Join now

Already a member? Sign in

Welcome to Inspire!

What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.

Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.

How - Joining Inspire is completely free and usually takes less than a minute. Join now!

corner corner corner

Removal of bladder and prostate

Dan-Accra
0 Recommendations

On 2 November, 2009 I go into Sibley Hospital for removal of my bladder and prostate. I know it is a major operation and will change my life in a big way but I am not too worried about it, leaving all in the hands of the surgeons and the hands of God. Perhaps I am kidding myself but I feel that I can get used to almost anything so long as I can be healhy, active and useful. I am 68 years old and try to some things that need doing.

Perhaps some of you could share your experiences about life after such surgery. Is my pouch going to be leaking when I don't want it to leak? Can I walk and jog with ease?

Dan

Explore topics in this discussion:

Exercise Cancer Surgery Falls Constipation Chemotherapy Pain Neobladder Bladder cancer

29 replies

roadrunner

Welcome Dan,

My name is Ginger,my husband was 66 at surgery,Cleveland Clinic,,,he has the bag...I can tell you what life is like now for us,2 years later,,I have walked with him from the first minute he was diagnosed,so I feel as a caregiver I can relate to you what it was like.....
Diagnosis sent us spinning,anxiety to the max, as he was stage 3,,,muscle invasive,after accepting the diagnosis and the surgery was goingto happen,,,we put our faith in God and had many who stood with us over this period of time...
Hospital stay usually 6 to 8 days,,,day one and two moreless in and out,but walking anyway,,,day 3 hopefully the bowels show signs of waking up,then food,and going home.
We found recovery to be slow,first 4 weeks,,,walks up and down the drive way,more and more everyday,a nice light diet,milkshakes,,,,chocolate to be exact,,,it gets alittle
tough as you expect so much more over these 4 weeks,but its the nature of the surgery to be slow recovery wise,,,no driving for 4 weeks,per our surgeon,,,and stoma nurses came twice a week,,,a great resource toma nurses,,they are wonderful,get them to come ,it will help your wife or caregiver as well.....at 8 weeks my husband went back to his part time job,just to get back into life situations and build confidence,,,,4 hours a day a first ,3 days a week,,,,4 months after surgery we went on a trip,,,,flew out to Vegas,to experience all the lights,, shows,,,,and great weather,today he swims, golfs,,,sexual funcion regained with help,so we are happy,cancer free for 2 years ,and the BAG...no problem...........
If you would like to speak with my husband,,,,,he is always a willing participant in a phone call,,it helps...

Biggest concerns after surgery,,,not going home to soon, bowels waking up and getting back to working properly,,,,always call and ask questons if you have a concernof your surgeon,,,,go slow,,,,for a proper recovery,,,and a safe one,pray for a clear path report..

and we'll pray with you too,
Ginger

roadrunner

Dan,
I see its Nov.2nd,,,wow,,,,,,,,soon,,,well,,,,just wondered,what stage are you,,,did you ask for a private room?,,make sure the stoma nurses are set up to come when you get home,,,,,master bath has bags now instead of fragrant candles,but thats okay,the candles return later,,,everything falls into place,being confident in your surgeon and his word helps,,,,getting the path report,,,,6 or 7 days after surgery,,,,,pain,you'll have a drip of morphine,,,no pain for you,,,just get walking when they tll you,its important,,,and the bag,its so much better than the alternative....and it flies Continental,,,,,no problem....
Ginger

EricAndre

Dan,

I had the same attitude before my operation and it proved to be the right one. Life after this RC is to me much better than before the RC (Radical Cystectomy)
at all level mental and physical. Not having that deadly bladder was probably the cause. But the end of treatments was also a welcome.
As far as recovery it took a few month (3) to be normal and few more to be perfect. There is annoyances at times but nothing serious. You learn as you go. Bring a supply of bags if you travel far (or close). If at first after surgery there are strange pain advise you staff but most go away naturally. Don't panic ever. I was told not to lift anything heavy, which is good for me since it provide a good excuse not to work to hard.
Seriously it is not as bad as it looks and even less bad as they say. There is many happy days ahead.
May God bless you as he blessed me.

