Decision Time â€“ Advice Needed

Decision Time â€“ Advice Needed

It is that time. The diagnosis has been confirmed and my husband needs to move forward to bladder removal surgery in the next 2 weeks. While they did not give us specific numbers, they have told us that it is a fast growing, muscle invasive, aggressive tumour which has already spread to the prostate (at least externally). They are also trying to confirm kidney function as one of his kidneys may have been irrevocably damaged and also have to come out.

We are trying to decide which procedure would be best for him, and I thought who better to ask than the people who live with this decision every day.

Here is some background:
ïƒ— My hubby is 61, generally healthy and a life long exerciser. Because he has always cared for his physique, he is particularly concerned how he will look after the surgery. Initially, the concept of the bag nearly put him over the edge!
ïƒ— He has always been involved in sports of some sort. Competitive squash as a youngster; competitive amateur golf now
ïƒ— Despite his good hand eye coordination in sports, he is a klutz at home (his words not mine). He struggles with simple things like changing light bulbs and putting in eye drops and gets really easily frustrated

Our decision tree:
Initially we thought the Neobladder was a no brainer as it would allow his body to remain apparently normal. Now, as we learn about some of the aspects which go along with the Neobladder (e.g. frequent/multi times/day catheterization, need to clear mucus, potential for incontinence, etc.), we are not so sure it is the right choice for him. He would like the Neobladder, but is feeling the bag may be an easier solution for him to manage.

How you can help:
If you could share why you are (or are not) happy with the diversion method you choose, as well as any challenges which you have with it. Even the manageable challenges (e.g. has it has changed the types of clothes you wear to hide the bag, etc.) would be helpful.

I want to make sure he has as much real info as I can get him to make the best decision for him. Who better to ask than people who live the life.

The encouragement you gave when I initially posted here re his prospects for golf post surgery have really helped to calm his angst and give him the belief that life can go on and still be great. We really appreciate all your input.

Thanks in advance,
Cynthia

By joybob
Posted November 2, 2009 at 5:40 pm
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cynthia, I think if you want the neobladder, it is going to depend on where the cancer is, ie. outside of bladder. Sometimes the docotors don't know til they get in there if they can do the neo. There are many here who have had it and love it. My husband chose the outside bag and no problems. We went in with t2 and afer surgery it was 3t it had gotten into the fatty tissue which means they want to do chemo n ow. So until the surgeon is in there he may have to change what you want. My husband is 73 very active tennis player, etc. He had his surgery about 7 weeks ago, still a little tired and not playing tennis yet. This week we talk to oncologist. That is his decision if he wants chemo for micro cells that might be there. Do you know at this time the grade anbd stage of cancer, that will have a bearing. My husband surgery was 4 hours at MD Anderson Houstion, one week in hospital and then visiting nurses at our home twice a week. He adjusted very well. If you have any questions you can e mail me as I don't post much as of late joybobbev@aol.com joycee

By roadrunner
Posted November 2, 2009 at 6:12 pm
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My husband choose the bag as well,,,he was 66 at surgery, THE BAG.....wanted nothing to do with it at first,,,his ego was very challenged,, big time,,,,well he visited his heart doctor,he said its the safest surgery, the bag,but if the neo means he can pee as usual it makes it so attractive,so we have the bag,he swims,golfs,,dives,,,and sex has returned, so were good, it just depends on how he wants to deal with it forever,,,some have great things to say about the neo,works well,,,continence is regained after awhile,
but you have to know the first few months diapers are included in the realm, until things, get going in the right direction,,,its all temporary,cancer is gone so thats the big deal,,,whatever your choice,,,its there for good,,,,,,,,,I just put up a discussion,The face of bladder cancer...its a interview my husband did for the news,,,,68,has the bag,and he still looks good to me.......ginger

By jj803
Posted November 2, 2009 at 6:23 pm
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Hi Cynthia,

