Good morning. The sequence of your situation sounds good, it's how things were performed that seem questionable. Lack of communication with a doctor and uncertainty of the procedures would invite your being "scared". After 2 rounds with a urologist, I pulled out to get another opinion. Very smart move, I think. Good luck if you do so also. It takes time to settle into the frightful diagnosis, and increase understanding of your own situation. Hope this forum provides some help. Come back and keep us posted.
Trenton, Sorry you have to join our club, but you came to the right place! The thing I hate the most is a doctor that is rude or has no manners. I have had this surgery sooooo many times and never was "scraped" so deep. A second opinion is in order ether to find a kinder and or a better doctor.
Once you have more information from the biopsy of your tumors, you will have a better idea of what's happening and where to go from here. There will be three pieces of information you'll need to know and should be given: (1) type of tumor e.g., transitional cell (the most common type) and its form, e.g., papillary (sticking out from the bladder wall, like a little mushroom); CIS (carcinoma in situ, flat on the bladder wall). (2) Grade: how abnormal the cells look-low grade are close to normal cells, high grade are very "deranged" and abnormal looking. (3) Stage: how far the cancer has penetrated the bladder wall. You should also find out how large the tumors were, as that can also influence treatment recommendations. There is a lot of information on this site that explains all this in more detail.
The procedure for removing tumors is called a TURB or TURBT, and involves excising the tumor from the bladder wall. I'm not quite sure why the term "scrape" is used, which makes it sound something like shaving, which it really isn't. The Dr. will often excise an area surrounding the tumor, and will try to go deeper than he thinks the tumor has progressed. Getting good "margins" both allows for better diagnosis, and also makes it a bit more certain that the Dr. has gotten out everything he/she can. It is common (and often advised) that a second TURB be done some weeks later, to make sure everything was removed, either by the same Dr. or another one if you are seeking a second opinion.
As to the "chemo" the Dr. was going to instill in your bladder, it was not the type of chemo given in other cancer treatments, but most likely something like mitomycin which is often given to stimulate the bladder's immune response. It's not the end of the world you weren't able to get it, but the reason sounds a little odd to me. I can't quite imagine a urologist excising a tumor to the depth that it would potentially compromise the bladder wall and cause leaking of the mitomycin.
I'm not sure how your urologist would know you've had this bladder cancer for a long time. Maybe you should ask him when you go for your follow-up appointment. Xrays would not show bladder cancer; if the tumors are flat (CIS) and they aren't looking closely for them, I'm not sure they would show up on MRI either, but I'm no expert. I presume some of these xrays and MRIs were done in connection with the kidney stones. I had a papillary tumor which was suggestive in an ultrasound exam; followed up with a CT scan which revealed it more clearly; and confirmed by cystoscopic exam. Cystoscopy is really the best way to diagnose bladder cancer. Tests of urine for abnormal cells is also sometimes done, but is less accurate than direct visual examination.
Please come back here after you've learned more. There is a lot of information on the site, and people here who can help with your questions. Even if you just want to "vent" or worry, folks will lend a sympathetic ear since so many of us have gone through what you are going through.
Small TA Grade 1, May-06; recur (2 tiny), same, June-08; TURBTs both times. BCG begun July-08, dosage to 1/3rd May-10, completed treatment December-11. All clear since 2008.
5 years 6 months ago - 5 years 6 months ago#47016by Trenton
I was diagnosed on 9/3/14 with malignant bladder cancer (3 tumors) after a cystoscopy was performed. I am a 59 year old male and have suffered from kidney stones for over 10 years. My urologist performed a procedure where he scraped the cancer from the bladder wall on 9/10/14 and was planning on filling the bladder with chemo. After the procedure he told my wife the he had to scrape too deep in the bladder wall and was afraid to put the chemo in for fear of it leaking out of the bladder. My follow up wit him is this coming Tuesday 9/16/2014. I came home with what I believe is called a foley bag...hopefully it will come out next visit. I am so glad I found this site and have learned so much. My urologist has no bedside manner and tells us nothing, I know will be armed with a list of questions for my next visit. Not sure what to think about my bladder wall being so thin he's afraid of putting chemo in, and I m wondering what the next step may be.
It is what it is but my urologist said that I have had this cancer for a long time and as many MRI's and X-Rays I have had over the years I question why this wasn't found before.
Last edit: 5 years 6 months ago by Trenton. Reason: Wondering if anyone has an answer.