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any 20’s males out there with neobladder?
My 25 year old son is facing radical cystectomy from bladder cancer, hopefully with neobladder, in the next month. Just trying to find any information at all on post op course, how long did recovery take you, have you gone back to work, and if so, how long were you out – weeks? months? When were you able to go out and do things again. Just read a post today where someone was 17 weeks postop and just going on their first outing. Is that typical? Whatever helpful hints, suggestions, questions to ask the doctor – anything you can suggest, share or tell us. We have been reading tons on the internet about the mechanics of how it happens, but more want the practical, personal views. What to be careful of, what to do or not to do. Most everything we have read talks about people much older. We would like to know how younger people effected by this handle the day to day after surgery and what to expect. I am not wording this right. Please don’t take offense if you are not a 20 something. Your insights and help will be greatly appreciated also. Thank you
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15 Replies
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the only 20 something males i’ve seen with bladder cancer were in the military…some at camp LeJeune where the water was found to be contaminated. Here is a paper on younger males with bladder cancer.
http://www.medscape.com/viewarticle/405400_2
pat -
He should certainly recover WAAAAYYYY faster than us. Still won’t be a walk in the park though. It’s a big surgery and can take 6 or more hours.
You haven’t alienated me and expect probably no one else here by asking what you did. I don’t know of too many people who showed up to this site with lots of information/knowledge about bladder cancer. How are you supposed to know that it is extremely rare for someone so young to get this? We understand. :)
We will all be pulling for him!
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Thank you all for your responses, every little bit of information is helpful as we are finding there aren’t alot of 20’s males out there who have been thru this.
I hope by asking for 20’s males, I haven’t alienated anyone. I figured recovery would be quite different for someone so young, and maybe, it’s just that since he is so young and otherwise very healthy, his recovery will be shorter.
I appreciate your patience and good wishes. We are terrified at the changes this might bring, but trying to stay really positive and keep in mind that, hopefully, after the RC, the cancer will be GONE!
Dear RysMomKB,
I can’t emagine what thoughts you son must be going through.
I am 50 and felt to young to have the RC but Cancer knows no age limit.
My surgery was 12 hrs and robotic assisted with disection. I had a catheter and a folly drain plug after surgery. Was in hospital for 6.5 days. Up and walking day after surgury, short wlks down hallway 7 to 10 min. per walk about 6 times a day. Very improtant to walk as this prevents blood clots post surgery.
Catheter stayed in for 4 weeks at home.
Returned to work after 3.5 months recovery at home.
Pads, diapers, and matress pad are musts.He will have to go slow with returning to full activity and will most likely have leakage. This will be less and gradually return to normal in 6 months provided he learns how to controll his muscles.
Have him practice the kikle all the time… it will help later.
As pointed out by others, they will not know if the RC will be possible until they are in surgery, so stay positive and keep praying.
And he will have a big scar, so the six pack abs may look like a 12 pack for the first year. :)
Good luck, my prayes are with your son and your family.
PS… I had stage3 high grade very agressive cancer.
Here is a link to pelvic floor exercises posted previously by Humpy: http://medicalcenter.osu.edu/PatientEd/Materials/PDFDocs/exer-reh/physical/IncontinenceExerProg.pdf.
He can actually start these exercises now and it will help him regain continence sooner.
When he gets the catheter out, there are what some of us call “man pads” that he can get as well. They help for daytime leakage. Here’s a link to one kind but there are lots of brands: http://www.walmart.com/ip/Bladder-Control-Pads-Extra-Plus-16-bg-144-cs/9894123
When home, a mattress protector of some sort is helpful.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Mom,
Top surgeon is very important for RC.
He should chew gum (don ‘t swallow) as soon as he can after surgery. The gum chewing action can quicken waking of the intestines. The intestines shut down with this type of surgery and waking them up is one key to recovery and getting out of the hospital.He should walk at least three times a day. First day, just walking in place next to the bed is ok. Then up the hall and back. Someone should be with him to walk.
Also, first day can be deceiving. The pain meds may make it seem like things are pretty darn good but then the pain can creep up on one. He should use the pain meds but not expect to be completely pain free. Keep pain under control but not gone. The reason is that the pain meds slow the waking of the intestines.
Check with his surgeon about getting an epidural for the surgery. People who do this tend to have shorter recovery times in terms of intestines waking up.