EricAndre

nancynursez637

Great Attitude, Dan, good luck to you and be sure to let us know how you do. We are a wonderful rooting section and many prayers as well

Nancy N

joybob

dan, I see your surgery is coming up pretty soon. My husband had his r/c about 6 weeks ago. He is a little tired now, but moving around. Not back to tennis, but out and about. The surgery is the first step and after a few days in hospital you do start to feel better. It is hard no water or food for 3 or 4 days, but after that things get better faster. You will be fine. Hopefully you have someone close to stay overnite at hospital the first night. I stayed and then after that I was there from 8 an to 8 pm. I got him little things he needed, helped him walk, etc. The nurses are busy so anything I could do, I did. He was in hopsital 8 days and then we stayed at hotel another 10 days before flying home. Then there are the doctor visits. I don't know your stage and grade cancer so I can't comment on that. You will do fine. Many others here did it and you can do. Prayers from Orlando, Joycee

roadrunner

Joycee brings up a good point,,,have your loved one stay with you the first nite or 2,or 6 as in my case,,,just
couldn't leave,,,,found out one can be a big help with listening to orders and doing things to help out,,,
You do have a great outlook on surgery,,so you'll do well, but remember us,were want to know how it goes for you,,,and answer any questions you may have,,,
some prayers from Cleveland Ohio,
Ginger

lsh

Dan,

With your great attitude, you will do fine. And, we will be here to cheer you on. Please keep us posted on your progress as you recover.

Lynda

Moonerj

Hi Dan
Your mind is pointed in the right direction.
Everyone will be here to share your journey to being cancer free.
You will be in my thoughts and prayers for a successful surgery on the 2nd.
All the best,
Jack

jj803

Dan,

You have a great start. You have a treatment plan and faith in the plan. It's a fairly long road, but thankfully, the low times fade as time since surgery passes. I am 19 months out from RC and can say that recovery is a process. You just have to keep at it, walking and taking care of your diversion and as you gain more strength and energy continue to push yourself. Before too long you are back to having the physical ability to do almost anything that you could before, for some of us more than we did before. The advice above is good, walk, small frequent easily digested meals once eating is again possible. You are quite right we can adapt to whatever we need to and you will. That is not to say that there are not frustrating times to come, but they will pass and things will return to a new normal. Best wishes,

JJ

Dan-Accra

Thank you, Ginger and others for the good information and encouragement. I enjoyed and benefitted from reading the several responses. I'm not sure of the stage of the cancer but it is advanced and aggressive. The CT and bone scans were negative. I didn't ask for a private room. I'm on medicare, and perhaps having a room mate isn't bad. I was pleased to see that most of you rely on faith in God as an important part of recovery. The surgeon says that people who undergo my type of operation have a 60% chance of living five years. That doesn't sound very good. I am an active person who loves exercise, particularly turning over our compost heap, cutting the grass and walking/jogging. I will certainly resume the walking as soon as possible. I'm also a little concened about the many possibilities for infections, and other problems after the operation. Perhaps this is a main reason for the 60% figure. Ah well, I have probably done most of the useful and not so useful things that I have to do in life. But I sometimes think I could use a few more years to try a few more things.

Regards,
Dan

SwampFox

I am on the BCG regimen and hope that t will clear things up for me. I am clearly terrified of having my bladder and prostrate remove and will try any alternative if circumstances permit. I know the point is to survive and if the drastic operation is the only way then obviously I will do it.

I am new to this website but can see already how encouraging members are. Sometimes it feels like you are the only person going through this. I am happy I joined this website.

Peace and blessings to everyone.

roadrunner

Dan,
My husbands cancer was contained in his bladder, no re-occurrence since.......after the path report our surgeon said 95 percent sure he will never have a re-occurrence,,,so I wonder why the 60 percent. figure,,it seems odd they would mention that before the surgery,,its just my opinion, but I would not put a 5 year mark on it at all, how many turbts did you have? the stage is always given after the turbt,where they go in and remove what they can of the tumor, and stage it,,,also...give you type,as small cell,,,squamous cell,,,all have different aggressive levels.
Did you have a second opinion? Just wondered.

Ginger

Shiz

God's speed to you Dan. Prayers going up from Seattle.

Dan-Accra

Ginger - Actually, they removed a "large" tumor on Sept 18, along with smaller "masses". After the path the surgeon said that it was advanced, etc. I didn't have a second opinion. I'm not sure what you mean by a "turbt".

Dan

jj803

Dan,

I think the 60% figure is based on all comers and may be a mixture of stage 2 and 3 disease. That number can be refined after surgery. Like Ginger's husband, I was told 80-90% chance completely cured after surgery when it was found that I had only a small, single tumor with superficial muscle invasion. The other thing to remember is that this is overall survival and since bc is mainly a disease of older people, there is a tendency for them to have multiple other health issues which reduces the survival statistics. I don't know that anyone addressed what turbt is so transurethral resection of bladder tumor = removal of bladder tumor, usually in multiple pieces through a scope inserted into the bladder through the urethra. Although infection at surgery is a potential problem, this is not a common occurrence. Best wishes for your successful surgery and rapid, problem free recovery.

