Newly diagnosed – TURBT scheduled

[Carebearit]

Hi,

My dad began having symptoms a couple weeks ago. He recently had a cystoscopy and  has been diagnosed with two bladder cancer tumours. One is very large and starts near the bladder neck and extends to nearly block both ureters. The other is located at the top of the bladder. The urologist has hypothesized already that they are high grade. He will be having a TURBT mid Nov to remove as much (or hopefully all) of the tumours. The doctor mentioned having to potentially do another procedure after this one and then taking it from there as to what may need to happen next pending the results. Dad is in his 80’s and has other health issues which greatly impact his mobility. We are trying to take it one day at a time while remaining hopeful but realistic. We were told today that dad will be kept overnight and may or may not be sent home with a catheter. If he has a catheter, Home Care will be ordered. I’m trying to prepare as best we can for recovery. I’m considering going online and ordering a pair of tear away (basketball) pants with domes down the side to help with managing his catheter. I’m also considering getting in a supply of incontinence products for after the catheter comes out and a protective sheet for the bed. Overkill? What kind of incontinence product would be helpful – full briefs or pads? What helped make your recovery as smooth as possible while maintaining as much independence and dignity as possible? How realistic should I be about the availability of home care in ON? Will they only be there to do teaching? How often will the bag need to be flushed, emptied etc? I’m not sure mom nor dad could manage it so I am considering if I need to move in with them for a bit. I’ve read the BCC booklets – very helpful! Anything else I should know or read to prepare? Thanks so much!

[marysue]

Hi Carebearit:

Sorry to learn that your Dad has bladder cancer.  I’ve had it 3 times.  My third time was last fall and was the first time that I went home with a catheter in for 5 days.  The decision as to whether he will need a catheter post op will be up to how well he can pee the next morning.  For the majority of patients the usual post TURBT routine is an overnight stay and the nurse takes the catheter out the next morning.  You stay in the unit until you have peed successful a few times without incident.  With my first two TURBTs in 2008 and 2010 I had no issues with post op voiding and was sent home once I peed well 2-3 times. After each void the nurses use a portable ultrasound to see how well your bladder is emptying. I had complications the 3rd time and that was the reason for sending me home with a catheter.  It is not as complicated as it sounds.  If he has the same type that I had the urine just drains into a bag and there is a valve that you can open to drain the urine directly into the toilet. No flushing of the bag or tubing needed. Home care did come and remove the catheter for me 5 days later.  There are leg bags and floor bags.  The floor bags are larger.  Leg bags may not be big enough to get through the night.  The hospital nurse recommended that I keep the floor bag in a small bucket just on the slightest off chance that it leaked.  I was able to sleep through the night without the catheter waking me up. It did limit my mobility a bit but my ingenious hubby rigged up a bag and strap contraption that I put the bucket into and after placing the strap over my shoulder I could pick up the bag by its handles and walk around a bit.

If your Dad has mobility issues and this task is too much for your mom, I do recommend that you or someone else that is a trusted person in your circle keep an eye on them at least for the first 48 hours.  Your Dad will most likely be prescribed a post op pain killer and an antibiotic to prevent infection.  If you can get home care to come in daily that would be ideal.  Given that your parents are elderly hopefully that will make the case for getting a nurse to come in post op.

As for bed and personal protection, while he has the catheter in there shouldn’t be too much of a risk of messing the bed but a small mattress pad under him at night would be a good idea as a just in case the catheter does leak from where it is in his penis.  As for personal care products, I suggest getting a few of each of pads and full briefs and get your Dad to try them on in advance to see which he is most comfortable in.  He shouldn’t have an issue with leakage while he has the catheter in.  He may have a bit of an issue when the catheter is out.  Some people do experience bladder spasms for a while post op and given that he has mobility issues holding on until he gets to the toilet might be a bit of a problem at first.  All that being said, he may be just fine.

As for next steps, once the surgery is over as you already know it will depend on the pathology results.  Your Dad may need a repeat TURBT if the surgeon feels that there could be some tumour left behind or if the stage of the bladder cancer warrants it.  If this happens there will be a repeat pathology from the second surgery and the next steps from there will obviously depend on the results.  Any further treatments, surgeries, tests etc. will be discussed with you all taking into the account of his age and other health issues.  The one thing in that type of discussion is to get the doctor to present all the options and discuss the pros and cons of each.

Your Dad may not want to eat too much in the beginning but helping him with a light diet and drinking lots of water post op will be the most important.  He should be given full post op instructions before leaving the hospital.  If you have further questions don’t hestitate to post them.  All the best.  (((HUGS)))

[Nightingale]

Hello Carebearit,

Thank you for posting your Dad’s situation in the Forum, and welcome to the Forum.  The suggestions made by Marysue are great.  She also happens to be very involved with the National Bladder Cancer Women’s Support Group and has a vast amount of knowledge and experience to share.

