New Here . . .

Hi again Duke,

I was reading some of your past posts and my husband is opting for neo bladder surgery. Can you give me some information about how it all works and basically how long it took you to heal, any special problems, etc.?

I have so many questions, but I don't want to bombard you with them all at once. I think if you can give me some basic information it will answer some of the concerns I have.

Thanks so much,

Best regards, Rayn

L,

Here is a link to something I posted about a year ago.
To the folks who say they will never get a cystectomy

This is a link to the discussion thread from that post: Discussion thread .

When people choose not to get the surgery when it is clearly required, I kind of consider it to be 'suicide by cancer'. Of course, that's just my opinion. CIS (that's the acronym for Carcinoma in situ)is VERY aggressive.

I certainly haven't heard about too many dead people that enjoy a healthy sex life, so I'm not sure about his argument there.

There are plenty of folks here who have had their bladders removed that he can ask questions of. Just because he 'thinks' something may be a certain way, doesn't necessarily mean it will be. Those of us who have had the surgery would be happy to speak with him or answer questions he may want to post here. He can be anonymous here so nobody will know who he is and we're certainly not going to tell anyone.

What he needs is accurate information so he replace fear of the unknown with facts.

It is important that he moves fast. Once the CIS spreads, the chances of cure are greatly reduced.

Maybe you can share some of the information from what you read in the above links. I hope that it helps him see that quality of life is just fine after getting the surgery and that he will change his mind.

Mike

Hello Duke, I more then appreciate you're being straight forward. I need that more then anything else. Your information is so encouraging and I'm so relieved knowing that other men who have experienced this have a life after surgery. I think that's what my husband needs to know as well in order to ease his stress. You and Cynthia have sure lowered mine.

He did take pain killers with this last surgery and had bouts with constipation and then the big "D" from taking laxatives. He wore a cath for a week because there was scar tissue in his urethra that need to be removed because it was blocking him from urinating properly. He got it out today and is still bleeding some.

We bought some depends and I think that really pushed his Dignity Button. He's always been healthy, so all this is new to him. It isn't to me because I've battled more then one disease in my lifetime, took care of my father when he had Liver cancer and my mother when she was having heart problems.

I keep reassuring him that all this is temporary and he will get well and doing a Radical Cystectomy will save his life and the doctors are fairly confident he'll be able to have normal sex life (for his age . . . he's 68).

This man is my world. He means everything to me. I will do anything to help ease his emotional and physical pain. You've just given me a gift and I appreciate it.

Best regards, LMH

Hi Cynthia,

Many thanks for your input. Yes, we've had second opinions. We've pretty much run the gauntlet of doctors and all have said the same thing . . . the bladder needs to be removed as well as the prostate.

I think you are so right in that without enough information, the thought of this kind of surgery looks like the worst hell possible.

It is good to hear that life does go on. My husband is 68 and is otherwise in excellent health. We have a wonderfully full and happy life. He has an enormous amount of energy and he thinks this surgery means the end of all of our activities, social and sexual, even though the doctors have told him that theres an excellent chance of being able to have sex and go on with our lives after some months of healing.

Yes, he has situ.

I will continue to encourage him to talk to his male friends. We know a few who have had bladder removal and they seem to be doing just fine. He's always been reluctant to share this with anyone because he doesn't want to be seen as "weak". I think he is the most courageous man I've ever known.

I will do anything to make this time for him more comfortable and less fearful, but I need to have information in order to do this.

I'm so glad I'm here.

Best regards, LMH

LMH; I will try to be as open and honest here as i can be. Not to good at being open about some of this myself, but for your husbands good i'll give it my best shot. My back ground; I had a couple major cancers twenty and ten yrs apart before my bladder cancer started two years ago. And i was a wimp when it came to Drs. and the whole med. system. I'm a 64 yr. old male. Married to a lady that could support me through hell and back, and has. First year of bladder cancer was spent testing, bcg more testing
etc. Dr.recommended surgery nov. 2009, had surgery dec. 2009. Even tho i had major surgery and cancer two time before, I was scared to death. Talking to former r/c recipients and reading on this site was what made up my mind. that and the Dr. telling me, I didn't want to die a slow death from bladder cancer! I also had much better odds of surviving bladder cancer then i had with my other cancers. Did i worry about the sex problem; yes' but if i died from not having the r/c i decided i wasn't going to be having much sex that way either! Was i worried about incontinence? Some but not to much. I had spent a lot of time in the whole medical thing already, so there were not many things left that i could be embarrassed about anyway. The surgery? About ten days of hell, but if you can stand taking pain killers ( i can't) it will be much easier. Then home and healing for a few months. Very little incontinence, mostly at night, no big deal! I have to this point never had to cath, something i was worried about. Here i am at one year; have no incontinence, although i still ware a pad sometimes just in case!
Physically? I can still do everything i did before, maybe a little slower! But hey I'm getting old anyway, of course I'm going to be slowing down. Sexually? I was having sex less then six months out, at a year; sex with no meds, as good or better then before. Hope i am not to blunt here, but if it will save someones life, what the heck! I have a thread on here from pre-
surgery to today, if you or your husband care to read it. There
are a lot of stories on here, some with not as good as results as mine, some better. Knownledge is your best friend, jump in.
Sorry about the long post, but this whole thing is doable and i want people to know that!!
Wishing you the best. Duke