For sure just appearance wise, neobladder is most normal external appearance. I think that in terms of activities that can be done after diversion there is probably no difference. All diversions have risks of complications and they are not really all that different in that respect. As Joycee noted, the urethral margin must not be involved for a neobladder to be possible and this is not known for sure until surgery. Prostatic urethral involvement may also be a contra-indication, thus you must have a back up plan if you choose neobladder as a first choice. I am 60, have had a neobladder for close to 20 months and am very pleased with the result. I have never been catheterized since the post op period ended (3-4 weeks after surgery the catheter came out). My only problems with mucus occurred during the healing period when cathed, once the catheter came out no blocking of urination by mucus has occurred. I have been incredibly fortunate as I have had no complications to date and have been continent since about 3 months after surgery. I am physically active, bike ride about 100 miles per week and weight lift at least once a week. I believe that we adapt to whatever diversion we choose. There is no doubt that the surgical construction of the ileal conduit (bag) is the simplest and has been in use for decades. I hope this answers some of your questions regarding the neobladder. I must also say that there seems to be variation in catheterization based on the surgical oncologist's preference as much as anything else. The biggest downside to the neobladder, and this would be true for the continent reservoir (Indiana pouch) as well, is the need to void on the clock, about every 4 hours even during the night, so for me an alarm clock is necessary. Best wishes,

JJ

By EG-NJMason
Posted November 2, 2009 at 7:04 pm
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HI Stony,

I;m kinda like your husband. 59. slim (not athletic build) but I am in good shape. I am very active - I do all the yard work, still climb around on ladders and do all those around the home things.

I had RC and prostate removed in may. As far as recovery, we are all different. I was out of the hospital in 5 days and at work in 6 (yea the 6th day after surgery - but I'm an at home desk jockey for a big company).

I had little choice so I got the bag. All I can say is: Bag, what bag ?? No one see it or has a clue that is it there.

I wear my shirts out OR tucked in. I can wear suits or jeans and a t-shirt.

I might add, I don't really care if people should see it. If I had a leg cast or an arm sling, well, you can't exactly hide them, OK, so this is my bladder.. it's not like I'm walking around with my fly open ! :) (again).

I understand very well his embarrassment but the bag is quite discreet, easy to maintain, and has some advantages. You already know, no cathing, no muscle training, no dribbling. There's also, not having to stop on a long drive for a potty break or racing to the bathroom in the middle of a good game !

Trust me, he can golf, swim, walk/run, do karate if he wants to ! It is not an inconvenience at all.

best of luck
Eric

By RickB
Posted November 2, 2009 at 9:16 pm
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Cynthia,

This is a repost, so my apologies to those have are regular participants in this forum.

People have similar (and high) satisfaction levels with each of the options. The criteria need to be ranked according to what is important to you (or your husband in this case), as you might make a different choice than me and be equally as happy.

Any of the available choices are fully functional. The decision should reflect your preferences of the various criteria, though sometimes your doctor will over-ride your decision based on information only available during surgery. Some of the major considerations should include:

- Your general health at time of surgery and your ability to handle major surgery and potential complications;
- Evidence of cancer or abnormalities in your urethra or in close proximity;
- Your desire for "normal" and your tolerance for "different" physical body image;
- Your desire for "normal" and your tolerance for "different" visual and audio experiences in public restrooms;
- Your desire for "normal" and your tolerance for "different" relative to bringing materials into restrooms;
- Your ability or willingness to handle sleep interruptions;
- Your ability or willingness to handle night-time accidents;
- Your ability or willingness to plan your time versus remembering to bring materials;
- Your ability or willingness to accept the risk based on your sex for long-term consequences that might result with a neobladder (example: self-catherization);
- [female, as I believe all options are the same for males] Your ability or willingness to accept changes in sexual function resulting from neobladder surgery (check with surgeon on current risks, as the surgery has evolved);
- Your access to a skilled surgeon with a history of successfully installing neobladders;
- Your ability or your insurance plan's ability to cover ongoing maintenance costs.

Again, the right choice for you might be the wrong choice for me. I have been quite happy with my neobladder.

Your husband would likely benefit from talking to some of us about the criteria above. I would be happy to speak with him, as will others.

Rick

By 15yrsurvivor
Posted November 2, 2009 at 9:48 pm
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Cynthia, I cannot give advice on this topic, but I just wanted to say it's very good to hear your husband is coming to terms with the reality of the situation!
There is still life after bladder cancer, and a good life indeed.

