Newly diagnosed Invasive..Need Support

Julie,

I was 38 when diagnosed with stage 2 bladder cancer that was upgraded to stage 3 with 2 nodes involved after surgery. I had my surgery at UCLA. Dr. DeKernion did the removal portion of the surgery. He did a fantastic job! Apparently I am compact on the inside so my surgery was complicated and took 12 hours, the majority of that was on the removal. He managed to get 34 lymph nodes. He was fantastic, came to see me at least 5 times after the surgery even though he was not in charge of my follow up care the other surgeon was. Personally gave me the news that cancer had been found in my lymph nodes.

The surgeon who was in charge of creating my neo-bladder, we will call him Dr. L, was not as good. I never saw him in the hospital and only saw him twice for follow up. The last time he was brutal when he removed my Supra Pubic catheter. He removed it and the stitches with no pain killer and no warning. The nurse was appalled by the way he ripped it out and apologized profusely as she helped me recover. He had left the room the minute he pulled it out. Apparently my body had started to heal around it and it did not just slide out.

I did not do enough research before my surgery! He had not done many surgeries on women. I have a neo-bladder that is neither fully continent or incontinent. I am almost 2 years out and have come to bitter terms with the fact that I will always leak a little in the day and am completely incontinent at night no matter how man times I get up. I still do all the pelvic floor exercises and hope for some promising treatment.

I am not telling you this to scare you. I am telling you because you are doing what I did not. You are researching. Find yourself the best surgeon for women. We have different issues than men and your surgeon needs to recognize this. Pat has given you some excellent names.

I am always happy to answer any questions you have either here or by email.

Webs

Julie...you're in a great area of top surgeons in bladder cancer in S. California. USC/Norris is kind of the birthplace of cystectomy. Currently head of Urology is Dr. Inderbir Gill
who also can do this surgery laparascopically..i know..he did my Indiana pouch when he was head of Urology at The Cleveland Clinic..in 4hrs and 20 mins...HE's Good!
www.usc.edu/schools/medicine/util/directories/faculty/profile.php?PersonIs_ID=3840
contact number is 323 865 3707..Blanca his personal Asst.
Also there is Dr. Eila Skinner another top uro/surgeon
www.usc.edu/schools/medicine/util/directories/faculty/profile.php?PersonIs_ID=1090
As for robotical surgery..ala Da Vinci...its a good thing in the hands of someone who has performed over 100 of them..you don't want a newbie with this surgery
Being Stage 2 which is into the muscle and Grade 3,d chemo is usually the recommendation prior to cystectomy and reconstruction. But having said that make your appt. for that second opinion taking your slides and CT reports and blood work with you.
I was stage 2 and grade 2 with no outside involvement so chemo withheld til after cystectomy results and no nodes were involved so no chemo. I personally interviewed 7 uro/surgeons in a months time..from coast to coast and inbetween. It was not a waste of time as I found they all pretty much knew one another and all were qualified...it boiled down to location and my gut!! I painstakingly did tons of research on the internet by going to each of the top cancer hospitals and universities and looking at bio's of the doctors in urology and their interests and the papers they had written and then narrowed it down to those who did WOMEN...that was a bit trickier. You want someone who is capable of doing all 3 types of diversions, someone who does 60 plus a year of reconstruction, someone who knows how to do nerve sparing on women..YES ,,we have nerves also.
Hope this helps.........Pat
and by the way i'm 8 yrs out!

Julie,

You clearly have your head about you FAR better than I did when I was diagnosed! Holy cow, it took me 2 weeks just to grasp that tumor in bladder = cancer. Then another month before I could do any kind of effective research. Hat's off to you!

Life is definitely not over because you have been diagnosed with this crap at such a young age! It's just a speed bump that you gotta get by. I did a blog while I was going through mine, and if you are interested, it's still online at www.caringbridge.org, under "christinespringfield". I had chemo and then the neobladder as M.D. Anderson's team thought that would be the best way to make sure they killed every little cancer cell in my bladder area. Better safe than sorry... Everyone is different though, so do what's right for you. Honestly, for the peace of mind, it was worth every bit of that "go-go juice" and it's side effects.

Concerning doctors, I am going to let Pat or someone in South California answer your questions. I do know that Pat has incredible knowledge about the best surgeons and oncologists all over the country (and I think in other countries, too).

The hard questions will get easier with research and input from various doctors that deal with bladder cancer all the time. This is one time that you do not want to settle for anything but THE BEST. Find THE BEST, get their opinions, ask tons of questions, make sure they know what's MOST important to you (for me, being able to have sex again was REALLY important, wearing a bathing suit again was #2) and come back here for input. There is a lot of knowledge available here.

I used to carry a small notepad in my purse 24/7 and every time I thought of something I didn't know, I would write the question down. When I went to see the docs, I would whip out the notepad and run down my list. I made sure to jot down their answers, too... I was a bit scatter-brained at the time. I would really recommend doing that. I also kept a running list of all my meds and doseages. That got to be somewhat challenging to remember off the top of my head.

Thanks so much for your appreciation. The thing that makes me happiest in the world is helping people, so thank you for making my day!

Hang in there, Julie! We're here to help!

Christine

Christine,
I wanted to write a quick thanks for your posts. I was happy to see an active woman that was doing so well. As a 34 year old, It was great to hear how you have been able to adapt after surgery.
Julie

I too was just recently diagnosed with stage 2/3 grade 3 bladder cancer. I had a tumor removed three weeks ago. I am overwhelmed by the choices that need to be made. I have met with an oncologist/urologist at a California university hospital and will be going in to see him tomorrow for him to see the bladder for himself. This MD came highly recommended but doesn't do many neobladders (I would be seeing someone else at the hospital if that was the course of treatment). I am having a hard time with the decisions to have chemo before surgery (I am leaning that way after doing my own research - but because it is slightly inconclusive he said it would be my decision).
Also, there is a lot of talk about the robotic surgeries however the doctors I have talked to seem divided as to there benefit. Does anybody have an opinion about them after having had surgery?
I also am not sure if I should look into other hospitals in the southern CA area (USC, City of Hope vs. UCLA). I am sure any of the hospitals would be great but of course what to make to right choice. I am worried that if I spend time interviewing MDs, I will be wasting time.
Does anyone have any thoughts on how to make choices on the hard decisions besides getting educated?
Julie

Arthur,

I could not really tell from your post last week, but it sounded like your doctor was saying that a neobladder may not be an option because of muscle wall involvement? If I am reading that correctly, and you are interested in a neobladder, please do get a second opinion. I had muscle wall invasion and still was able to have a Studer Pouch (neobladder) "installed". Granted, everyone is different and I do not know your exact situation, but please make sure you investigate each option fully. This is one of those things that you can't go back and re-do.

Everyone on this board helped me a great deal when I was going through my cancer, and they still help with issues that come up from time to time. I only wish I had found this incredible resource sooner! The recommendations they have been providing to you are all excellent. I would also advocate doing anything and everything you can to avoid ileus. I was in the hospital for 14 days with it, and that was FAR worse than the bladder surgery itself. It sounds like medicine has been paying a little attention since 2007! YEAH!

Hang in there and keep us informed!
Best wishes,
Christine