He (or somebody) is going to need to flush the Foley catheter that will be in when he wakes up. The intestine used to make the neobladder will produce mucous and the mucous can clog the catheter so it’s important to flush the mucous out regularly. They will tell you how often at the hospital.
He’s going to have all sorts of tubes and drains so he shouldn’t be surprised by that.
They don’t know for sure if a neobladder is possible until they are in there. Any involvement by the urethra may rule that out.
He should be very careful about lifting. Incisional hernias are common and it is very easy to lift to much too soon. Many of us here have had problems with (myself included).
He will be given exercises (Kegel’s, at minimum) to strengthen the pelvic floor muscles. Those are the muscles that are key to continence. Given that he’s younger, he may be able to achieve continence sooner than the norm because his pelvic floor muscles are likely stronger than a 40’s or older male. Typical is about a month after getting the Foley catheter out. He will go home with the Foley still in and need to maintain that flushing schedule they give him
The neobladder will need to be stretched SLOWLY over time. He will have a schedule of how long to try to hold it between going to the bathroom to allow it stretch. The size of the neo will only be about 40cc or so in the beginning and the eventual size 400-500cc.
Hope this helps.
Mike
There are mixed reviews on the harvesting of sperm if chemo is required. Some chemo treatments can cause permanent damage, some can cause temporary or long term reduction in count. It all depends so the bank is probably a safer bet with the harvesting afterward as a backup.
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Thank you Bill and Mike for your replies. We have the big meeting with his doc this coming friday and a list of questions to ask. We have a really great cancer doc who has been guiding us, but is not treating my son. He’s just in an advisory role.
My son has two small children, but we have discussed the sperm bank issue, and diapers so far. We are really lucky to have a great relationship and can talk about most anything. Granted, I am mom, so I’m sure there are limits at some point. I appreciate the timelines; just to have the most basic idea of what to expect. He is very young, and otherwise quite healthy and strong, so hopefully, that will hasten his recovery.
He’s really looking forward to just getting the cancer OUT and gone. As has been explained to us, as long as there is a “host” the bladder cancer will continue to return. It came back this time, bigger and faster, and since last time it was 150 grams, his doctor says the tumor cannot be safely removed; it takes up the entire bladder at this point. Too much risk of tumor spillage – so RC is the only real option. We appreciate any helpful hints, tips for care after the procedure when he’s home and just general advise from those of you who have been there.
Thnak you!
RysMomKB,
On the wanting children side of things that Mike talks about, my doctor gave me a brochure for any future thoughts as this was something my wife asked about. Along with making a deposit, they can harvest any time after the surgery. It looks and sounds brutal, but I guess it works and only takes a few minutes for the procedure. Don’t overlook the subject when talking to the doctors.
Good luck with the surgery, and if you guys have any questions here, just ask away!
Bill
5.24.10 Final staging T2G3 7.28.10 Started Gemcitabine, Cisplatin neoadjunctive chemotherapy
11.2.10 RC with NEO 11.18.11 First year CT shows possible liver tumor
12.8.11 Confirmation of TCC BC mets to the liver 6.27.12 Final round of Dose Dense MVAC
7.26.12 Final scans showed no tumor or no metabolic response10.18.12 Wife leaves, now a single dad
10.31.12 New scans show metastic return to liver 2.4.13 New scans for treatment, no other sites found
2.20.13 New chemo regiment started, will run at least 12 weeks
Mom,
You aren’t going to find a lot of 20 somethings here with an RC because there aren’t that many 20 somethings that get bladder cancer.
Only 25! That REALLY sucks. I guess it sucks at any age but 25 sure is young for this disease.
So, recovery time varies greatly with this surgery. A 25 year old is certainly going to recover faster than most just because of his age. I was out walking the day I got home from the hospital. Not far, but I was outside. I was working from home (have laptop, will work) in a week. My doctor had me on travel restrictions until mid-December (my surgery was 8th of Oct) and I had complications which caused me to have a 12 day hospital stay.
Average time in the hospital is is around 5-7 days but it could be less for him. My grandson (9) just got his appendix out a couple weeks ago and he was sent home in less than 24 hours!! Took me 3 days when I was 15 and got mine out!
Getting his bladder out now offers the best chance for a long and healthy life. Bladder cancer has a very high recurrence rate and getting rid of the bladder before it can get elsewhere is the way to go.
