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Hi, I turned 60 years old in September 2015 and was diagnosed with bladder cancer in October after a cystoscope and a TURBT. Pathology was Ta and T1. During the TUR, my bladder was perforated and I spent 3 weeks in hospital recovering from an open surgery to fix it. A follow up cystoscope in December led to second TURBT in January 2016 to remove CIS. A Third cystoscope in February showed more CIS and a third TURBT in March was done for another biopsy. And on Monday I had a PET scan… Good news is that cancer is confined to bladder, but bad news is my bladder is hooped and Dr has recommended radical cystectomy. I’ve had neither BCG nor chemo treatment.
Although I just found out about BCC forum, there seems to be good info here. Any feedback on RC options: IC and bag, Indiana pouch, or neo-bladder would be appreciated.
Hi Treeline,
Glad you reached out to BCC. Sorry to hear about your BC. The good news is that it is confined to the bladder.
I had a similar situation (with the exception of a perforated bladder) in that mine was TA and presence of CIS. I had BCG treatments right away…it came back twice (without CIS) and after each TURBT I received BCG. My last TURBT was nearly 3 years ago and I’ve been cancer free since. My last 6 month Cysto was this morning…I’m on bladder watch every 6 months which is fine by me.
There are many on this site who have had a RC and who can provide you with much valuable info on IC, neo-bladder, etc. I am sure you will hear from the experienced soon. However, I’m wondering if you have a copy of the pathology report and if you’ve considered a second opinion before the RC. It never hurts to have a second expert have a look over and I’m sure your URO would not/should not object.
The Past President of BCC is Jack Moon who is an active support member and who you may hear from in any case. Meanwhile, I would suggest a call to BCC contact number at the top of this page and ask for info on how to go about getting a second opinion.
Wishing you the very best / most favorable outcome..please keep in touch.
God Bless,
Rick.
Hi Treeline
If you believe you would like a 2nd opinion from a Urologist at a major cancer centre we can assist you. Just call the number at the top of the page or private message me. Many on the forum have had their bladders removed so hopefully they will share their personal experiences on the type of diversion they decided to go with. Also we do have patient support volunteers that you can speak to, just contact Randy Smith at the above number and he will arrange.
Wishing you all the best,
JackHi Jack, Rick,
Thanks for your quick responses and suggestions. Having read through some of the threads in the forum, I have better understanding of what my future may be. I will certainly call to talk. It has been quite the ride since the uncomfortable symptoms last summer to the unimaginable diagnosis this spring!
Thanks,
BobHello Treeline
Have you asked your uro what his experience with bladder cancer is? One thing I have seen and experienced myself, experience with bladder cancer is essential. Otherwise you can have uros jumping the gun regarding bladder removal.
In my experience, if I had a less experienced uro I probably wouldn’t have a bladder now. With my first surgery, unknown to everyone, additional tumors had sprung up and were closing off urine flow. My uro was able to re-establish urine flow without a stent. Second checkup, had four more tumors. Uro’s original thoughts were BCG failure and he was scheduling that appointment to discuss removal. He then reviewed the file and changed his mind and decided the tumors were probably there with the original surgery but too small to see. A year later had CIS tumor and heading for surgery again. Uro said not to worry. I didn’t listen. Since then have had 3 clear checkups. Uro was right. I will listen next time.
Anyway, a lesser experienced uro could have made very different decisions. Have also seen uros that give up too easily. Saw this in the surgery room with the uro that did my third surgery. Less experienced by far. Was on the phone telling a nurse that there was nothing more she could do with another patient. Talked to another person that had her bladder perforated by the same uro. Uro missed one tumor completely with my surgery. When I talked to her about the surgery results, I told her that things didn’t feel right and I didn’t get the relief I usually get after surgery. Week later had scope and, sure enough, there was the second tumor that was reported with the scope prior to the surgery.
In regards to perforation, I understand this can happen at any time especially with bladder spasms that can happen during surgery. For my first surgery, the uro had a lot of problems with spasms. Even wrote about this in the report. Never perforated the bladder, though. I like him.
In the meantime, Treeline, take a deep breath, two or three or four or however many it takes. Then hug those you love, spend time with those you are close to. Take time and allow yourself to cry. Then find something to laugh about. Then you will start healing.
May 1st with be my second anniversary since confirmation of cancer.
Take care
CherylWelcome treeline. It is always wise to seek a second opinion. If it is contained in the bladder and not invasive and not in the wall of the bladder; get a second opinion for sure.
in my case, severe bleeding at the emergency for 4 days non-stop, cysto, turbt.
Pathology report:: stage 3 high grade and invasive and aggressive. 3 weeks of research; and I chose the Ileal conduit. I was 72 at the time. Surgery 26 May 2014
nearly 2 years ago. I am doing fine, no restriction and used to the new nirmal. Surgery lasted 5 hours and 20 minutes. Bladder, prostate, 26 lymph nodes and seminal vesicle. (not so good news!,). At 60 you are still young, if you wish to have children, save your sperm prior to surgery. After surgery, we only get three quarters of the fun!.Do your research before deciding. I do everything I was doing before, no restrictions. Keep in touch with this site, lots of experience and good advice.
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