Questions from a BC beginner.....

Thanks to all....
Sorry to make this so long, but I am not sure what is the most important in the reports. I omitted the parts that were redundant. I hope that someone knows what this means.

Path report after 1st TUR At Casa Grande Hospital, Az.
INVASIVE PAPILLARY UROTHELIAL CARCINOMA, GRADE 2
NO MUSCLE INVASION SEEN

path report after 2nd Tur
1st of 7 samples
UROTHELIAL (TRANSITIONAL CELL) CARCINOMA, HIGH GRADE (2004WHO/ISUP)
FOCI SUSPICIOUS FOR LAMINA PROPRIA INVASION ARE SEEN.
MULTIFOCAL UROTHELIAL CARCINOMA IN SITU (CIS).
MUCOSAL ULCERATION WITH CHRONIC INFLAMMATION AND FOREIGN BODY GIANT CELL REACTION CONSISTENT WITH PREVIOUS BIOPSY SITE.
CYSITIS CYSTICA GLANDULARIS.
DETRUSOR MUSSCLE IS PRESENT AND IS NOT INVOLVED BY CARCINOMA.

2nd sample
.....
NO DEFINITIVE LAMINA PROPRIA INVASION IS SEEN
.....

3rd sample
.....
THE CARCINOMA SUPERFICIALLY INVADES INTO THE LAMINA PROPRIA.
FOCI SUSPICIOUS FOR LYMPHOVASCULAR INVASION ARE SEEN.
.....

4th sample
......
FOCI HIGHLY SUSPICIOUS FOR LAMINA PROPRIA INVASION ARE SEEN.
DETRUSOR MUSCLE IS SEEN AND IS NOT INVOLVED BY CARCINOMA.
.....

5th sample
URINARY BLADDER, ROOF, TRANSURETHRAL BIOPSY
UROTHELIAL (TRANSITIONAL CELL) CARCINOMA, HIGH GRADE (2004WHO/ISUP) INVOLVING VON BRUNN'S NESTS.
......

7th sample
URETHRA, PROSTATIC, TRANSURETHRAL BIOPSY
UROTHELIAL CARCINOMA IN SITU (CIS)
FRAGMENT OF HIGHLY ATYPICAL EPITHELIUM WITH SIGNIFICANT THERMAL ARTIFACT

COMMENTS:

sample 7
A portion of the lesion shows extensive cautery artifact in a region that shows features suspicious for invasion, although the histologic distortion makes definitive invasion impossible to ascertain.

Samples 1,2, and 4: there is a significant procedural artefact throughout, precluding definitive assessment of lamina propria invasion.

samples 3 and 4 have been reviewed by Dr. A. Parwani who concurs with above interpretation.

Hi JC....really important to see what that path report says...
The ratings are tricky with Hospitals...only in that some that are highest on the list for Urology may not specialize in bladder cancer but other urological problems..i.e. prostate)..some do such as Hopkins and Cleveland.....but then there are omissions on the list such as USC/Norris which is considered the "birthplace of cystectomy" and is one of the best places to go for bladder cancer. There are also some absolutely top specialists in bladder cancer that are associated with Universities that are not even listed. I see your present surgeon Dr. Huang was a fellow at USC/Norris and probably trained under 2 of the best..Skinner and Dr. Stein. I would definately ask Dr. Huang how many cystectomys he does in a year and if he does nerve sparing...the top surgeons perform at least 60 a year. I suspect you have a very good surgeon if he was able to get all those tumors out...wow...thats a lot. And the scarring on your bladder and irritation is going to take a while to heal.
Dependent on your insurance and if you can seek a second opinion out of state we can guide you to some of the best. I would seek the second opinion now and bring your path reports and slides as top centers usually want to do their own TURB and pathology. I did my second opinion at Memorial Sloan in NYC and they took one look at my slides and pretty much said "Second TURB" which actually is recommended anyway now. But i did not have my first TURB done by a prestigious hospital like U. of Pitts.
Pat
Pat

JC,

As jack mentioned, the need to void so often is normal after TUR and gets better with time to the point it should get back to your old "normal".