The nerve sparing surgery for the prostate removal is very important. Make sure the doc is A+ in doing that part. The prostate is removed when they take the bladder and it controls erections. Not sure if he has kids or wants them in the future, but he may need to make a deposit at a sperm bank because post surgery there will be no ejaculate. Not sure if the doctors have already talked to him about that but if not, he should ask. Rather than me explaining all this to his mom, it would be better if chats with his doctor about what prostate removal means.
Hope all goes will with the surgery!
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Hello RysMomKB,
I’m not 50 yet, but I can tell how long things took and what my doctor said to plan on time wise. I was in the hospital for six and a half days, she said seven to ten days. Stomach and bowels took about six weeks to get back up to speed, told six to ten weeks. Lots of gum and walking really speeds up the process.
I was told about three months for recovery and able to return to work, sooner if there was no heavy lifting or standing for long periods. For radical cystectomy, incontinence issues will be how well your son follows through with retaining his pelvic muscles with kegel exercises and breaking in the new bladder. Plan on pads and diapers for maybe a month in the beginning.
There are so many questions so don’t be afraid to ask and take notes. If his cancer has been caught early, things should go pretty well for a long time. Just be sure to get a surgeon that has done a lot of RC’s, the more experience, the better the outcome.
Bill
5.24.10 Final staging T2G3 7.28.10 Started Gemcitabine, Cisplatin neoadjunctive chemotherapy
11.2.10 RC with NEO 11.18.11 First year CT shows possible liver tumor
12.8.11 Confirmation of TCC BC mets to the liver 6.27.12 Final round of Dose Dense MVAC
7.26.12 Final scans showed no tumor or no metabolic response10.18.12 Wife leaves, now a single dad
10.31.12 New scans show metastic return to liver 2.4.13 New scans for treatment, no other sites found
2.20.13 New chemo regiment started, will run at least 12 weeks
Thank you! I will check out that section!
Thank you for taking the time to respond. Surgery has been scheduled for June 2, and we are very lucky to have a urologic oncologist at UCSD here in San Diego working with us as well as a second opinion guy at USC. Next appointment is May 6th to go over the surgery, options, potential outcomes and all the other info they think he will need for a great recovery.
My son is otherwise, a very healthy, strong young man, so we are hopefuly that once the cancer is gone, he will go on to live a long full life and be able to enjoy being cancer free.
It’s good to hear from others who have had the procedure and are going on with their lives!
RysmomKB, Sorry your son and your family are having to go through these hard times. I know you were looking for help and info from a twenty something, but being you have gotten few responses i will give my thoughts and hope they help a little. As for the age thing, i am 64 and had my neo for about eighteen months. I was out trying to walk soon after i got home. It really takes about six weeks to start to feel like life is ok again. I found a foam wedge went laying down really helps on getting up and down. At eighteen months there is nothing i can’t do now that i did before. To this point the neo was the best choice i could have made. For long term like your son i would think it the best, but would ask dr. about long term results and what complications there might be over time. The most important issue right now is for your son to get the BEST POSSIBLE DOCTOR HE CAN GET!!! If his surgery is done as well as mine, I thing he can live a normal life. I was lucky that my surgery went so great. I DO NOT WANT YOUR SON AT 25 years old TO DEPEND ON LUCK. Pat on this site can give you the info for the best doctors.
Wishing you and your son the best.
Duke
Hi RysMomKB – Glad you found us, but sorry that you and he are going thru this. You may want to check out the Men and Bladder Cancer tab. Some of the guys here post regularly to that column and you will probably find some helpful advice there. And maybe prompt more questions. If you feel comfortable posting more specifics about your sons cancer and what stage, etc. there will be someone who has been there already and will respond. Good luck to your family. We will keep you in our thoughts and prayers. Please keep us updated on his/your journey.
Lynda
Lynda3 years UTIs
Indiana Pouch – July 2010
Pulmonary Met. – May 2011
Chemo started June 2011
I am so sorry about your son’s diagnosis, especially at such a young age. You are doing the right thing by trying to learn as much as you can about options.
I just wanted to welcome you to the site but unfortunately can’t answer your questions on that particular topic. There are very knowledgeable members that post here regularly who will share their experiences with you. In the meantime, you can do a search in the forum for “neobladder” and find several useful posts. Best wishes…
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TNSign In to reply.