By Karego
Posted November 2, 2009 at 10:20 pm
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I'll weigh in for the Indiana Pouch (diversion similar to the neobladder, but with stoma on tummy or in navel). I am very happy with my diversion. I catherize to void. Since the stoma is on my tummy, it is simple and easy to do. No tactile feeling with the stoma, so no pain. After recovery, the normal interval time between voids is 3/4 hours. I no longer and running to the bathroom multiple times a day.
I believe surgeons are moving more toward the neobladder as a recommendation, but the Indiana Pouch comes in second when the urethra has cancer involvement. The ileal conduit (outer bag) has been and will continue to be a good choice too. Prior to the neobladders (internal pouches), it was THE surgery choice. Simple and efficient.
I am 5 years out from my surgery. My quality of life is excellent. No different than before. Or I should say, better than before because I am cancer free and have no symptomatic 'frequent urges' or pain when I void.
Whatever choice you make (and it should be your choice), you will adapt to your new 'normal'.
Karego

By Bob_M
Posted November 3, 2009 at 7:41 am
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I can’t add much more to what’s been said. I have a neo bladder since March 2009 and like JJ, I have had no issues. In fact I ran six miles about 15 weeks after surgery. I’m still active and feel pretty good. I believe if you go into this procedure in good physical condition you have very good odds for success. Neo, bag or pouch…at least the cancer is gone and you’re alive.

Bob

By Ardy
Posted November 3, 2009 at 8:43 am
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I had the neobladder 10 years ago when I was 67. everything went fine for over 10 years work out at the gym, work on the farm, etc. Just about anything I wanted to do. I was lucky I didn't have to have chemo or any maintenace drugs. I'm sure they have improved their surgery techniques more by now. I did have some leakage at times especially, if I lifted something heavy.
I have had trouble only recently and am having to cath some of the time. Good luck with your decsion and my prayers are with you.

By browns-crossing
Posted November 3, 2009 at 9:12 am
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I choose the neo bladder. was preformed Jan. 09. Had invasive cancer and had chemo first, then the surgery. So far the only issue I have had are urinary infections. Have had a few, and the last one was in the hospital for several days on anti biotics. Being a woman is different. I do have some stress leakage of urine at times, and at night. But mostly am happy with the decision I made. In the end I don't think it really matters, what matters is that they get all the cancer. Please just make sure if you have the neo bladder done, make sure it is by someone whom has done 100's of them. It makes a big differance in the outcome. It is a long surgery and technically difficult, so you want the best. The recovery time is longer, but most people have good outcomes, meaning, they void normally.
Best wishes,
Browns crossing

By Gnomic
Posted November 3, 2009 at 9:15 am
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Stony,

I'm 61 as well and had RC in April. Originally scheduled for a neobladder but had to get urostomy bag instead once they got in there. Just couldn't do the neo. Actually the bag has been terrific as a substitute. Can be annoying but you get used to it. Body image not a factor as nobody has a clue you have bag. Can even go shirtless as my scar is minimal. Some initial issues in the mens locker room at the golf club but you get an attitude fast. (Golf is not a problem. I even backpack) Have had to get larger trousers but that's mostly because I gained too much weight after surgery. Hopefully I'll get it all off again. No matter which replacement you choose it will work out. This whole thing is a big transition for all of us but it requires a positive attitude. You should be able to do almost everything you did prior to surgery. Due to some minor post surgical problems I'm only 85-90% there but I'll succeed and so will you. BILL

By Rarity2
Posted November 3, 2009 at 11:31 am
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Cynthia,
Although I am a woman and 53 I also had R/C. ( with total hysterectomy)

I did not have a choice as to which way to go, I got the bag, largely because I have a transplanted kidney and the risk of infection is much greater.

I was very worried about all the same issues that your husband is worried about. Mainly that I am not the most coordinated person around. I admit it was quite challenging at first. One thing that made a big difference for me was changing to the two part bag. I am in better control of the way it goes on at each replacement. (which is now about once a week, instead of every 2 to 3 days like I started out)

I was very concerned about body image also. It turns out that most of my pants still fit fine, I lost a little weight after the swelling went down.(had it to spare)

Like most new things, they can be scary at first but eventually when we get over the fear everything falls into place.

