Alaskan Tough

[Otstoia]

Im a male 65 yo. I've just gone thru BCG for my third time. I have cis in bladder lining. Specialist is saying after BC has come back 3x bcg will will not work on me. He wants to remove my bladder prostate etc. I'm thinking that there might be other options. Advice??

[Jimpa]

I'm a male 71 years old. I had aggressive bladder cancer and after 6 sessions of chemo, on Aug 8, had my bladder, prostate, and 19 lymph nodes removed. I elected to have a stoma with urostomy bag. I had CAT Scans in Sep and Dec which showed no signs of cancer so things are looking much brighter. My recovery was a bit slow but I am now feeling much better. Finding the right urostomy bad took some trial and error but we have one now. I change the bag weekly and it really hasn't effected the things I want to do, especially playing golf three times a week. Good luck.

Jimpa

[Otstoia in reply to Jimpa]

Jimpa, thanks for the encouraging reply. I lost my wife of 40 years last year and am still grieving her loss. At this point I don't want to spend the rest of my life alone. I've been thinking that if it comes to removal I would go with a neo-bladder. Just vain I guess. Any thoughts on that, did you look into it? Thanks and Happy New Year!

[Jimpa in reply to Otstoia]

I did look into the neo-bladder but decided against it. I asked one of the world's experts in neo-bladder surgery at USC (Dr Aron) what he would do if he was in my shoes, and he said he'd go with the stoma and urostomy bag. I felt there were just too many things that could go wrong. I am satisfied with my decision but suggest you get feedback from those who have gone the neo-bladder route and what ages they are. Happy New Year to you.

[Jim47 in reply to Otstoia]

My surgeon says he doesn't recommend neo-bladder to any patient over 40. He said that the learning curve is too great and the chance for success is small. Patients over 40 usually face a lifetime of incontinence. A urostomy really isn't that bad.

[wsilberstein in reply to Jim47]

I was 52 when diagnosed with TaG3 + CIS? Long story short, I was 65 when I had the RC. I got the neobladder and was completely incontinent. There was no learning curve. I dripped continuously. After a year I had an Artificial Urinary Sphincter implanted. The first AUS eroded my urethra. The second AUS's reservoir broke. But the third is the charm. I'm now almost 4 years post RC, more than a year without surgery, and pee when I push a button 😃

[Otstoia1 in reply to wsilberstein]

Happy for you but have a question. If ur ureatha is no longer working how do you pee/ from where etc. thanks

[wsilberstein in reply to Otstoia1]

My urethra works. The sphincter didn't work, so I had the AUS implanted. It's a little cuff that surrounds the urethra. It stays closed until I squeeze the pump and then I pee the usual way. When the cuff is closed it blocks urine from coming out so I'm no longer incontinent.

[Otstoia1 in reply to wsilberstein]

Thanks for the reply. I'm glad that works for you. Can I ask you what part of the country you're in and who your doctor was? Thank you

[wsilberstein in reply to Otstoia1]

I'm in NY. Surgery at NYU. RC by WilliamHuang.AUS by Benjamin Brucker

[ChrisRS]

Hi

I have had CIS return once after multiple BCG treatments, but the last two biopsies were clear fortunately. However, I know I could be in your situation in the future. I would definitely have a cystectomy rather than risk the CIS developing into invading tumours, as the prognosis would become much worse if you let that happen. The questions for me would be whether it's necessary to remove the prostate if you only have CIS or T0, and what type of urinary diversion to have. I think neo-bladder surgery (bladder made out of large intestine & urinate through penis) is getting better all the time and should be investigated, but as another poster says, it is complicated and may not be best for you. New European BC guidelines advise more consideration of post op sexual function, which is why I mention the prostate. Removing the prostate usually damages the nerve bundles running down the side of it, which affects erectile function. There are some ways to help erectile function if it is affected, but it is better if the nerves are not damaged, so I suggest you ask about this.

Good luck

Chris

[Otstoia in reply to ChrisRS]

Thanks Chris. Always good to listen to others and what they have to say. These are life changing decisions. I wish you well my friend!

[madnanny]

Hi I'm glad to hear that you have come through BCG. My Husband has just had some good news, after going through 3 sessions x 6 treatments he got the news that he is clear of Cancer however he has still got a few beningh polyps so he is having just 3 treatments to try to zap these polyps for good so it is worth sticking with treatments if you can,Good Luck

[Jim47]

I'm a 69 year old male. I had cystectomy/prostatectomy surgery in Aug. They were saying there would be an 80% chance of a cure. Unfortunately, my cancer has metastasized and is now in my lungs. I know this is not encouraging--and hopefully, you will fare better than I have. On a positive note, I have adjusted very well to life with my urostomy. There was definitely a learning curve, but only took about 3 months. If surgery provides a cure for you, it is a small inconvenience.

[Graham2812]

It seems to me that surgeons will generally want to operate! I had the choice early 2016 to have surgery or try an aggressive chemotherapy and radiotherapy treatment. I elected for the latter! I have since had biopsies taken and also a recent check via camera. So far, so good. My original cancers were a CIS and a localised tumour. The CIS was treated with BCG, the other surgically removed but this one returned, hence the treatment. The CIS has so far not reappeared.

I wish you all the best with whatever you do.

[Otstoia]

Thank you! All the best to you!

[McLabhran]

As a female, i had cis as well. It is very common. Not everyone gets it. I had BCG for about 2 years and developed it. I did some research and found food and drinks high in acid would cause major irritation to the bladder. I decided to change my diet and drank alkaline water only or natural spring water. This helped a great deal. As you know, BCG acts like Pacman chomping away at the cancer cells. Your bladder walls do become somewhat raw and like me became inflamed (cis). It will heal, but can take time from anywhere 6 months to year. Not easy.