I started using a condom catheter at night after my RC because it takes a while to get night time continence. I used to have to get up every hour or so also but it was because of prosate issues (not cancer but BHP and cystitis). If you find that having to get up so often is a problem, you may want to google "condom catheters" or "external catheters". It rolls on like a condom and has and end that connects to a catheter bag. You throw away the condom part every day but you can use the catheter bag over and over. I use them for a month at a time, rinse it with water every day, rinse with water/vinegar mix every week, and then throw it away after a month. You can get cath bags for less than $3 each and condom catheters for about $2 each (less in bulk).

For what it's worth....but I found being able to sleep through the night every night is something I wish I knew about before.

Best of luck!
Mike

Welcome JC,

Sorry you wound up having to join the club, but since you have I'm glad you've found this site. There is a wealth of information here. Read the BLC Information on this site to get some basic information.

As Jack mentioned, you want to get the pathology report. If you had CIS in addition to the tumors, that has relevance for treatment.

If it is invasive (into the muscle) then RC is something you and your uro (and 2nd opinion doctor) should discuss.

If it is CIS, then BCG has been very succesful for many, many people. Check out www.bcgoncology.com/treatment/bcgInst.html . Dr. Lamm is world renowned for his BCG treatment protocols.

Don't be surprised if you can't start BCG at the 6 week mark. If you are still having bleeding, they sometimes prefer to wait until that stops in order to reduce the risks of side effects.

I failed BCG treatments, which means that I had a severe reaction after the second instillation so my uro stopped the treatment and switched me to Mitomycin instillations (which I also failed after 3 instillations). I am in the minority though. The majority of people go through BCG. Sometimes they have to reduce the strength of the dose but, according to Dr. Lamm, there is not evidence that the reduction causes reduced efficacy.

If your BC is not invasive yet, then you may want to hold off on the RC idea. You should also know that they remove the prostate when they do an RC.

Most uro's will want to try BCG or Mitomycin instillations to reduce the recurrence of the bladder cancer. Most likely, they will have you come in for a cysto exam every three months to keep an eye on things and catch it early. I would suggest that you ask them to do cytologies and FISH tests at each of the 3 month cystos as well. CIS can be invisible during a cysto exam but cytologies and FISH (both tests of the urine) can reduce the chance that they miss it.

Once you get the pathology report, let us know what it says.

Since I live in Colorado, I wound up going to the Anschutz Cancer Center at the University of Colorado Hospital once my BC came back. It was just shy of two years when mine came back (but there are different types of cancers and some are less aggressive than others). Mine was only CIS, which tends to be very aggressive. After my RC, I am fine and cancer free though.

I also went to MD Anderson in Houston which is ranked number 1 for cancer hospitals and number 9 for Urology. Have a look at the rankings of hospitals here: www.usnews.com/directories/hospitals/index_html/specialty+ihqcanc for cancer.

For rankings of Urology, look at this list: www.usnews.com/directories/hospitals/index_html/specialty+IHQUROL/

The top 2 for urology are within striking distance for you. Johns Hopkins in Baltimore and Cleveland Clinic.

Let me reinforce what Jack already said. Feel free to ask ANYTHING. Nothing is too personal on this site. Many of us have been through what you are going through now. Even though some of us are cancer free, we keep coming back to this site to try to contribute and help new folks out because we found the site so helpful from the beginning and still do now. I still ask questions related to my neobladder and the folks here are great at sharing experiences.

Mike

I would wait until a few more people on here respond to your post.
I am not qualified to recommend another Uro in your area, but I am sure a few on the site are aware of top Uros in the area.
I know the Cleveland Clinic is one of the top in the USA.
It is good that you were already thinking of a 2nd opinion. It is a must with bladder cancer.

In fact on Sunday nights at 8:00 pm your time zone, we have an open chat.
I recommend you join us tonight. You can ask a lot of questions to some very experienced and knowledgeable survivors. Just click chat at the top of the page.

Hope to speak to you tonight.

Jack

Thanks for the info..... I am being treated at the University of Pittsburgh Medical Center by Dr Huang. He seemed to have an impressive resume.

They say that the cancer is of the invasive type, but has not yet invaded the bladder muscle. I will dig out the path report and post the details later.

I plan to get a second opinion after the next Cisto, should I be making that appointment now?

Thanks again, and good luck with your continued success.....