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Urethral Stricture

12 years 3 months ago #6361 by Alice L.
Bawa,

You stated, "I am now on 1 year cystoscopies. I was worried about the possibility of damage from being scoped every 3 months, but I was also worried about the consequences of not being scoped every 3 months."

Why not every 6 months instead of 1 year?

I was diagnosed in April of 05', I have had a cysto every three months since then and every time I have had new tumors, so I was glad my doctor prescribed the every three months.

Just something to think about.

Wishing you all of the best!

Alice

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12 years 3 months ago #6358 by wsilberstein

If he has been free of cancer for >5 years and this is the only enduring problem and he is not seeing progress these conservative measures then it would make sense to go with the surgery

Dear Wendy:
Thanks so much for your input, and your effort to get information. I could tolerate the dilations for every cystoscopy and can't say I ever had major symptoms from the stricture until the episode in December when everything got so inflamed I was in pain for a month. It's not that I'm anxious to have a procedure done. I'm willing to wait and see if the stricture can still be managed conservatively. But I can't have a urologist who thinks what I went through was not related to the stricture and treats the whole incident as if it was inconsequential as long as I'm cancer-free. When you consider the role inflammation plays in cancer development and the inflamed hemorrhagic appearance of my bladder when the covering urologist opened the stricture at an operative cystoscopy, I hope I'm lucky enough to remain cancer-free. Anyway, we'll see what the new urologist says. I have an appointment on July 11. He's young, but was recommended by a urological oncologist I've been in touch with from Harvard. I figure 20 years from now, when I'm old (I'll be 59 tomorrow, July 1)and need a really good urologist, he'll be experienced and still active in practice ;D
-Warren

-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant...

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12 years 3 months ago #6352 by Rosie
Bawa,

It is good to have confidence and trust in your doctor. Sounds like you did all the right investigations of him. I have learned not all urologist recommend an every 3 month cysto the first two years. Even when I was diagnosed 7 years ago the group at Southwestern Medical Center had different protocols depending on the doctor. Mine was every 3 months but others there were every 6 months. I felt to scared and threatened to wait 3 months at that time because I did not have all the information I have now.

Rosie Ambs

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12 years 3 months ago #6347 by Bawa

Warren,

I have resisted the protocol of an every 3 month cysto because something in my soul told me that it could not be very therapuetic to invade and traumatize the urethra and bladder that often. That is one reason I am so hoping an accurate and universally accepted urine test can be found that can tell if a threatening recurrence has happened. Notice, I said a threatening recurrence. Not all recurrences need immediate treatment or surgery as stated and proven by some long term studies on low grade papillary growths that were just monitored rather than removed. Rosie Ambs


Hi Rosie,

Your viewpoint is something that my urologist agrees with.

I am now on 1 year cystoscopies. I was worried about the possibility of damage from being scoped every 3 months, but I was also worried about the consequences of not being scoped every 3 months.

Anyway, after having my cystoscopy last Thursday. I had a chat about my switch to yearly checks.

My urologist is convinced that 3 monthly checks are not necessary for me as I had one smallish, low-grade urothelial tumour.

I am inclined to believe him. I have looked into his record as much as I can. He is a senior consultant at the largest urology department in Scotland, which is situated within a major teaching hospital and cancer centre.

My GP thinks very highly of him-and I think very highly of my GP-and the nurses at the hospital all say that he knows his stuff as he specialises in both bladder and prostate cancers.

So I'm willing to trust his opinion.....for now.

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12 years 3 months ago #6335 by wendy
Hi Warren,

I'm glad to see you know your options! I got this response from Dr. O'Donnell:


Urethral strictures occur after some form of trauma resulting to scarring and circumferential tightening of the urethra. Mild forms can be incised (cut open) or balloon-dilated. This is usually the first step. However, the recurrence rate is often >50% because the tissue is diseased with a restricted blood supply so it tends to retract back down and scar again. At this point once can either persist with daily self-dilation in the hope of getting the scar to “set” in an open position. This can take 6-12 months. Or – one can go with an open surgical revision where new fresh healthy tissue is brought in to repair the defect in either one or two stages. The success rate is usually over 80%. If he has been free of cancer for >5 years and this is the only enduring problem and he is not seeing progress these conservative measures then it would make sense to go with the surgery."

Hope it helps,
Wendy

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12 years 3 months ago #6186 by wsilberstein
Hi Wendy,
There are treatment options, each with it's own morbidity and complications. Periodic dilation remains an option since my stricture is short. Opening surgically is an option which I've had twice at operative cystoscopy. Laser is another option which has also failed me. A stent can be placed... migration of the stent is a possible complication. An open repair can be done (Ouch! with prolonged catheterization and all). I will explore my options with my new urologist. But I sure would love to hear from anyone who has a stricture about what symtoms they've had, especially since my urologist basically shrugged off the stricture as being a significant concern. And I can't believe him, which is why I have to go to a new urologist.

-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant...

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