I wish him much good luck during surgery and hope he is able to get whichever solution he chooses.

Cherry

By sunshine604
Posted November 3, 2009 at 11:56 am
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I'm another bag lady - what I really like about it is that I can sleep through the night - what a treat after years of having to traipse to the loo. I golf, hike, and carry on as usual. The only problem I have (which you won't have) is trying to find slacks that aren't spandex and only come just above the hips - can't wait for the fashion to change back to non-stretch and waistlines where they should be instead of over the middle of the bag.

I think you'll adjust well to whatever diversion you choose.
Eileen

By JonC
Posted November 3, 2009 at 5:06 pm
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Cynthia:

I'm in the same boat as your husband is. I need to make the same decision by 11/16. I've been wearing a bag around for a couple days to determine how it would be...not bad at all. Although I find myself leaning toward the bag since it's so simple, the neo-bladder option still haunts me since after the 2-3 months of hell, everything would begin to be almost normal... I'm interested in the responses you receive. Jon

By DebbieMP
Posted November 3, 2009 at 7:07 pm
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Hi Cynthia;

Welcome to the group; you will find incredible support and honesty here.

My husband is soon to be 61, an avid golfer and exercises regularly. He went with the neobladder on August 7th and, if given the choice of diversions, would choose it again. He was back on the golf course within 6 weeks. He wears Depends at night as a precaution but has very little leakage. As far as the "mucus", its a normal part of the neobladder because its constructed from the intestine and for us, has been no big deal. The doctor will have your husband on a schedule to void because the sensation when needing to urinate isn't there...just a bit of pressure. My husband does not requires a catheter after having it removed on schedule a few weeks post-surgery. Looking at my husband, no one would guess he has a neobladder. He looks great and does what he wants. For us, its been a real blessing.

The key issues for you are: 1) Making sure you have a surgeon who is skilled in RC's and neobladders; 2) Have all your questions answered in advance. We had an entire checklist of questions...we feel so bad for people who just have general pieces of information from their doctors. Its shocking, really. Don't some of these doctors know the diagnosis is CANCER and questions need to be answered and all options weighed and considered?

No matter what you choose--and we hope you give serious consideration to the neo--its good to remember this is major surgery no matter what option you go with. So a period of rest and healing takes place regardless and that could be a big hurdle for your husband if he is used to regular physical activity.

Please keep us posted on our decision; we care!

Debbie

By WVDoll1962
Posted November 3, 2009 at 8:02 pm
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I can only give the results of my hubby's experience. Had RC with neobladder 10/08. As far as the neo it has been wonderful. He had only on instance of leaking and it was very small. Other than that he has done great and has never had to self-cath. He just has to make sure he goes before he feels pain in his back which tells him he is over full.

He has had numerous issues post-op such as severe pain in his legs which they could not explain but it has since gone away. He had a hernia which was repaired and unfortunately during surgery they put a whole in his new bladder which also had to be repaired. That was in May of this year. He has since developed another hernia which he says he doesn;t want repaired unless absolutely necessary.

This is a very tough decision either way and our prayers are with you and your hubby.

By Stony
Posted November 3, 2009 at 8:58 pm
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Thank you everyone. As always, your comments are really insightful and caring.

It sounds in general that everyone is happy with the diversion method they chose. It also sounds like the warnings re the Neobladder & need to self catheterize multiple times a day may be over stated, which is really good news.

We need to decide one way or the other soon (basically at the same time as Jon). Thanks for all the input.

Cynthia

By Annasvenska
Posted November 4, 2009 at 8:07 am
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Hi Cynthia

I am a 42 year old woman and I recieved a neo last year. I am doing evrything I did before I was diagnosed with bladder cancer and I don't self cath. I have been fully continent from almost the start except for when I have been out for longer runs. The combination with a full bladder and the pounding of the running causes me to leak a little.
The recovery was a bit hard though however after four weeks I really started to recover well and I started some light jogging six weeks post op.
After 7 days of bedrest a healthy and fit individual will loose 75% of their strength so expect to decline a bit.
That is significant and explains why it can take some time for people whom were a bit deconditioned prior to surgery to recover after neo surgery.

Good luck and welcome!!

Anna

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