JJ

roadrunner

Dan,
To explain a little better,,,my husband had a turbt at the local hospital,overnite stay,,went in and removed the tumor,,,path said stage 3,,,,thats a tubt,the actual procedure to do this aurgery.
Second opinion,Cleveland Clinic,, he had another turbt, stage 3 confirmed, surgery 4 weeks later,it seems the Clinic likes to do there own turbts, just to have there own look see, see whats going on, and confirm things, cancer was not an aggressive in nature, did not go outside the bladder, if I am reading it correctly jj is saying 60 percent is across the board maybe until surgery and confirmation of the path.report...so we will pray for a good result with surgery,and a clear path, then you could be in the 95 percent group, with us, and we would be so happy to have you...ginger

Dan-Accra

Dear JJ & Ginger,

Thanks for the turbit and the related and useful information. Other than the BC, I am healthy and active. I hope to join the 95% group. I will keep you informed. Dan

Keith1

Hi Dan,
I was given 85%, that was Dec of 1995, when I was originally diagnosed with bladder cancer. In May of 2003 I had a RC and got a neobladder. It is probably best not to look at the odds. I had a uncle that was given a 6 month window when he was 45 years old. He passed away 2 1/2 weeks ago at 84 years old.
You have the right attitude, you will do well. Time and patience.
Keith

EG-NJMason

HI Dan,

I had a smear of cancer (couple types) on the lining of the bladder. They did a couple of TURBT's (That stands for Transuretheral Resection of the Bladder Tumor.. In English .. By way of the urethra [the penis] , they cut out a tumor from the inside of the bladder).. Crudely, but close to a good analogy, it's like a D&C that a woman might get. They scrape the inside of the bladder, possibly cauterize areas, and remove suspicious area.

After mine healed (about 6 weeks) they tried a chemotherapy.. Also done via the urethra (mitomycin). Sadly, the cancer returned BUT never invaded the liner or the muscle of the bladder. Push came to shove and I elected to have the bladder and prostate removed and replaced with a stoma - a urostomy. I wear an outside bag.

The results of the surgery were 100% cleared.. Because the cancer was contained I was put in the higher percentage of survival. if the cancer invades the muscle or the lymph then the opportunity is there for it to show up elsewhere - and that would lower the percentage of survival. I apologize if the is way more info than you wanted..but I always errored on the side of being better informed. When I was first diagnosed (2 years before the urostomy) I had already decided that I would have the urostomy at some point.. it was just a question of when.

Swamp fox.. Let me tell ya, there is NOTHING to be terrified of. I'm 59 .. very active..and this hasn't slowed me down at all. In fact, some things are better (there's one thats never going to improve but it's a small price to pay). I have nothing but good words for having had the surgery.

Fear not ! Besides, my alternative was urostomy or permanently horizontal. I took the bag over the box.

best
Eric

sunshine604

Welcome, Dan -
As you've discovered, there are lots of us with lots of BC experience, and no two of us have felt it the same way. So don't assume that because one person has a particular side effect or quick recovery from something, that you'll be the same. There are definite patterns though and some very definite dos and don'ts, which we'll be sure to fill you in on as you go along.
The survival rate is dependent on hundreds of things, so don't even think about it.

Hope you have a good sense of humor, because yes, the bag does leak occasionally, just to let you know it's still in charge. I've had mine for a year and have had maybe five leaks (after the first few weeks of finding the right bag for me - again everyone is different and there are many types of bags out there, so try them out and see which suits you.)

Keep us posted!
Eileen

Add to the discussion

Don't have an Inspire account? Join now!

Forgot password?

Related links from BCAN

Researchers are looking for bladder cancer survivors to complete a telephone survey. Click here for more information.

Newly diagnosed
Information for those newly diagnosed with bladder cancer from BCAN.

Bladder Cancer Basics for the Newly Diagnosed
Download or order a copy of BCAN's patient handbook "Bladder Cancer Basics for the Newly Diagnosed" free of charge.

Clinical trials
Get information about clinical trials and BCAN's Clinical Trials Matching Service which is offered at no charge.

Women and bladder cancer
Information about women and bladder cancer from BCAN.

BCAN's glossary (PDF)

BCAN's November Patient Forum in San Francisco
"Understanding Bladder Cancer: A BCAN Patient Forum"
San Francisco, CA
Saturday, November 7, 2009
9:30 am - 2:30 pm
The forum and lunch are free, but pre-registration is required at www.bcan.org or 888-901-BCAN

Presentations from BCAN's May 2009 Patient Forum
Presentations and slides from BCAN's most recent Patient Forum in Cleveland. Those diagnosed with non-muscle-invasive bladder cancer will be most interested in Dr. Jones' and Dr Pohar's presentations. People diagnosed with muscle-invasive bladder cancer will be most interested in Dr. Gong and Dr. Gilligan's presentations. Dr. Campbell talks about improving outcomes in bladder cancer patients, and Dr. Hansel talks about the importance of pathology in diagnosing, staging, and deciding on treatment for each patient.

Group leaders

You