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Posted By Pax,
What a great site to get “real people feedback”
I have had two TURBT’s in the last two years and both biops come back with Lamina Propria with “some” Muscularis proprai present ( T1)
My uroligist wants a RC and I want more biop’s and TURBT every 6 months
Ready all the info on RC’s leaves me a bit puzzled if T1 is a GO for RC or should I try for 5 more years of TURBT’s with a Go for RC at the T2 stage ( if it goes to T2)
I belive Prayer and time are on my side and I would like to live another 5 years ” comfortably” ( 70 now)
Saying gooodby to my Bladder and Prostrate is difficult
Hope to hear from others who are going thru this Black hole of decision making
cpax
Reply from Greg Neely:
Pax:
I expect Jack (our president) will move your post to its own dialogue, but welcome to our site.If the tumour is only in the lamina propria it is T1 but I am not clear whether when you say there is some muscularis propria present whether you mean in the biopsy or the cancer is in the MP. You certainly want muscle involved in the biopsy so they can rule out muscle involvement I assume this is what you mean). If the cancer is in the MP, however, then it is stage T2 and bladder removal is the gold standard.
It sounds like you have a copy of the pathology report (if not, I suggest you get one for your own records). It should also state the grade – high or low (sometimes 1,2 or 3 with 3 being high grade). The higher the grade, the more aggressive the disease and the more likely to recur.
I was where it sounds like you are about two years ago. I had T1 and had six TURBTs due to recurrence plus many, many immuno and chemo treatments intravesically (into the bladder). I did not want to lose my bladder in spite of the high grade disease. However, my cancer did progress to T2b and my bladder, prostate, etc was removed in December 2010 with the reconstruction of a neobladder. Big surgery, big adjustments, long recovery, well worth it now in my own case!
It is often a good idea to get a second opinion at a major cancer centre so that you can be sure the best treatment is being recommended. Jack may be able to help with a recommendation should you be interested and if it is appropriate for you.
Keep us posted.
Gregthis is always a tough one. For sure you do not want the muscle to get involved. And also for sure is that you will need to be followed very closely if you decide not to have an RC. I agree with Lynda and Greg. A second opinion is always a good idea, for everyone. Certainly there are many who go a very long time having close follow up, TURBS and treatment for a long time. I can understand why you would want to go that route. It does present a bigger risk in some cases so be sure to talk to you doc to be clear on the biopsies, etc. I have given this this a lot of thought myself not knowing what I would do if my CIS progresses more than it has. My best to you. Please keep us informed.
Kiowa
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