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Some rookie questions: bladder cancer treatment

rickt99
Posts: 2
Joined: Nov 2017

Hi, 

Last week, I had the surgery (TURBT?), which apparently went well. Spent the night and was home the next day. More reecently, the doctor and pathologist informed me that my situation is as follows:

  • High-grade papillary urothelial carcinoma, invading muscularis propria.

Obviously, this diagnosis is potentially a big (and unexpected) deal, involiving surgeries, removal of stuff, and possibly chemo. I've been referred to another doctor--one who specializes in my condition. But it may be a a while before I'm able to meet him and get my 'practical' questions answered. So, weigh in if you are able to offer insight.

Question one: 

I am pretty busy with work, and I take my obligation to my employer seriously (but not as seriously as my health). With that in mind, I'd like to get your guidance on what to expect with regard to the AMOUNT of time that I'll be unavailable to work, based on having radical bladder surgery, chemo, or all of the above. Should I resign my position? Will I be able to continue working? How long will I need to be "out"?. How should I set my employer's expectations?

Question two: 

What if I do nothing: no surgery, no chemo, nothing. Obviously, I have an agressive and lousy type of bladder cancer. What would it look like if I simply refursed treatment? Note: Yes, I'm aware that this would be a terminal thing. But what about the interim? How long would I function? Etc?

Question three: 

I have a very limited suppport network, almost no family within 400 miles. I have friends who would help, but I don't want to rely on them or burden them. So, what am I looking at given a small support group, locally? Is that gonna be trouble? Do I need to be cared for a lot?

Again, those are rookie questions, Sorry if they've been asked and anwered elsewhere. Looking forward to your input.

rick

Lazy_Bones's picture
Lazy_Bones
Posts: 13
Joined: Jul 2015

1. Following surgery, depending on the type of diversion you select, your return-to-work time can vary. I had the Ileal Conduit (oustside pouch) and could to light work within a week. No matter the diversion, heavy lifting will be off the table forever. If you have robotic surgery vs open surgery, hernia chances are reduced. If the surgeon also uses the "SugarBaker" procedure, the risk is reduced even more. In any case, in the beginning, you will need more frequent bathroom breaks.

2. With no surgery, you might look into the new immunology drugs, either alone or in combination. They work wonders,MIGHT save your bladder, and have almost no side effects. 

3. You ask about support groups - that's really a local thing. Where do you live? 

rickt99
Posts: 2
Joined: Nov 2017

Thanks for that:

It's now a month or two later, and I am about ten days post-op: Radical Cystectomy w/ Ileal Conduit. Laproscopic Surgery. Still sore, and trying to get back to regularity/bowel functions. I didn't anticipate how much discomfort the 'gas' in my system would cause, following surgery. Much worse than the wound pain.

jrwixson
Posts: 1
Joined: Jan 2018

Rick, I had bladder cancer last year.  Like yours, mine was an agressive form called adnocenoma. This type occurrs in only about 5% of bladder cancer cases. The first thing that happens is you Urologist will take a biopsy in a procedure called a Turbet. Basically, this is putting an instrument through your uretra and scraping as much of the tumor out as he can get.  Since yours has invaded the walls of the bladder, like mine, he probably worn't get all of it. He may also introduce some sort of chemo drug into the bladder, however, I didn't get that. Once your lab results are returned, your doctor will decide on what course of action to take. Mine was Chemo, then surgery.  I only had one infusion of chemo and was told I couldn't have any more since my white blood cell cound was too low. So, my surgery was accellarated and scheduled for about 30 days later. Because it was during the Christmas holidays and the weather was bad I had it postponed until Jan.17th. The surgery I had was called a Radical Cysectomy in which the bladder, prostate and lymph nodes are totall removed and your urinary tract is rerouted in what is called an ileal conduit diversion

I would highly recommend you have the doctor take another biopsy before he does surgery to remove your bladder. I didn't and found out after the surgery that the cancer was dead and my bladder possibly could have been saved. Having you bladder removed means you either have a bag installed externally, or an artificial bladder built internally. The bag presents the fewest problems and stands a lesser chance of infection.  I only have one kidney, so, I wanted to avoid any infections. 

One other thing. I am a person of faith and I had many people praying for me. I truly believe in the power of prayer and I believe God answers those prayers. I've seen and experienced numerous miracles in my life and there is no doubt in my mind that prayer works. So, if you'd like I'll pray for you and add you to my prayer list.

Good luck in whichever route you choose. May God bless you and change all of your doubts into hope.  Have faith in Him that created you.  He knows your every need!

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