Catheter surgery gone bad

[Kimmilemo]

My husband just woke up from recovery with two catheters one the normal way and one out of his belly under his belly button. He has had nothing but trouble since his selvedge prostatectomy aug 2. He had his catheter in from that surgery two weeks, then in so much pain they put another one in September that one had to be replaced in the ER. Now he went back to his original urigoliist surgeon team at CTCA and they put another new one in and the belly one.

The Selvedge prostatectomy has been brutal and he ended having positive margins no lymph nodes at this time but something in the report said cancer was around the bladder neck. I wonder if this is going to be a ongoing problem. Anyone out there have any ideas of what might be happening?

Concerned wife.

Kim

[Tall_Allen]

IMHO salvage prostatectomy should be outlawed. The catheters will allow the tissues to heal. Talk to a specialist about getting an artificial urinary sphincter. Unfortunately, he can't have anymore radiation to get what was left behind. If you find a specialist in high dose rate brachytherapy, he may be able to get to those areas. Otherwise, hormone therapy can control the cancer for a long time.

[Kimmilemo in reply to Tall_Allen]

Thank you Tall Allen. Know of any specialist around Saint Louis? Or we have a daughter that lives in CA.

[Tall_Allen in reply to Kimmilemo]

I think very highly of Mitch Kamrava at Cedars-Sinai for HDR brachy - he can tell you if HDR brachy can be used focally on the bladder neck growth. I don't know if Siteman offers it - focal HDR brachy is highly specialized.

[Grumpyswife in reply to Tall_Allen]

If you find a surgeon willing to do the artificial sphincter please tell me who. Our specialist urologist was at the U of Minnesota would not touch that for or to my husband who had salvage radiation about 15 years ago. He had brachytherapy as well but was continent until recently. He hates being incontinent so he might consider the risk of surgery.

[Tall_Allen in reply to Grumpyswife]

I can only speak locally in L.A. Dr. Stuart Boyd at Keck/USC is known for placing AUS devices.

[cujoe in reply to Grumpyswife]

mjb,

I had the AUS800 implanted about two years ago. I'm in NC, but have enjoyed a MUCH improved QOL since the surgery. I plan to do a post about my experience with the device in the next week or so. My situation was pretty straight-forward and had none of the complications you describe, so I can't speak to whether or not it is an option for you.

Good Luck in any case and best wishes for an improving situation going forward!

Be Well,

cujoe

[Grumpyswife in reply to cujoe]

Thanks. It's for my husband, BTW. He has had laparoscopic prostatectomy, salvage radiation afterward and brachytherapy after that. So I guess there is the possibility of lots of scar tissue down there. Have you had any of the things I listed? Carolina would be much closer for us.

[cujoe in reply to Grumpyswife]

I had robotic surgery (non-organ confined, extra-capsular involvement, & cancerous rt. side seminal vessicle) and due to poor final biopsy pathology, did 8 weeks of IMRT adjuvant radiation about three months after surgery. My urethra was also "torn" during the surgical placement of the temporary catheter. (One of the risks of surgery at a "teaching hospital"). That likely resulted in scar tissue that contributed to my severe incontinence.

The common consensus is that continence will not improve after RT, and since I chose to do mine ASAP after surgery, I willing accepted the risk involved with early RT. However, after dedicated practice of kegels and several months of PT, I was going through 3-5 heavy pads every day. Coupled with the constant fear of leakage, my QOL left a lot to be desired. As a result, about a year after being evaluated for it (& 3 years after my prostatectomy), I decided to have the AUS800 surgery.

It is worth commenting that surgery was actually "worse" than the robotic prostatectomy and the risks of problems over time are not insignificant. However, after 2 years the AUS800 has so far provided an almost immeasurable freedom from worry. In my case, I have gone from the 3-5 pads and near-constant leakage worry to 95+ % continence. The occasional stress-incontinence and rare accidental activation of the device are near-inconsequential in comparison, and as my confidence in control have returned, I now use thin pads (Shields) as "optional equipment".

Be Well - Cujoe

PS I actually knew you were asking for you husband, but I got lost in the moment.

[Grumpyswife in reply to cujoe]

Thanks for your honesty. That’s what I need to know. I will discuss your reply with my husband so he can weigh the risks.