I am a 13 year survivor and had 3 procedures as the Cancer returned 3 times; which they tend to when they are classified as low-grade non-muscle invasive.

Carebearit – I am based in Hamilton and facilitate the monthly Support Group.  Our next session is coming up on Thurs Oct 26th, starting at 6:30pm.  If you’re nearby and able to join either in-person or via Zoom, I’d be happy to send you all the information.  We typically go until 8:00 PM.  We have a number of Care givers join our call and I’m sure you’ll find it very informative to hear what they have to say.  You can reply to this post, or private message me by clicking on ‘send a message’ – the link is directly under my Alias name.  BTW, sometimes Marysue joins my Support Group to participate and share any new information she might have.

My best,

[Carebearit]

Thanks so much marysue! It was exactly the type of information I was looking for but could not find online.  The bucket idea and picking up a sampling of incontinence products – genius! I’ve already shared some of your tips with mom too. I’m feeling a lot more confident and prepared now. I really appreciate that you took the time to share your experiences. Thanks so much!

(((hugs)))

Carebearit

[Carebearit]

Thanks so much for the welcome Nightingale! And thank you also for letting me know about the support group meeting. I’m not sure if I can make it in person but might be able to do Zoom. I’ll private message you.

Thanks so much,

Carebearit

[marysue]

All the best Carebearit.  Let us know how it goes for your Dad and if you have any other questions. Fingers crossed and prayers said for a successful surgery, speedy recovery and positive pathology results.  The best news that a bladder cancer patient can get post op other than no cancer is “Non muscle Invasive, low grade” which means very localized and slow growing/non aggressive.  ((((HUGS))))

[Carebearit]

Hi,

Finally getting back with some follow-up new about my dad. Dad came through his TURBT okay. They removed all the cancer they could see – which was a lot – and were able to unbury his ureters. It was a long day as when I called the OR to check on dad, they said someone would come out to speak with us and let us know which room he would be admitted to overnight. No one came and we sat there until nightfall worrying. I finally had to go wondering the floors looking for him. They were most apologetic but it made for a rough day. I ended up requesting that they keep dad an extra day so he could be seen by physio as he was very unsteady on his feet. They recommended a better walker for him and made arrangements for Home Care as he had to go home with the catheter.

Dad’s physical recovery has been very slow and at times it has been very disheartening for him. All of us underestimated how much this surgery would take out of him. He had three falls in the first two weeks home and many near misses. The Home Care OT was wonderful and set dad up with some equipment so he is as safe as we can make it. The nursing support has been not as great. Given his frailty they did relent and not make us drive him to a clinic for care but the home visit nurses are swamped and we never know if they will answer our calls, what time they are coming or even if they will show up.  They provided no teaching to my parents or myself. I had to google it and ask a friend who is a nurse for advice. Dad and mom were unable to manage emptying the bag independently and swapping day/night bags was totally beyond them.  I ended up having to move in with them for a month. Two weeks in, when the nurses attempted to remove the catheter again, dad lasted 1.5 days before he became unable to pass enough urine. The nurses were informed but decided to leave it until morning. When they finally arrived and put it back in, they removed 1 L of urine. Not impressed – next time I will insist they come! After this they decided they no longer needed to make home visits until the next try to remove it even though my parents could not manage emptying the bag. They left me with one spare bag and refused to order any more telling me just to rinse the old one with well water once in a while. All the information I had read suggested putting a vinegar/water or bleach/water solution in the bag to sanitize it when doing bag changes and the hospital had told me Home Care nursing would be coming out to put a new bag on each week. The nurse denied all this. I ended up having to insist and they have agreed to provide more bags and continue weekly visits but so far the visits seem to be only checking his vitals – they don’t touch the catheter. I’ve had to return to my home but make daily calls and drive out to check on my parents a few times a week. They are just using the night bag 24/7 and empty it (with difficulty) once or twice a day. They are on the wait list for home making but it will be many months before they get to the top. A PSW has finally been arranged to help dad with showering twice a week. It was a very rough month.

The urologist delivered some great news and some potentially not great news at the follow-up appointment. Dad’s cancer is not muscle invasive and low grade! We are so very thankful. A follow up cystoscopy in three months but otherwise no additional treatment. The not great news – the difficulty urinating may be from either the bladder or the prostate or both. We will try to remove the catheter on Jan 3 but it could be many months or never that he will be catheter free. That is very difficult news for dad to hear. One day at a time…

Anyway, sorry for the book. Thanks for all of the advice and support.

[Nightingale]

Hi Carebearit,
I am so glad to hear that your dad’s cancer is low grade and non-muscle invasive. Sad to hear about the challenges he is having in have his bladder emptied. I am going to reach out to a nurse who specializes in wound Ostomy and continence, to see if she has any suggestions/tips for your dad (and mom as his caregiver).
Hang in there! Should your dad be interested in joining the Hamilton Support Group, let me know and I will add him to my list.

