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RC inevitable – NJ Dr. suggestions?
Hi, all. It’s been a while sine I checked in. My last cysto was in March and only 2 small tumors were removed. I went through 6 weeks of BCG during which time I had zero side effects. Today, 4 weeks after completing BCG, I had a follow up cysto….. Not good at all. Several large tumor patches (5+ cm) removed and doc is very concerned about how aggressive the cancer is. Since BCG had no effect and with such an aggressive reoccurrance in only 10 weeks, he’s recommending bladder removal.
I’ll have a consult with him next Wed and I’ll have a better idea as to his RC skills and experience with the different diversion options that may apply to me, but wanted to see if anyone in NJ has had an RC, been pleased with their doc, and can share their experiences with me?
He suggested I seek a second opinion at Memorial Sloan Kettering in NYC, but personally speaking, the thought of dealing with NYC only adds to my stress. I’d prefer to stay in NJ if possible.
Any help is appreciated. Thank you.
Joe
45YO male
11/30/2015 Left nephrectomy
2/17/2016 left ureterectomy
8/10/2016 cyctoprostatectomy w/ileal conduit diversion
Cancer free since!8 Replies-
Hello, all,
A few posts ago in this thread, I asked if anyone with an ileal conduit was willing to share their post surgery experience. I’ll answer my own request for the benefit of others!
In Aug, 2015, I underwent a cystoprostatectomy to cure stage 1 high grade cancer. It was my third surgery following the removal of my left kidney and a second surgery to remove the ureter. Life was dark and gloomy for a year.
I am now 6 months post surgery with an ileal conduit diversion and I couldn’t be more satisfied with my decision. The first several weeks where challenging in order to test the different appliance systems and get used to how best to change it. Once I settled on the appliance arrangement, I was able to refine the process of changing it weekly. Yes, I am getting 1 full week out of an appliance and that is only because I am choosing not to push it longer. I have gotten the time down to about 10 minutes before a shower to remove it and 5 minutes after to reinstall it. Showering without the appliance once per week is quite nice!
I chose the IC because it would be the quickest way for me to get back to normal and I knew I would struggle with the mental fortitude to train a neobladder. I do not have any regrets.
I am active at home and at work. I travel extensively for work. My wife has had to FedEx supplies to me! I have had no issues traveling by plane or with airport security for that matter.
I had my first round of scans in December and all were clear of cancer. I celebrated the results with my first tattoo…. A compass tattoo with the words Faith, Family, Courage, Hope at the NE, NW, SE, SW locations. My focus on these four things will guide my through the cancer journey.
It’s hard to keep spirits up when you get that news but I’m certainly a believer now that there is life without a bladder. Life for me is 6 months at the time for the next 5 years. And I’m going to be damn sure I keep my focus on the important stuff!
Thoughts and prayers to everyone. Thanks for all your support and guidance when I needed it most!
Joe
45YO male
11/30/2015 Left nephrectomy
2/17/2016 left ureterectomy
8/10/2016 cyctoprostatectomy w/ileal conduit diversion
Cancer free since!
Hi,
I’m facing the same thing. There’s some really good stuff on YouTube. You may have to wade through some film, but there is life after a urostomy.
Joe
I just wanted to congratulate you for doing your research.
The more information you have before surgery and the decision you make will certainly affect your happiness later on.
Any diversion has its high and low points. So if you make your own choice based on your own research, you will be able to handle the side effects that pop up.
Even though I had a neo, I don’t recommend it for everyone.I wish you the best of luck in every way possible. If you have ANYTHING you want to jaw about, this is the place.
Sincerely
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]
Hi Joe,
I agree with Sara Anne that a second opinion at Sloan is something you should seek. You don’t have to go there for the surgery, but at least hear what they have to say.
Good luck,
Anne
Joe,
Attached is a bookmark that I have saved in the event I also need an RC. It is a great summary of the 3 diversions. http://my.clevelandclinic.org/health/treatments_and_procedures/hic_Urinary_Reconstruction_and_Diversion
Most on this forum will also encourage you to use a surgeon with lots of experience. Once a month surgery is not near enough. As George says, more of an “assembly” line type. On a positive note, you are on your way to making this disappear!
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.
Hello again,
I had a second opinion at the Rutgers Cancer Institute of NJ and after some discussion of trying a round of mitomycin on me (since BCG was not effective) and discussion with my primary urologist, the Dr at RCI NJ concurs with the recommendation of RC.
General consensus is that BCG was not effective due to the use of Imuran to treat ulcerative colitis. Imuran is an immunosuppressive rendering immunotherapy useless.
RC scheduled for early August and will likely result in an ileal conduit diversion although both docs are split on their opinion between IC and neo bladder. I’m researching both right now.
There is a lot of information within this site that describe the initial trials and tribulations and life after a neo bladder (thanks, GKLINE!) but not much in the way of the same for an IC.
Is anyone with an IC willing to share their experiences with initial adjustment to, and general overview of life after IC diversion in terms of activity levels, clothing, etc?
I ask because I’m only 45 and work in an atmosphere that requires some lifting, bending, climbing ladders, indoor/outdoor work in all seasons, etc…. Power plant stuff. This may affect my decision but I’m also trying not to make a decision that might be good for me now and not so good as I get older. I’m leaning towards the IC primarily because of my colitis. While that’s been well managed for more than a dozen years….. Who knows what the future may bring.
Thanks so much to all that post here…. The knowledge gained from this forum is priceless.
Joe
45YO male
11/30/2015 Left nephrectomy
2/17/2016 left ureterectomy
8/10/2016 cyctoprostatectomy w/ileal conduit diversion
Cancer free since!
Thanks, Sara Anne. I’ll certainly have your advice in mind when I meet with my doc next week to discuss the plan. Tough days ahead….
45YO male
11/30/2015 Left nephrectomy
2/17/2016 left ureterectomy
8/10/2016 cyctoprostatectomy w/ileal conduit diversion
Cancer free since!
Joe, so sorry to hear of your recurrence. I know that this is NOT what you were hoping to hear!
Just to be ornery, I am going to second your doctor’s recommendation that you get a consult at Memorial Sloan Kettering. IT IS ONE OF THE TOP PLACES IN THE COUNTRY. Facing NYC may be daunting, but with what you are facing with bladder cancer that is nothing. Yours is NOT a simple case of an RC for recurrent bladder tumors; you have already lost one kidney and one ureter….only have one left. If ever there was a case where the absolutely best medical advice and care is needed, it is yours. You are still young and have the potential for a long and good life ahead of you. Protect it!!!
Wishing you the very best…
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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