The meeting with the urologist will finally let you know more of what you might be facing. The important questions for you to understand are:
What is the grade of the tumor?
Low grade tumors are "good news" but are very likely to return.
High grade tumors require immediate treatment...often BCG as Jim has mentioned, but let's not worry about that until you know if it is indicated.
Is the tumor localized in the bladder lining or is there any evidence that it
has spread into the muscle? Was there enough muscle tissue included in the biopsy speciman to make this determination? Often a second TURB is done when it is unclear whether the muscle is involved,
Where do we go from here? If the tumor is low grade, the usual protocol is for follow-up exams every three months for two years, every six months until five years have passed, and then annually forever. IT IS CRITICAL THAT YOU KEEP THESE APPOINTMENTS AS BLADDER CANCER CAN, AND DOES OFTEN, RETURN. If it is high grade, BCG or some other treatment will be recommended.
Some urologist do a wash with mitomycin after a TURB and some do not.
Wishing you the very best...and please let us know the results.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Rebecca, your options and your treatment path will depend on your pathology report. I know that you're probably thinking about the worst-case scenario right now, because that's what most of us do when we are first diagnosed. For me, waiting for the pathology results was the hardest part.
In my case, I was diagnosed with high-grade transitional cell carcinoma. I am fortunate because it was a large tumor, but it was superficial and did not penetrate below the lining of the bladder. I had my initial TURB, then a second TURB about six weeks later to get a deeper sample with muscle tissue. Immediately after the first TURB, the doctor put mitomycin in my bladder. My understanding is that the mitomycin is used to help prevent seeding of any cancer cells that might have been left behind when the tumor was removed. I also had all of my slides from both TURBs sent to Johns Hopkins for a second opinion.
Since my tumor was high-grade, my initial treatment path was six weekly treatments of BCG, which I completed on 10/01/15. I had my first cystoscope post the initial BCG treatments in early Dec '15 , and there was no evidence of disease (NED). I will go back for another cystoscope in early March, and most likely start my BCG maintenance treatment after that scope (if I get another NED). Maintenance treatment is usually three weekly BCG treatments every three months. As much as I dislike all of these scopes and treatments, they have all been very doable.
Some questions that will be answered by your pathology report are whether the tumor was invasive or non-invasive, and its grade (high-grade or low-grade). Once you have that information, there are some standardized treatment paths that most doctors follow.
Take care, keep us posted, and try (easier said than done) to relax.
Dx 5/28/15 with 4.2cm x 2.2cm Ta HG Papillary TCC; 2nd TURBT 7/09/15, NED; 6 BCG completed 9/30/15; 3 sets of BCG maintenance completed 1/26/17. Six cystoscopes - all NED. Moving to scopes every 6 months, and no more BCG maintenance.
3 years 9 months ago - 3 years 9 months ago#50298by jimjeffcoat
There are folks on the forum who are far more knowledgable than I am, but just a couple of thoughts:
Do you know whether they gave you Mitomycin in the bladder after your surgery? Seems to be very common to have this done, which is what I had after my TURBT.
The concern with the pathology would be not only if the tumor is low grade or high grade, but also how far into the bladder lining it has invaded.
Low grade &/or superficial tumors generally require no additional treatment, other than observation with frequent cystoscopy.
If the tumor is high grade or is more invasive in the bladder lining, then further treatment usually includes monthly BCG. This is a medicine they put into the bladder, I think monthly for about 6 months or so.
In a city the size of Atlanta I'm sure there are urologists and cancer centers that specialize more directly with bladder cancer, so I would check around if you are not happy with the care you have received.
I'm somewhat new to all of this myself, so hopefully someone with more experience will answer also.
Happy New year!
3 years 9 months ago - 3 years 9 months ago#50290by rkp
Hi! I'm a 61 yr old female that was recently told I have bladder cancer. I was having blood in my urine every once in a while. I went to my primary care physician and he did urine test, then referred me for Ct scan. The ct report did not show anything. He then referred me to a Urologist. The urologist sent my urine for cytology and scheduled me for cystoscopy the following week. He then reviewed the ct scan and he saw what he thought was a tumor in my bladder. The cytology showed atypical transitional cells present. The cystoscopy confirmed tumor. I had TURBT this morning. The urologist said it was a large tumor and he has sent it off for pathology. I have an appointment for next Friday with him to discuss results and treatment plan. He said treatment will be determined after he knows if it is low, medium, or high grade.
I am located in metro Atlanta GA area. This is all new to me and don't know the right questions to ask.
Last edit: 3 years 9 months ago by rkp. Reason: Spelling and added name