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11 years 9 months ago - 10 years 4 months ago #11999 by egtmcsq

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11 years 9 months ago #11919 by Rosemary
Ian,

Could you be having bladder spasms? I hear that bladder spasms are very painful and though it's generally expected after TURB's I have not expereinced them yet.

They are painful so I hear.

Take care and Merry Christmas!
Rosemary

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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11 years 9 months ago - 10 years 4 months ago #11908 by egtmcsq

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11 years 10 months ago - 10 years 4 months ago #11404 by egtmcsq

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11 years 10 months ago #11403 by wendy
Dear Ian,

If this is your path report? It couldn't be better! Congratulations, I'm very happy to read there is no CIS and you're still stage Ta, Grade 1. And getting referred to the best in the area with all the trimmings (O'Brien at Guys London) is the icing on the cake..

About the mitomycin. Hmm. Two things: The guidelines all say that low risk tumors like yours don't need a 'course', but maybe a one-shot post TUR setting is offered. Riskier tumors are considered for an extended course of Mito, usually 6 rounds, sometimes more or with maintenance.

For the one-shot Mito (or other chemo drug) deal, which is the lastest guidelines from the EUA and AUA, the drug must be instilled with 24 hours, and preferably within 6 hours.

But...TaG1 tumors do not necessarily need or benefit from this approach, is the risk vs. benefit worth it? Not all experts agree. It's not a cure, but only a temporary solution to delay recurs up to one or two years. So, you might even skip it and still be within normal treatment standards with your single, (small?)TaG1 tumor and no CIS.

Over 3 or 4 cm is considered a higher risk tumor and more reason to get that one mitomycin instillation. But not necessarily, everything is negotiable. Let your doctor convince you, don't take my word for it, please.

Your last statement, 'i will also be having a course of mitomycin c
they have asked me to consider whether i would prefer myto first and then blue light or vice-versa have until Tuesday to decide"

Although I don't know how long you must wait for that appointment with the expert, my guts say....WAIT! See Dr. O'Brien, talk to him about your pathology report and whatever else, and get your blue light cysto first. Treatments like instravesical chemo or BCG can cause side effects that resemble inflammation and even CIS, you don't want false positives getting in the way of the best innovation to come down the pike in years- By that I mean the blue light cysto, Hexvix. (for those who are interested: http://blcwebcafe.org/hexvis.asp , it is not widely available in the US yet, but approved in Europe for a while now).

So...do you know for sure if you will get another cysto with Dr. O'Brien, and how soon after your TUR will that be? Maybe your first visit is a consultation only, good chance.

Sorry you are in pain, I hope the urine culture shows a simple and treatable infection, or that the pain just disappears on its own as you heal.

Take care and thanks for the update. I'm thinking about you- just across the English channel from me.

Wendy
PS the weather is gross, eh?

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11 years 10 months ago #11401 by wsilberstein

i will also be haveing a course of mitomycine c
they have asked me to consider whether i would prefer myto first and then blue light or vice-versa
i have untill tuesday to decide
not sure of the ramifications of this and would appreciate any help

Being given the choice kind of implies that it doesn't make any difference, but the urologist should explain the significance of the choice if there is one, otherwise how can you make an informed decision?
Mitiomycin C might cause inflammation. Does the blue light distinguish easily between CIS and inflammation? Might too much inflammation make the exam harder to interpret?
Does the Mitomycin treatment eradicate CIS so effectively that doing the exam first would establish the diagnosis (which might be important prognostically), but doing it later would establish the absence of CIS but you wouldn't know if it was never there or cured?
If it really doesn't matter, your urologist should tell you and you can flip a coin or decide what would make you happier. If the choice makes a difference, you need to know what you're choosing - and if anybody here can tell you, that's great, but Hey! Doesn't your doctor have any responsibility to provide the info!?!

-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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