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Introduction
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.
Thank you,
Rebecca -
11 Replies
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Hi Rebecca, as others have stated, if the cancer is “high-grade”, BCG is usually recommended, as it helps to prevent the tumor from coming back. High grade types of tumors have a recurrence rate that is pretty high (>50%). Using BCG can help to reduce this recurrence rate and, from what I have read, is highly recommended in the case of high-grade papillary tumors. BCG is basically a weakened Tuberculosis (it is the same thing used in tuberculosis vaccines in children) that helps to stimulate the immune system to fight abnormal cell growth in the bladder.
I am in the same boat as you…just had the TURBT and they identified high-grade papillary, so I will start BCG soon. Another opinion would not hurt, right?
Best, Jeff
12/2015 – TURBT, non-invasive T1, mixed grade, 3 tumors
1/2016 – Begin BCG weekly for 6 weeks
I’m in complete agreement with Sara Ann and Alan on this one. Please get a second opinion. May is an awful long time to wait with a high-grade diagnosis, especially with no treatment.
You can have your doctor send your slides to John Hopkins for a second opinion on the pathology. Per your post, the path report showed no muscle in the specimens. In my case, the tumor was deemed high-grade, but there was no muscle in the initial TURB samples. So to help ensure an accurate diagnosis, I had a second TURB to obtain a better specimen, and had the slides from both TURBs sent to John Hopkins to verify the pathology. Once I was fully healed from the second TURB, I started my 6 weekly treatments of BCG.
Please ask your doctor why he/she hasn’t scheduled you for a second TURB – and why he/she hasn’t scheduled you for BCG treatments.
I wish you the best. Please keep us posted.
LilyG
5/2015 4x2cm HG Ta Papillary TCC; 6 initial BCG followed by 3 sets of BCG maintenance. Ten scopes – all NED. Now at scope 1x year.
Rebecca,
I have to chime in also. May-which will be 4 months is is simply too long wait for a re-check on high grade cancer. While none of us are doctors, a follow TURB is often done on high grade to verify margins were adequate and a CT Scan of the urinary tract is pretty standard also. BCG immunotherapy is also a normal protocol. Does your URO see a lot of bladder cancer? So many deal mostly with prostatic issues or female issues.
Sara Anne said, a second opinion may very well be needed.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
Well Rebecca, now you know what you are dealing with.
I am surprised that the urologist didn’t prescribe BCG ASAP. Did he mention this or did you ask? High grade is not to be fooled with.
Perhaps a second opinion on the possibility of treatment?
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
I received my pathology report today. High grade papillary urothelial carcinoma. Carcinoma invades the Lamina propria (pt1). 4 x 2 x 0.7. No muscular propria (detrusor muscle) is present for evaluation. I am to return in May for another cystoscopy.
Thank you. You listed a lot of good questions for me.
Rebecca
Thank you for the information. I feel i have so much to learn.
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.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
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.
LilyG
5/2015 4x2cm HG Ta Papillary TCC; 6 initial BCG followed by 3 sets of BCG maintenance. Ten scopes – all NED. Now at scope 1x year.
Thank you for responding. I do not know if he gave any medicine in my bladder. I will ask him when I go for my appointment on Friday.
Happy New Year,
Rebecca
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!Jim J. Oklahoma City
TURBT w/ Mitomycin 12/14/15 (PUNLMP)Sign In to reply.
