Quality of Life after Radical Cystectomy

I've just been diagnosed with Stage 2 muscle invasive grade 3 bladder cancer. I met with the urologist at Georgetown University yesterday and have a radical cystectomy scheduled for Thursday September 27th.
The surgeon gave me three options:

1) Ileal Conduit
2) Indiana Pouch
3) Neo-Bladder

Has anyone had these procedures done? What are the pros and cons of each. With time being of the essence here, I'm posting my cell phone number. Please call me or respond to this post if you have experienced a radical cystectomy. 301-693-7914

Thanks,

Sandy Hoe

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58 replies. Join the discussion

I faced the same decision a month ago. I am very active, athletic and otherwise in excellent health. My doctor is nationally renown in this field. He presented us with 3 choices; Ileal Conduit, Indiana Pouch, or Neo Bladder.

http://my.clevelandclinic.org/services/urinary_reconstruction_and_diversion /hic_urinary_reconstruction_and_diversion.aspx

Based on our conversations with him and his recommendations, my wife and I elected to go with the ileal conduit. Regardless of which urinary diversion they choose, in the end, most people are happy with their choice.

I am going in for surgery tomorrow, Sept 21.

Mariano

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I had RC & neo one year ago & am happy with my choice.

Pros - closest to previous appearance & function.

Cons - longer surgery & recovery time, patience & time required to 'train' neo, with likelihood of initial incontinence possibly persisting to some degree for months or longer, especially at night. Have to get up at night to empty.

Possibility of needing to self catheterise to void (more likely for females than males). I do have to self cath, but don't regard this as a problem.

Good luck making your choice & hope all goes well.

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I was forty seven when I had the surgery....Ileal conduit with my RC.... five years ago today. This was my only choice, as my cancer was stage 3. I wish you all the best.
Linda

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Shoe...I am sorry that you have to have this surgery but life after can be very, very good. I had an RC two years ago with an ileal conduit and my life is just about the same as before surgery. I am very active...runner, cyclist, hiker, traveler...and have no issues at all with my pouch. Surgery and revoery tend to be shorter with an ileal conduit.

I do have a question for you, though. Have you had a second opinion or considered going to Johns Hopkins for an evaluation? Johns Hopkins it rated at about the top for bladder cancer. When it comes to bladder cancer surgery you want the very best, most expert and experienced doctors and their teams that you can find. You also don't mention whether you have had any chemo.

I wish you good luck with your decision making, surgery and recovery.

Pat

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Shoe7508,

Satisfaction levels are similar with all of the diversions, and the choice is a personal one based on how you weight the criteria.
You might choose one and I another. Doctor does have a say in the choice, as there may be factors that prevent use of the neobladder, some of which may only be discovered during surgery. You will be marked for the ileal conduit regardless to ensure that the stoma is in the right place for you.

These posts may be helpful:

http://www.inspire.com/groups/bladder-cancer-advocacy-network/discussion/ne obladder-versus-ileal-conduit-indiana-pouch/

http://www.inspire.com/groups/bladder-cancer-advocacy-network/discussion/an yone-who-would-change-their-diversion/

I have a comparison chart that I can send you (Friend me and then send me your email address in a private message).

The right care is critical for this disease. Second opinions are helpful. If you choose a neobladder, make sure that you have selected an experienced surgeon.

BCAN now has patient tips that will help you on this topic. Go to this website:

http://www.bcan.org/facing-bladder-cancer/toolkit/

This is a complex surgery. Neo recovery time will be longer. Expect 2 to 6 months to get back to your "normal" self. Quality of life can be quite good, but there are adjustments.


Rick

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I had my RC and IP 2 years ago and I'm feeling just fine; on my way to the NC picnic right now.

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Thanks for the quick response and good luck tomorrow.

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Pat: Thank you for sharing your experience. Today we had a consult at Johns Hopkins and generally received the same opinion. Then this evening attended a support group meeting where a urologist from the National Cancer Institute spoke about the different diversion techniques and the actual surgery. Met a gentleman at the meeting with the ileal conduit and he said he was doing just fine with it which made me feel much better. Big question has been whether to do chemo before surgery. General opinion for me seems to be no. Thank you again for sharing.

