-
What to do..what to do..?
Hello,
42 year old male here who needs some serious advice. I was recently diagnosed with Stage 2 – TCC with the presence of CIS. After TURBT, it took three pathologists to determine the depth of invasion (T1-T2?). it was finally agreed that T2 – high grade w/CIS is what I have. After TURBT procedure, Mitomycin-C was instilled for 2 hours. After being told about the gold standard for invasive bladder cancer, I decided to find a major cancer center in my area. After waiting almost two months to get an appointment, I was finally able to see someone at a major cancer center. After waiting another 3 weeks for a cystoscopy, because the urologist wanted to take a look for himself. The bladder looked completely normal! Like nothing had ever happened, nothing like the pictures that were taken during the first TURBT. Unfortunately, the urine cytology showed cancer cells in urine. Possible presence of carcinoma in situ? Now I am really undecided about what to do. Doctor says I have a 50% chance of beating this with chemo/radiation and a 30% chance of it not coming back because of the possible presence of carcinoma in situ. Should I trying bladder preservation or just get it over with an have a cystectomy. Unfortunately, more and more long term compilations are being discovered with some of the urinary diversions (especially the neobladder). The more I read about it, the more it concerns me because of my young age.What to do..what to do..?
-
2 Replies
-
Oh Geez…you would never put Mitomycin C in a T2 invasion. It sounds obvious to me he did not get any of the muscle or enough of it to determine if there was invasion or not.
And Major Cancer Center is a bit of a misnomer as far as i’m concerned……what you want is a major cancer or university center that deals with tons of bladder cancer.
You need a Re-turb by a top uro/surgeon and if you’ll tell me where you are unless its Hungary i can probably help you get to the right person. This is not the right guy!
pat -
Can’t tell you what to do but some things to think about.
The radiation part of that chemo/radiation regimen could put you in a situation where you don’t have the option of a neobladder or Indiana Pouch. Ask the Doc at the major cancer center.Once you’re at stage 2, you really don’t want to mess around. Having to wait MONTHS for an appointment is terrible!!! What cancer center are you going to.
Especially at your young age, if you get cystectomy, you want the best damn surgeon you can get. That nerve sparing part of the prostate removal that goes along with bladder removal is tricky. If you want the equipment to be in functioning order, you want someone who does tons of these surgeries and has an exceptional track record at the particular diversion you want AND at the nerve sparing part.
That business about the bladder looking completely normal sounds pretty strange. There certainly should be evidence of the prior surgery. I would ask the doctor to explain how that is even possible. It sure sounds to me like it would indicate that your first TURBT did NOT get down to the muscle layer.
Did the 2nd surgeon do the reTURBT or did he just say he couldn’t find where it was??? If the latter, that certainly raises some major red flags.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.Sign In to reply.
