9 years 2 months ago - 9 years 2 months ago#37671by Patricia
Well i do tend to rattle cages Bambi. I sincerely was taken aback when your husband has been battling bladder cancer for quite some time and now a urologist in a single practice is saying it is now Grade 3. As a urologist at a large university center Dr. Wilson is well aware of potential pathological errors ( truly it is in the 50% range) and i would expect her not to make any recommendations until she saw the slides. I was told by Memorial Sloan that the slides had to be presented before a consult. It didn't take them long to determine that the sample was not a viable one and Dr. Herr scheduled me for re-turb immediately 2 days later. I was indeed T2 but my local uro left part of the tumor and did not obviously get the margins.
I wonder who did the pathology on your husbands TURB? Maybe they sent it to the U. of C? If that is the case then i could see why she would make a determination based on a written report only.
The staining is probably to determine the P53 gene..whether it is a wild type or not. That determines agressiveness. Several years ago 30 institutions were involved with determining the variant of P53 lead by USC/Norris.
And with all the pain he's having ..either a reaction to scraping the tumor near the ureter or an infection..why not take a peek? Why not do a test for infection?
Maybe i haven't heard the full story?
I only truly want your husband to have the very best care.
And if jj gets on here..he's a pathologist...he will tell you that they will not package up all of the tumor..they will only take a hopefully potential slice of it so they should be able to send to Hopkins another sample for a second opinion. And Hopkins is one of the best (#1 in Urology) and they will also be fast. Dr. Jonathon Epstein one of the best.
He is using the Pyridium, Anita- thank you for the suggestion though. Today he was taking the Pyridium and the Detrol. However, he had stopped the Pyridium at one point and maybe not taking it caught up with him. Maybe after a couple of days on those, things will start to look up. He also has had that flank pain that was annoying him earlier.
Hopefully, tomorrow will be a better day.
Thank you all again for all your help and support. Patricia, I do apologize if I seemed a bit brusk. I think all the stress and uncertainty is beginning to get to me. I guess I was surprised at your response as Dr. Wilson seems to have such a good reputation in Colorado. And you are certainly right in that she did say what my husband wanted to hear. In all honesty, after being on the board here, I would almost be relieved to have someone suggest cystectomy. Because I absolutely, positively want him alive before anything else. He was pretty convinced she was going to lean toward RC. But I do want to reassure you that her personality was a nice bonus, but would never be our primary criteria. Thank you again for trying to steer us in a good direction. I am a bit in the middle, trying to be a good advocate and wife, but knowing if I push the husband too much he tends to dig in his heels.
Thanks also to Anita, Cynthia and SaraAnne. Cynthia, that was an interesting resource for sending just the slides in. It seemed to be a link for Johns Hopkins rather than MD though- that's fine and would be great, but did you mean to send something else? I wonder if this "restaining" that Dr. Wilson mentioned she would be doing with the slides would keep them from still being appropriate for sending for an opinion- I guess I wonder if that will spoil them in some way. Forgive my ignorance about that-being a newby on the site.
Thanks again- you all have such an incredible amount of knowledge about all of this.
One more thing -- your husband may want to get a prescription for Pyridium from Dr. Wilson or his local urologist ASAP. Pyridium is used to treat pain, burning, increased urination, and increased urge to urinate; it is the drug that turns the urine bright orange.
I am glad that you saw Dr. Wilson and have a plan of action. I hope the medication that she gave your husband does calm his bladder. Having to go to the bathroom every 15 minutes has got to be exhausting and very discouraging.