Yikes! Invasive tumors after 4 years of low-grade

Patricia wrote:
Thanks for the encouraging comments, and the encouraging paper.

Have you had many problems or complications since your surgery?
I am seeing Dr. Colberg, and will ask how many of these procedures he does.
I am a New Yorker at heart, and considered that, but Yale (and Colberg in particular) came highly recommended. They are also about 20 minutes away. But I should learn more about the department and the doctor after my TUR next week.

Thanks for the advice.

Hope this part of your journey goes well --- even if it starts with bummer information. Take Care, Herb†

Hi Kat,
Well Bummer!! Actually in the hands of a surgeon trained in doing the Indiana pouch its not such a long surgery. Mine was 4hrs and 20mins. A lot of the surgeons do not want to do them as they are the most complicated but they are the most continent and i can refer you to papers to verify that. Just saw a paper today on continent diversions and posted it in Articles of Interest.
www.europeanurology.com/article/S1569-9056(10)00118-1/fulltext
oops you have to copy and paste that one as it didn't all come up in blue..start at the end of the sentence to the front to copy.
All diversions have a training period even the ileal trying to find the right appliance.
I see where Dr. Foster sort of specializes in female urology so if anyone can do an Indiana it ought to be him? But you do want to ask how many he does in a year or whomever you go to.
www.yalemedicalgroup.org/YMG/directory/public/profile.asp?pictid=65286&department=PB247594&physicianList=109186
And honestly, just me mind you, if i was in Conn i would get on the train to Memorial Sloan for a second opinion as there are a ton of specialists there for only bladder cancer. And you would love Micheal Donat
www.mskcc.org/prg/prg/bios/335.cfm
my best to you.....pat

I used to participate here beginning in April 2007 when I was first diagnosed with non-invasive, low-grade papillary urothelial carcinoma. Since then I have had 7 TURs, and the first five showed non-invasive tumors. I received Mytomycin-C after the second TUR; and six weeks of BCG about a year and a half ago. All to little avail, as the last two resections (March and May 2011) showed high-grade tumors with some penetration into the muscle layer.

My urologist referred me to the Smilow Cancer Center at Yale-New Haven hospital, and I will have another TUR there next Monday. After that, it seems likely that I will need to have my bladder removed.

This is all alarming. I’m trying to take this one step at a time — less likely to over-react that way — but I have also been reading up on invasive BLC here so I won’t be completely surprised by the doctor’s recommendations. What a wealth of real-world information this forum provides!

It seems my options are likely to be an Indiana (or similar) pouch or an external bag. I am pretty sure I would prefer the internal pouch, but understand that it will call for longer surgery and a more difficult adjustment. And for all I know it may not be possible — guess that will be a discussion between my doctor and me when the time comes.

I am 70, and have severe osteoarthritis (back and knees). I was supposed to have knee replacement surgery this spring, but the bladder trumps the knees for now.

Expect to have many questions. Thanks for being here.