure, he took two biopsies of tissue from the inside of my bladder, while I watched it all on the same monitor he was looking at. 

From talking to my urologist during that visit, my take is that if there is obvious visual evidence of high grade carcinoma, they have to remove it with larger equipment that they use in the OR. This said, if your urologist sees a tumor like this with a simple scope procedure, he'd simply schedule you for subsequent time in the OR to properly remove it.

If I was you, I'd question why he wants to use the "big guns" on a follow up exam. I see the negative aspects as being these: If you're paying for this before your insurance deductible is met, it's probably going to be more $ out of pocket. Also, the potential for complications due to your neuropathy, also the potential for complications due to general anesthesia, also the potential for you to have to endure a catheter for a few days, also potential for more pain in recovery because the OR scope is larger in diameter.

The only benefit I can see to doing this in the OR, is that if you have a visually-noticeable recurrence of cancer, it can be dealt with in the same visit. However, in my opinion, the benefit doesn't outweigh the risk. I'd certainly question why he wants to do it this way.

Mike
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2 weeks 5 days ago #60492 by DonaldK
Replied by DonaldK on topic Recently diagnosed & scared
RileyNH

I know from my past experience that the anesthesiologist always has a chat with me before a surgical procedure and one of the questions is about fear of being 'put under' - I think the thought process behind that is issues for the patient coming out of anesthesia.

I am curious why the doc is doing the cysto in the OR to begin with, as all my follow-up ones have been in his office.

Do you know if he has plans of taking tissue samples?

My opinion is to discuss your fears with your team and find out what options can be provided - again just my opinion, but as I always say you are in charge of you treatment.

Let us know the outcome of your decision as well as the cysto results.

We are with you through your journey.

Ciao

Hi Grade T1 CIS
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2 weeks 5 days ago #60491 by RileyNH
Replied by RileyNH on topic Recently diagnosed & scared
Hello, I am scheduled for an OR cysto on Thursday. With my neuropathy and Inflammation being the enemy of neuropathy I am questioning whether I ask for an in office cysto instead. I fear the anesthesia and entire process of surgery for a possible 10 minute scope would have  a negative effect on my neuropathy. Probably a question for my neurologist but thinking of cancelling the OR cysto and requesting one in the office. Looking for opinions and feedback. 

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1 month 4 days ago #60449 by Alan
Replied by Alan on topic Recently diagnosed & scared
The cystoscope is the key! Cytology often will send false "positives". At the same time, I would quiz your Uro to be sure no more tests are needed.

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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1 month 4 days ago #60448 by busaman
Replied by busaman on topic Recently diagnosed & scared
my lab from last november said "suspicious for high-grade urothelial carcinoma" so the doc ordered another lab.  this one from last week just says "atypical urothelial cells," which is the lab result that started this whole thing about a year ago.  i already had my turbt and bcgs.  most recent scope shows no return of tumors.

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1 month 3 weeks ago #60386 by mikequestions
Replied by mikequestions on topic Recently diagnosed & scared
Hi Riley,

I will echo what others have suggested - give it a try!

For me, I cut back on alcholic beverages because I didn't want there to be a chance that it would thin my blood to the point that it may develop complications with bleeding. This was simply due to the fact that my urologist kept reiterating that it was normal to see blood (brown or red) during urination while undergoing BCG. This said, I didn't have any signs of bleeding, and was probably being overly cautious.

My 6th treatment was right before Christmas, so with New Years Eve right around the corner, I welcomed the new year with several glasses of champagne and welcomed the tears of joy and apprehension that surfaced because of it.

I wish you and everyone here a Happy and CANCER-FREE New Year!

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