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Dad diagnosed with Non Invasive Papillary Urothelial Carcinoma- High Grade
Hello-
My dad (age 66) was recently diagnosed with stage0a non-invasive papillary urothelial carcinoma High grade and a TURBT was performed last Friday.
Doctor said he got all of tumor out but now my question is this- doctor said no further surgery and my dad is meeting with the doctor to discuss medical management. I think the doctor was under the assumption that this would be low grade so he advised early no further treatment would be necessary.
My dad has Lupus so would the BCG even be an option?
Also What is the prognosis? I am so heart broken right now I don’t even know where to begin? Can my dad live another 5 or 10
Years? He’s in otherwise really good health. Active, eats healthy, lifelong non-smoker.I am thinking of getting a second opinion from Stanford. If anyone has any opinions on Stanford, I welcome comments/ suggestions….
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11 Replies
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This is a question he needs to ask his doctor. We are not doctors here, just patients who have been through similar issues.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
And sorry for the additional information- but my dad is taking Isoniazid (has 10 more days to go) for a positive TB skin test- and wondering if that impacts effectiveness of the BCG treatment?
Alan thank you- your post made me tear up. Thank you for your support. This responsiveness means so much to me. Thank you again!
Sara Ann- gosh thank you so much! I am so grateful to have found this site.
Another quick question- my dad had a positive TB skin test and was talking a 9 month antibiotic- can this positive result (and the antibiotic) make him resistant to BCG treatment?
Thank you again!
Don’t be sorry for “all the posts.” I was in a real panic when I got my diagnosis! You are correct that bladder cancer has a nasty little habit of returning….whether it is low grade or high grade. However, your dad’s urologist will be keeping a close watch on him so that any recurrence (and there may NOT be any) will be caught early. The usual protocol is to schedule cystoscopy exams every three months for 2 years, every six months until 5 years have passed, and then annually forever.
As we have indicated, this is a highly treatable disease when caught early, as your dad’s was.
Do ask any questions that pop up!! (And be discriminating in your use of “Dr. Google.”)
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Hey, I am guessing all will be well. Caught early like almost all cancers it is beatable and treatable. Stanford as a second look is what I’d do, and you are doing it! Most of us come through stronger and more effective in life. You and you Dad will too!
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.
Thank you both Harold and Sara Anne! I typed my message before I read your Sara Ann- so thank you! I am sorry for all the posts. I am just processing all of this right now…
Thank you both again!
Thank you so much for responding. I really do appreciate it!
I am almost in tears when I found out it as high grade- from all the medical literature I have read, it appear that there is a high reoccurence with “high grade” tumor. My dad’s pathology report reads “high grade papillary urothelial carcinoma.” Does this mean that the cancer will definitely come back and will come back more aggressive? In searching through Dr. Google- I have read studies which show it will reoccur at a higher rate but comes back in the same form- non-invasive papillary (if caught early during monitoring) and other studies that indicate this cancer will come back more aggressive and individuals with this type of cancer are at increased risk of muscle invasive cancer?
Gosh I just feel so overwhelmed with grief right now. My dad is meeting with his doctor on Monday and we are working on getting a second opinion at Stanford.
I was diagnosed with high grade non-invasive bladder cancer over 11 years ago and am still fine, with no signs of bladder cancer. (pTa means the bladder cancer is still confined to the very top layers of the bladder and has no signs that it has gone any further….a “good” diagnosis!)
The lupus is a complicating factor, of course. So whatever treatment your father has needs to be coordinated with all his physicians. For non-invasive bladder cancer, there is no additional surgical treatment. BCG is the treatment most used when the cancer is high grade and it is very effective in over 70% of the cases. There are many of us here on the Forum who have had it and are doing great. It does have its side effects, but they are nothing compared to what people who need systemic chemotherapy go through. IF your dad does have BCG there is lots of information about it on this Forum if you just use the SEARCH function. There are other options than BCG such as Mitomycin, that are not quite as effective but are used if a patient is not able to receive BCG.
Since lupus might be a complicating factor in your dad’s case, a consultation at Stanford would not be a bad idea. It is an excellent place for bladder cancer treatment.
It is great that you are an advocate for your dad and that he does not need to go through this by himself. The odds are that he will be fine!!
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Welcome and pat yourself on the back being involved in your Dad’s treatment! With lupus you need a complete “team” in this complex situation. Be sure whoever he sees on that is involved. Being high grade BCG is normally used but, I don’t know with lupus to even guess as no one here are doctors. Stanford does sound like a good idea if nothing else for a set of fresh eyes and peace of mind! Keep posting, someone smarter than me may have better observations. And, yes, your Dad can easily live another 10+ years.
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.
And correction- it was stage Pta according to pathology report
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