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7 years 11 months ago #39379 by str0le
Thanks for the permission! This may sound like a dumb question, but what is the proper way of contacting USC to get a second opinion. My insurance plan is through Kaiser Permanente, an HMO...and I'm not sure they'll send me to USC for a second opinion. I may have to pay for this myself. I'll find out, but again, what would be a good way to do so? Do I just call the contact number on the sight? Any help would be greatly appreciated.

Again, thank you everyone! you are the greatest!

Bobby

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7 years 11 months ago #39377 by Patricia
Bobby,
Tops in urology and bladder cancer is USC/Norris. 4 top specialists, Inderbir Gill, Sia Daneshmand, Eila Skinner, and Stuart Boyd are all extremely experienced with bladder cancer and named as Best Doctors in the US. And Gill is an expert at laparoscopic surgery....i know. He did mine 8 l/2 yrs ago. Take a look at their bio's and see who seems to fit with you......
http://keck.usc.edu/en/Education/Academic_Department_and_Divisions/Department_of_Urology.aspx
Nerve sparing not only requires an expert surgeon but a lot depends on where the tumor lies also...
Major cancer centers estimate that understaging happens at least 50% of the time and if you listen to Dr. Herr at Memorial Sloan apparently he see's it about 75% of the time in his second opinion cases. So don't mess with this.......get the second opinion from the best.
UCSF is really really tops at a lot of things but not as good as USC when it comes to bladder cancer. If you can travel..do it.
pat

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7 years 11 months ago #39376 by sara.anne
Bobby, you are a long way from cystectomy, IMHO!! AND, a recurrence of the tumors is no surprise..that is the nature of this beast. I was diagnosed on my first TURB with very low grade papillary. HOWEVER, there were a few places of "irritation" where the pathology came back sort of uncertain, so a couple of weeks later my uro did another TURB with concentration on the uncertain areas, and the results came back..CIS. At that point, I was sure that I knew what I was going to die of!! Talk about depression!

BUT did a lot of reading and consulting on this web site and realized that it was not the end of the road. Had a complete series of BCG with maintenance, and am now 3-years out, so far, cancer free. I do realize that there is a chance it will come back, but also have faith that my urologist is on top of things. Also, he always tells me to "listen to my body" and I now know a few things to watch for.

Yes, smoking is one known contributor to bladder cancer, but lots of people who do NOT smoke get it also. We currently have no way of knowing what actually caused this. Does no good to stew about this.....I was never a smoker, but maybe I should not have married a smoker? Not gotten a degree in an area where I spent hours in labs full of chemicals? Who knows. Can't do anything about that now, anyway.

It IS important to be treated at a good place. I know that Pat has recommendations for San Francisco. Hope she chimes in here!!


Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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7 years 11 months ago #39374 by str0le
Wow...Such good insight. Thank you very much all. To answer your questions:

1.) I'm scheduled for I guess what you guys are calling a TURB. I had one back in May when they removed the Tumor and did what I think is called mitomycin treatment after the tumor was removed. The tumor I have now is not one that grew back. It's in a different location of the bladder. I saw the scar of the last one. My concern is basically that it grew back so fast. Within two to three months. And the red spots in my bladder now. (A biopsy of those will be done during the TURB)

2.) I had a copy of the pathology report, but have seem to misplaced it. I'm sure I can get a copy without any problems. Or I can find it. I'm sure it's here somewhere.

3.) I'm located in Central California. If you have recommendations for a specialty center, please let me know.

To GKLINE:
Thank you for all that you wrote. It gives me something new to consider and a better outlook on possibly considering a cystectomy (if it came to that.) I couldn't tell definitely, but could assume you had a cystectomy done. Did you have a nerve sparing operation and a neo bladder put in? I was told by my second opinion dr. that a csytectomy would definitely mean no more chances for erections. I'm glad that isn't true.

I'm just going through these spells. You know, those quiet moments when you can reflect on everything. Most of the time, I'm completely busy and trying to get things done; that's when I forget all about this bladder cancer. It's when I remember, reflect and now regret certain things I've done to cause this to happen. I'm a smoker and i did this to myself and my family. When i think of that, or think like that, it brings me down. But when I read that all of you have gone through this and are here typing away happily...well, that gives me some peace of mind. Thank you!

Thank you everyone. I appreciate all that you have done. Just hearing from each of you goes a long way.

Thank you sincerely,

Bobby

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7 years 11 months ago #39373 by GKLINE
Bobby

WOW! You move so fast I can hardly keep up with you! You seem to ask a question before you get the answer to the first one!

Slow Down!

You have a cancerous tumor in your bladder.
You will have a minor surgery (TURB) to remove the tumors. So they can be sent to a lab for analysis.
Then you will know the grade.

Next (in a couple of weeks) you will have a second TURB... to see if the tissue is clear of cancer cells. I you are, you may go on a maintainance treatment. BCG treatments are put in your bladder and, hopefully, they will keep the cancer cells away.


If you still have cancer cells after a second TURB, you may be in line for a Radical Cystectomy. At your age they will probably recommend a nerve sparing operation (so you can have normal sex after a recovery spell) and a Neo Bladder (they remove your bladder and make a new one out of your small intestine). This indeed is a major surgery and about a 3 month recovery. Natural sex takes anywhere from 6 months to a year to acheive.

You have acheived a wonderful life and a great family. It WILL not fall apart if your Company and Family appreciate your contributions to their welfare. The experience wil change you and your family....... In a GOOD way. If they are your team and you realize how important they are as caregivers..... You will be surprised to find how important the team is in kicking this thing.

You are Probably NOT GOING TO DIE. This is a bump in the road. BUT (And its a BIG BUTT) You need to get to the RIGHT People. People who know what they are doing with this disease. And People who have Done this operation A LOT! You will need an assembly line Physician. A person who has done it HUNDREDS if not THOUSANDS OF TIMES.

I am living proof that you will probably not lose it all.
I was 53 when I was diagnosed.... Own a multi million $ per year business.... have 3 great girls and 1 FANTASTIC WIFE.
I felt the exact same way you do now! Scared for myself and family. Worried that I would "lose it all!"

Had the Surgeries..... Did the recovery.... Keep up with my checkups.

Have a great family relationship with the kids and my wife. Couldn't have gotten thru it without Them!
Went through business hell a couple of years ago, but managed to find the insight to handle the challenges. I really think that battling cancer gave me those insights!
Have normal sex with my wife. Even though I had to go through a therapy recovery period for this too.
Have regained the positive outlook at life and am SOOOO excited to look at next year with my new racing car!

Good Luck. We'll be here for you.

George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]

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7 years 11 months ago #39365 by motomike
Bobby


Over reacting ? I guess we all have been there. It is important to maintain focus. Expend energy in the right direction.

Counseling? I rejected it shortly after surgery. That probably slowed my recovery a great deal.

I'm 70, retired heat/air contractor. After 4 months of keymo ileal conduit (IC) surgery removed bladder & prostate May 2010

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