[cujoe in reply to Grumpyswife]

mjb

The following two publications will help you understand/evaluate the surgical options for moderate-to-severe male incontinence. Most of the sling options are variations on a theme. You may also want to browse the list of similar/cited articles located in the right-hand column. The first order of business would be to have a urodynamic evaluation. I also kept a daily pad (weight) log for 30 days during my PT. (The results of the log were pretty weird, as they were basically random and almost completely uncorrelated to activity level, fluid intake variations, etc.)

The artificial urinary sphincter and male sling for postprostatectomy incontinence: Which patient should get which procedure?

ncbi.nlm.nih.gov/pmc/articl...

Male Stress Urinary Incontinence: A Review of Surgical Treatment Options and Outcomes

ncbi.nlm.nih.gov/pmc/articl...

Be Well - cujoe

[Kimmilemo]

I’m not for sure if they can do radiation anymore. He had that first time around 10 years ago with Lupron . Had a good run of 9 years until his Psa started to rise but his Psa never gets very high it usually starts with discomfort first. So this time they did the selvedge surgery on aug 2. They said these new catheters will stay in six weeks. They said he is having so much complications because because of all the severe radiation they did first time around. I don’t know if his Surgeon was as certified as yours.

[Hidden]

I’m sorry Kimmilemo. It sure sounds like hell right now.. I didn’t know they could do that under the belly button ...They cleared my urethra& ,bladder with adt and 8wks of RT. I had tubes out of my back and a foley then stents for 11/2 yrs while the treatments shrunk everything allowing me to pee again.. I did experience some urological hell also and I understand . You will find the right way to improve your urology and regain some quality of life... I am interested in your progress... Take care & God Bless!

[Hidden in reply to Hidden]

The non-conventional through-the-wall arrangement is called a supra-pubic catheter. I sported one after HIFU surgery. I was amazed that they can just remove it and everything just seals up.

[Hidden in reply to Hidden]

Similar to the neauphostimy tubes .Thru the back , directly into kidnies.

[Hidden in reply to Hidden]

That sounds painful. Whenever I inadvertently tugged on my SPC drainage tube I felt icky visceral discomfort. Was sure glad when it was gone.

[Hidden in reply to Hidden]

Me too... I pulled my right neauphostimy tube out twice during my year and a half living with them. Emergency cath lab surgery.. not fun . Thank god I survived that mess. My prayer is for anyone in that state presently to get out of it ASAP..

[Kimmilemo in reply to Hidden]

What does HIFU stand for? He still is not feeling well. We just arrived in Zion Ill at Cancer centers of america , his Oncologist and surgeon the urolgists will also be meeting with my husband tomorrow. he will be getting new scans tomorrow. we are close to three months out from his SP surgery which did not take his psa down low enough at six weeks out it was still at a .2 I believe . Then he had all the complications with his catheter then removed it then had to put it back in then they ended up doing that supra-pubic one that you mentioned with also a new one the regular way. he's been getting nausuated the last two days and no out put from the supra one the last three days, and the other catherter started with real dark red out put yesterday, and thats when he started not looking good or feeling good, worse than usual. his hands are ice cold and he looks yellow. Hope they can get all this figured out soon. he has positive margins from the surgery but no lympnoids, this is a recurrence. his first dx was 2008 PCA gleason 8 did 30 plus radiation treatments and two years of lupron. kept him in reission until this march 2018.

[Hidden in reply to Kimmilemo]

Wow! It’s a lot to take in. These urological complications are demoralizing for the patient. It is hell. I pray he improves.. I also started with RT & Adt..I hope i can get those ten years of good status.. I’m following in his foot steps .so to speak.. I’m awaiting the “Plan” forward..for him . God bless you both.. many prayers Kimmilemo.. Scott

[Kimmilemo in reply to Hidden]

Praying for you to have even a longer run than that, some do, everyone of course is different. I think a new T cell treatment for cancer is on the horizon was just found and he was awarded the Nobal Peace Prize for it. So a treatment to your immunology vs the cancer. Look up James Allison and Tasuku Honjo for their discovery of cancer therapy by inhibition of negative immune relation.

[Hidden in reply to Kimmilemo]

That is tough and scary to deal with. HIFU is high intensity focused ultrasound. I chose that over radiation after being told that, after prior TURP (roto-rooter) surgery for an enlarged prostate I was not a good candidate for RP surgery.

[Hidden]

Did you say that you had a nine year run on Lupron?