I’ll be back as soon as I hear from the nurse.

My best,

[Nightingale]

Hi Carebearit,
Here is the response from the nurse who specializes in wound Ostomy and continence. I’ll private message you to alert you to this post.
I’m posting here so other may benefit.

“Catheters are changed monthly
He should be doing penis hygiene with soap and water 2x day
Night and day bags should be cleaned first with water to rinse then vinegar and water(1/4), let sit 30 min then empty and hang to dry
Hccss will provide 1 night bag q2weeks and 2 leg bags q2weeks and that is all.
The nurse will need to reorder every 2 weeks.
Hccss is now starting to have patients start to pay for catheter supplies, so if they want to change more often, they can order on canmeddirect
When the attach the bag to the catheter, they should be cleansing the connecting ends with rubbing alcohol to disinfect and decrease incidence of infection.
Hccss will not provide nursing to change or clean bags. That is up to patient.
If he has a psw, for personal care, they can clean the pouches.
An easy way to clean bags is use of a funnel or a needle nose plastic ketchup bottle”

I hope this is helpful.

My best,

[Carebearit]

Thank you so much, Nightingale! I really appreciate your information and support. This information confirms what a friend who is a former Home Care nurse told me and also provides more information about supplies and ordering that she was unsure about. We were very thankful that a pharmacy delivery came a couple days before Christmas with a few more supplies that will probably get us through to January 3 when they attempt to remove the catheter again. It is also helpful that the night bags they provided this time are a consistent kind as it makes it easier for my parents to learn how to empty them.

Crossing my fingers that this next attempt is successful. (Although it may bring with it more challenges as dad is only producing about 500 ml all day but over 1000 ml each night and the more times he has to get up each night, the bigger the risk of falls.) As my dad says – the “golden years” where the only thing “golden” is your pee – except when even that is not. LOL!

Carebearit

[marysue]

Hi Carebearit:

What an adventure you and your father have had!  I’m sorry to learn of all the difficulties.  I’m curious as to him only going about 500 ml for the whole day. That is not very much.  How much water is he drinking?  It is natural that there would be more urine in the bag at night if he is sleeping for several hours.  If his urine is on the dark side it could mean that he is not drinking enough.  That is a common thing with the very elderly.  My late SIL’s mother refused to drink much because she had mobility issues and hated to have to get up to use the bathroom and that of course resulted in a very serious bladder infection which in turn affected her mental acuity and ability to keep balanced.  Keeping very well hydrated is key after a TURBT surgery.  It not only helps prevent a bladder infection post op but helps speed the healing of the surgical wounds in the bladder because of keeping the urine very diluted.  The extra liquid will also help flush out any debris i.e. clots, scabs from wound sites prior to the catheter being removed.

That was part of the reason I ended up with the catheter being in for an extra week.  The catheter came out after 5 days but after about 4 hours I couldn’t pee any more so my hubby took me back to the ED and the nurse reinserted the catheter.  When she did, about 600-700 mls of urine came out along with lots of mucus and scabs which the nurse told me was probably the source of my trouble in addition to the infection.  The debris was blocking my urethra when I tried to pee. I was already drinking like a fish but ramped it up even more to get all the gunk out of my bladder and when the catheter was removed the second time I had success.  I didn’t have issues the first two times post TURBT.  I could pee right away.  This time I think it was due to the fact I had to have a more extensive surgery, plus I had chemo in my bladder immediately post TURBT.  I’m betting part of the reason for your dad’s difficulties is due to the extensiveness of the surgery.  It is most likely contributing to lots of post surgical debris.  Age may play a part as well.  I was 50 when I had my first TURBT and almost 65 when I had the third.  While I’m not old old, I’m definitely noticing the difference from 12 years prior.  I’m taking longer to rebound than before.

If increasing his water intake does not increase the volume of urine being produced I would speak to his doctor about getting his kidney function checked out.  Sometimes a general anesthetic can whack the kidneys a bit.  That happened to me this time around.  My filtration rate was very slow for the first few days after surgery.

I would suggest that he use the floor/night bag as much as possible to avoid having to change out between the leg bag and night bag.  When I went home with a catheter for 5 days which ended up being 2 weeks due to infection and inability to pee I only used the night/floor bag as I didn’t want the hassle of changing out the bags.  The kind of floor bag I had didn’t require any flushing or rinsing out.  I just emptied it into the toilet every 3-4 hours.  It had a screw top that I open and would just hold the bag over the toilet and empty it and re-screw the cap on. Most nights I slept the majority of the way through because of the catheter and not needing to get up to pee.  What woke me up was the post op pain and I needed to get up to take more pain killers.

Anyhow, those are my thoughts.  I hope that I helped.  Best Wishes going forward.  ((((HUGS))))

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