Sandy

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Had Neo in 08 at age 57.I just wanted to be as normal as possible.i've had some issues along the way but feel normal and do anything I want to do now.Headed for Maggie Valley within the next hour.I would go to major Cancer Center if I had it to do over.

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Great speaking with you. If I can be of any assistance or answer any further questions, don't hesitate to ask.

Please see my former post of Sept 2nd entitled:
IMPORTANT RECOVERY ADVICE FOR YOUR UPCOMING RC or RCp

If you want some laughs, search some of my other past posts. Some say that I'm borderline insane but I have a prescription for it so it isn't a problem "yet." Insanity is, as they say, "all in the mind." Hang tough. It isn't nearly as bad as you imagine in the beginning. My advice and personal philosophy was and still is to simply decide to say, "SCREW THE MONSTER." Then go forward and beat it. "Never give up the ship," a guy who was blown to pieces and died in his ship once said.

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Had my RC 16 months ago. My doctor, from Anderson, doesn't like to weaken patients with chemo prior to surgery. I had the surgery, was able to begin chemo 5 weeks later, had four months of chemo, and my most recent CT shows no cancer anywhere. I feel very blessed. I believe the fact that I didn't have chemo before the surgery made me stronger to do the chemo after, and allowed me to do it sooner. I have the IC and it works great. My wife says I have more energy than I have had in years. I really feel great! Will be praying for you during your surgery and recovery.

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I had the IC 1 1/2 years ago - no choice because of my age (70+) I played golf this AM, tennis tomorrow, am planning a trip to Souh Africa this fall. With the right, positive attitude, and a good surgeon, anything is possible.

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Hi Sandy:

Well, I do believe you found the right website for answers pertaining to bladder cancer. Lot's of experience represented here, with plenty of good people willing to share. I'm confident you will make the right decision for you. As others have said before me, for some odd reason just about everyone seems to be satisfied with the type of conversion they choose. Nothing like batting a thousand huh?!!

I wish you well.

Take care and God bless,
C U,
Bill

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Best of luck with your RC and whichever urinary diversion you choose. My 73-year old husband has a 4+ month old neobladder. It does take longer to "train" than the other options, but he is pleased with his recovery. He is cycling about 120 miles a week and lives a pretty normal life. That said, everyone generally ends up satisfied with their choice.

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Sandy --- I had RC done by a young doctor at Georgetown U. Hospital in November, 2009. Have an ileal conduit with pouch. No chemo before or after. It takes a few months to recover. It has worked great. Some things I have learned - the surgeon and MDs are not very particular about the follow-up details, the ostomy nurses were very good and experienced and personal research and this site are important. Because lymph glands were removed, my right leg began to swell (lymphedema) while I was still in the hospital, and stayed that way until a couple of months ago. MDs told me to wear support stockings, elevate the leg, take water pills and use less salt. None of these did much good. Then a German lady said I should massage the leg as they do in her country. I did and it worked wonders. I went to the Adventist outpatient rehab and got professional guidance on how to do massage properly. For me life has been very active and very good after surgery.

Dan

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I had stage 3 high grade cancer and chose the neo, I did need a bladder sling for it and do self Cather but I'm happy with the results that was in 2004 and I'm living an exceptionally busy lifestyle working 40 + hours, taking care of grandchildren. Whatever choice you make they have come a very long way with the different choices and this site will be of great support for you. All the best don't get impatient take one day at a time.
Mariann

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Good luck on your surgery Shoe - I will be having my RC soon. Seeing my doctor tuesday to set it up. I will be anxiousto hear how you make out. Any advice is welcome.

Cathy

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It good to hear the experience with others who have had the same procedure. I had a 53 old male who had an RC on Aug1. It took 13 hours...ugh! 8 weeks into recovery, I am very happy with the progess but do experience the night incontinence and sometime during the day if I don't time void frequently.....my abodmin still feels weird but I'm back to normal activity including exercise and work.

I'm just wondering if the incontinence will last forever or if it will get better with time...do Kegel exercises help?

Thanks for sharing your experience.

