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Cystoscopy Dread

1 month 5 days ago #59726 by busaman
I started my bcg three weeks ago. The catheter the first time was quite painful. I let out a big yell. The second time, I knew what to expect, so it wasn't so bad, but still bad enough. The doc said "Don't worry, this only takes 30 seconds."
I do my third one tomorrow. Hope it's a little easier.

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1 month 5 days ago #59725 by EdFlaherty
Just wanted to mention that I have a 40% VA disability rating for bladder cancer.
If you haven't filed for Bladder Cancer, you should.
Check this BCAN Agent Orange site:
https://www.inspire.com/groups/bladder-cancer-advocacy-network/discussion/vietnam-veterans-only-your-age-at-time-of-diagnosis/?page=1#replies

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1 month 5 days ago #59724 by Alan
dradclif01,

Welcome and thanks for your service. I am pretty well convinced Agent Orange has caused many vets real problems. Including bladder cancer.

As Sara Anne indicated, BCG works in a good majority of cases. It is doable although some side effects are no fun. It is better than systemic chemo. The catheter used is smaller than cystoscopies. Yes, discuss your retention issue with your doc. Perhaps they will have more ideas. Even if 30 minutes or 60 minutes it is better than none at all. Plus, the 2 hours is simply a suggestion or start . On my 11th and 12th instillation I was down to 30-45 minutes as I simply couldn't not hold it.on this

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 5 days ago #59723 by sara.anne
This is a subject for a discussion with your urologist. The "instructions" for BCG say that you should try to hold it for "up to two hours." I usually made it almost to 1.5! BCG is the standard of care for high grade, non-invasive bladder cancer. Its purpose is to kick-up the immune system in the bladder tissue so that it fights and rejects any cancer cells. It is not the most fun but it is surely better than the chemo that many cancer patients need.

Many of us here on the Forum have had BCG and are now cancer-free (me? 12 years!) IF your urologist feels that given your retention issues it is still a viable option it is certainly worth a try IMHO. If it fails, which is possible, a radical cystectomy is always available. But remember that this is very complicated and stressful surgery with a long recovery time. At least a try at BCG would be a good option,.

Sara Anne

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

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1 month 5 days ago #59722 by dradclif01
Hello, everyone, my name is Don I just entered this forum a few minutes ago. I was first diagnosed with bladder cancer in December of 2019. I Had my first Cysto in Feb 2020. The cancer was removed from the wall and it all was a piece of cake. No problems what so ever. On July 25 I had a second one and it had come back and was removed. Three biopsies were performed and no cancer found in the muscle. Just yesterday my doctor called and wants me to begin a six-week regimen of BCG. Upon researching the procedure I discovered that the bacterium must stay in the bladder for two hours. I urinate at least every thirty minutes. How do you hold your urine for two hours? I do not believe I could do this. And turned the procedure down. Please enlighten me and let me know how you did. I am a Veteran and was exposed to agent orange and have other illnesses caused by it, including Diabetes, Hypothyroidism, heart disease, high blood pressure, PTSD, and a host of several others. I'm 73 years old and in no hurry to leave this world and my grandchildren. Should I attempt the BCG or just go ahead and have the bladder removed. Any input would be greatly appreciated. Thank you.

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5 months 7 hours ago #59346 by October28
Thank you both for this input.

My cysto went well this time with sedation, and included a sample for biopsy of bladder wall. Mine is Non invasive, no suggestion of invasion of bladder wall, but two high grade tumors. The MD wanted to also get biopsy of wall since we were using sedation, why not also get this. I do not yet have biopsy results but am feeling good. I am 64 y.o. and live in Los Angeles area and I am at a good hospital/med group. Clearly my challenges are more psychological/emotional than physical/medical, due to trauma over the initial cysto for which I was not prepared (I dropped that MD after cysto).

I have found Ativan helpful for BCG anxiety, which is mostly my problem due to some trauma over the initial cysto, and am trying to see treatment as something more than invasion, indeed assault, actually good for me. The side effects of the first 6 BCG have been pretty easy, and temporary for the first two days following infusion of BCG.

Michael H.

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