[Kimmilemo in reply to Hidden]

Yes my husband did, he had three months radiation using the calypso and then two years of Lupron kept everything good from diagnoses to next diagnosis just a few months short of 10 years.

Sorry to hear about your tubes out your back, ouch . I’m glad you got it turned around. I’m sure my husband will too. Might have to reach out to some of these fine daughters across the country if it doesn’t. Although my husband feels confident with his care at cancer centers of America in Zion ill

Kim

[Hidden in reply to Kimmilemo]

Many prayers for him to improve.... Peace for you both in difficult times and suffering .. Scott

[Kimmilemo]

Great advice and help, you may not be Dr’s but your smarter than the avg bear 🐻 thank you again.

[charlesmeyers1964]

maybe he waited for the surgery???? me i had a psa of 5.7 Gleason 9 then the biopsy then the lupron shot then radiation. it took 9 month but the lupron shot brought my psa down and when it started up did the radiation.

[Kimmilemo in reply to charlesmeyers1964]

Yes he did wait because Cancer center of America was our second opinion the first diagnoses in 2008. CTCA said statistics at that time for my husbands case only a 1% difference in five year out survival rate based on surgery or aggressive radiation followed with hormone shots. Our first opinion was a group of Saint Louis urologist that didn’t even numb my husband for his biopsy, wanted to do the surgery then radiation back then, he also wanted to tell me my husband could die but he couldn’t bother with him till he came back from his cruise vacation. We went to CTCA we had diagnoses, staging, statistics and a treatment plan in less than three days. My husband that Christmas walked a hand delivered Christmas card to those local group urologist thanking them, otherwise he wouldn’t have went to CTCA if he had better handled better. Actually the guy the local group of urologist would have used to administer his radiation with the calypso trained under the dr that did the treatments in Zion Ill at CTCA. So it was a no brainer back then where yo go and what to do. This time not as much.

[lrgalla]

Your husbands predicament sounds awful and brought back distant memories for me. I am not a doctor so I can offer not medical advice. However I underwent salvage surgery in 2014 when it was discovered I had radiation damage to my bladder and active prostate cancer cells in the bladder neck. The surgery was major with the removal of the remains of my prostate, my bladder, appendix and lymph nodes. I was fitted with a stoma (Urostomy) and my health now is fairly good. I have 2 mets and a third suspicious diagnosed recently and am now back on ADT. The urostomy needs a little attention on a regular basis but it certainly has fixed any incontinence issues I had and the medical emergencies I had with clotting, bleeding and retention I had prior to the surgery. I am uncertain if your husband qualifies for the bladder re-section and creation of the stoma but it might be worth your while discussing this with your medical team.

Lee

[Kimmilemo in reply to lrgalla]

Lee thank you for that information. In the back of my mind is if this doesn’t work what’s next. So I’m glad you pointed it out. I would rather have the information prior to discuss than be in the dark. Unfortunately my husband took this trip without me so I have no idea what the urologist truly said or the urologist that did his surgery this time was the original surgeons partner. My husband said since the one catheter has not been working they put two. But really other than right after the surgery in my opinion it hasn’t worked well since. I drove from Saint Louis to Chicago today because there was no way he could make it home on a train or plane without me. I’m driving him home tomorrow. Next appointment with our MO in two weeks. I have lots of questions in what the heck is next!

[Hidden in reply to Kimmilemo]

Kim , he needs you. Your love is the best medicine. My wife didn’t leave my side for the entire time. I couldnt have done it alone either. Don’t drive yourself nuts with having all of the answers ..You’ll learn quickly.. Its not knowing that is scary.. None of us know the future .. not even the doctors.. Hope he gets to home sweet home!! Take care. Scott

[Hidden in reply to lrgalla]

Lee, you got thru some rough stuff.. one never really thinks about these procedures until you are face to face with one.. It amazes me. what mod med can , and can not do..

[lrgalla in reply to Hidden]

Hey Lulu ....It also amazes me what the human spirit can accomplish from all the angles of good and bad throughout the world.... Mind you there are some idiots we meet along the way for comparisons.

[Hidden in reply to lrgalla]

“some”? I’ve found many ...Just my luck .. The mind is our most important muscle. just hoping that the good outweighs the bad..

[JimVanHorn]

I am so sorry for his experiences and I will be praying for his recovery.

[Kimmilemo in reply to JimVanHorn]

Thank you Jim , mighty kind. I pray for all you men and your families. This is the good kind of cancer is a shame.