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First Treatment Today

10 years 6 months ago #17078 by ddoyle
Cynthia:

I appreciate your taking the time to look into this and post a reply. I am quite sure that most urologists who perform a lot of cystocopies would say the same thing as what you were told. Nevertheless, it's just too much of a coincidence that this condition would suddenly occur following the repeated trauma of four cystoscopies in a little over six months. I've checked out enough websites and literature to be pretty sure that it is Peyronies. What I'm not so sure of is that there's much we men who are having these Cystoscopies so close together can do.

I mentioned this to my urologist and his reponse was predictably the same as the person you talked to. I even went to the trouble to take a photo (it's only evident when erect) and will show it to him perhaps on my next checkup.

I understand your position. Hopefully no one else on this forum will encounter this problem. Perhaps I'm truly one in a thousand?

Thanks again.

David Doyle

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10 years 6 months ago #16934 by Cynthia
FYI

I could not find any information on repeated cystoscopies being linked to Peyronies Disease. I dropped the question to one of the top Urologists in the country and his answer was that it was not very likely. So I guess at this time the answer is that there is no known link between cystoscopies in men and Peyronies Disease. Not very likely would tell us that it is not impossible but on the other hand it can happen in healthy men with no apparent reason. I would defiantly see an Urologist that specializes in Peyronies Disease if you think that is what you are dealing with.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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10 years 6 months ago #16797 by Julie
Bob, you will be able to travel again. I know every delay in treatment is aggravating but it happens to many that the BCG treatments get interrupted. We were able to full time 5 years after my husbands bladder cancer was diagnosed back in 2001. We were on a shorter leash as we had to return to Wisconsin every 3 months for 18 months then it was every 6 months.
Reactions to BCG vary some people it hits hard and the Dr. has to reduce the dose. Missing a dose or two just means it takes longer to get 6 BCG treatments. Then it will be a few weeks until they can do a cystoscopy. Julie

Volunteer Coordinator
ABLSC

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10 years 6 months ago #16779 by momof4
Slabman...I don't have anything to add about your treatments...but I have found that when you follow your gut instincts...you rarely are wrong....don't second guess yourself...but it is ok to second guess the Dr's...

I hope you and your wife can get on the road again ASAP!, Maybe the gas prices will go down by then. LOL

Wishing you well,
Karen

Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.

Life isn't about how to survive the storm, but how to dance in the rain.

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10 years 6 months ago #16773 by Patricia
hmmmmm....Dave...maybe your doc should read this....
http://www.wrongdiagnosis.com/p/peyronies_disease/causes.htm
Pat

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10 years 6 months ago #16772 by slabman
I don't know about that, but I do find that original cysto was a killer to my plumbing. It took a few weeks to get all the scarring healed over and only now can I urinate more normally again. But all those trips in and out can't be good long-term for one's urethra.

I'm still fighting a bladder infection likely caused by one of those catheter insertions. It's delayed my BCG's now by 2 weeks. This is killing me and the Wife, since we sold our home last year and now live in a motorhome, set up to travel throughout the Country. We've already lost our trip to Alaska this summer and wonder what's next...or if we will EVER be able to travel again.

Bob
T1 G3
Age 66
DX April 2008
TURB April 2008
Last BCG (#15) April 2009

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