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YOU HAVE MORE THAN 3 alternatives !!!!!!

the information one gets on this blog is limited by the personal experiences of the folks who are dispensing the info.
as anyone reading this blog can see, the information, experiences and knowledge of those freely dispensing advice is neither cutting edge nor in many instances accurate. the vast majority of folks chatting on this and other blogs have only been exposed to and have bought into a single treatment modality, RC (radical cystectomy) namely a radical,
surgery-first-and-and-ask-questions later approach. hearing these folks chat about what is or isn't cutting edge treatment for bladder cancer is akin to getting advice from a farrier for problems with a tubeless tire. most of what you read on this blog is old information, is not always timely and certainly is not always accurate. what used to be "standard of care" is no longer that. the folks who persist in preaching that gospel are giving you the same information they were scared into accepting by the vast majority of health care professionals who have not yet caught up to new research and updated standards of care. this fraternity is practicing the most conservative, and for the most part, least informed by research approaches to addressing bladder cancer. remember the vast majority of oncologists who a mere 15 years ago had to be dragged kicking and screaming from radical mastectomies into the 20th century and the now common practice of lumpectomies and other less radical interventions. common sense tells one that radical surgical interventions should be the last not the first option when dealing with any disease. remember ocham's razor.....
the simplest solutions first.

ten months ago, i was diagnosed with t 2, muscle invasive, aggressive bladder cancer. the tumor was removed via a turb.
had i not researched the topic, i could easily have been "persuaded" by renown individuals at world class institutions to have begun my treatment with (RC) radical surgery. the first surgeon i was referred to wanted to carve me up like a turkey the day before i arrived in his office. instead, i sought a second and third opinion and learned about bladder preservation protocols by doing reasearch on my own on the topic of bladder cancer. when i found i was a candidate, i opted to accept bladder preservation treatment at mass general hospital, staffed by the harvard medical school.

thus far, treatment has progressed unremarkably, and i am, to date, cancer free. though the term "cancer free" is not
generally used until five years have elapsed without a return of cancer. should the day come when a cancer returns and a RC is necessary, at least i can say all attempts were made to protect the integrity of my body before proceeding to radical interventions. this is an approach that is not the norm in this country but is far more prevalent in canada and europe.

do your research and choose wisely. be verrrry cautious when accepting "advice" from folks on this blog.
remember, we folks are not experts, we are merely presenting the results of personal experiences. and those experiences are in great measure, determined and limited by what we have been spoon fed by medical personnel who are committed to a surgery first---not last___ approach toward dealing with bladder caner. in many cases, these medical personnel and their patient acolytes have not caught up to the cutting edge research. CHOOSE WISELY AFTER you have done your own research.

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psycny:

Be begin with, I believe the manner in which you represented the views of this forum was quite condescending to say the least. I didn't consider myself a lost, uneducated sheep willing to take advice from the first radical medical quack that would see me so they could make a few extra bucks. No, I didn't at all. I went to three urologists, and after many blood tests, procedures, scans, etc. (as well as investigative work on my own), it seemed to be a unanimous decision that my bladder was radically diseased and needed to come out and come out quickly.

Perhaps you don't know how aggressive bladder cancer can be. Maybe you should be some research yourself and perhaps you just may realize that the 'killer' inside has one job to do and that is to kill, unless removed and removed quickly, that's exactly what will happen.

It's one thing to try to introduce a method of treatment that you think would be an alternative for someone to consider, but to make and all and all attach against people like myself who are going through a serious illnesses of which they have lost friends and relatives as well, is not only quite insensitive, but also what I would unequivocally consider as being rude and possibly criminal.

This forum is about giving suggestions as per your own personal experiences, as well as given info particular to new treatments for bladder cancer. But, with that said, there is a way to do things. I would suggest if your in the mood to embarrass someone or to try to belittle someone, that you find another forum as this site is for helping people, not to use it as a political springboard per your point of view.

Hopefully you will reconsider your approach and maybe, just maybe, your ideals will be given consideration by some who are open to new thoughts along this line.

In any case, needless to say, I thought your post was as I said, insensitive and argumentative.

I am quite content with my RC and have just passed my post op 2 year mark. And, happy with my post RC life.

C U,
Bill

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