Hello and welcome, Joel. As you have astutely observed, you are among others who have walked this path ahead of you. Let your wife know that bc is treatable. It is important that she go with you so you can double-team the doctor and get as much info as you can.
It is a good thing that you have educated yourself about your diagnosis, and I am sorry you are not getting what you need from your doctor. You mentioned that your options are 'limited', but are there other uro's that you could see for a second opinion? We highly recommend getting a second from a hospital that specialized in BC. Sadly, reports have indicated that not all uro's are experts in bc, however, your uro has taken the right approach in getting you started on BCG right away.
Make a list of any questions either of you have and write them down. High grade bc can become aggressive, even if it is T1, which is why close monitoring is so important. See how you feel about your doctor after this next visit. If you're still not comfortable that your needs are being met, find someone else. You will be in a long term relationship with your bc doctor, so it needs to be a good match.
Let us know how it goes...
Best wishes... Catherine
Forum Moderator Team
TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Welcome to a club you didn't want to join!! I am sorry to hear that your uro's office disparages Tricare...great way to say "Thank you for your service," isn't it! My internist complains, loudly, about most insurances, so you are not alone. I am also covered by Tricare, but it is now a supplement to my Medicare and I am free to chose my own doctors.
As for your treatment plan, I suspect that your uro sent you straight to BCG since the path report indicated high grade. There was no point in waiting, and the sooner the better. Many urologists do a second TURBT about 4-6 weeks after the first to be sure of the diagnosis, and before starting any treatment. I was a good example....my first TURBT showed low grade, with some areas of "irritation" and the pathologist was uncertain. So we did it again since the doc now knew where to look. The second TURBT showed a high grade (CIS) and I was headed to BCG. Since your doc found high grade at the first pass, he was probably correct in recommending BCG asap. It sounds as if your treatment is "right on" for now.
Your primary problem is probably urologist personality! As Catherine indicated, it is a good idea to take notes and PLEASE be persistent in asking your questions. You are your own best advocate. AND I would not be bashful about explaining to staff exactly what Tricare stand for!!!
Best of luck to you...
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
The wife should have anxiety and fear, if you're not communicating with the doctor to discuss your specific condition. Not medical answers, but you're in the right place here to talk with 'been there - done that' people. And sorry the insurance gives you limited avenues to pursue. Talk of a 2nd opinion could be another uro, or, a specialist. Specialists may not be near you, creating a travel problem. Military was mentioned ......... VA options? Again, maybe a distance problem due to the frequent visits needed. I did NOT like my first uro, pulled out for another, and things improved. Better care, and far better communication. Don't be afraid to make a change, it's you taking charge to protect your life now. As someone once said, you and wife will form a team on this new battleground. Feel free to stop back often and talk to the group.
Joel, I'm sorry, but what the hell kind of doctor can't read a path. report! You need to find another Uro That will take Tricare. I know it will be hard because Tricare Is the govn. an they don't pay much. I worked for the govn. and in my opinion, if there hands are in it, it is bound to be messed up. If your uro won't talk to you and tell you what's going on or what the plan is that is not good. You don't want to mess around with high grade cancer to long. Where are you? I live right by an army base (Ft. Leonard Wood) and we have a real good uro that takes Tricare.
Joel, thanks for your service. As others have said a second opinion is often warranted and a second TURB is often done to be sure "margins" were correct for the path report. You will know more after the final round of BCG and another cystoscope.
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.