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Update on husband's surgery - 5 weeks post

graycloud
Posts: 34
Joined: Jan 2018

Just wanted to give a brief update on my husband's surgery.  Quick background - diagnosed at age 55 October 2017 after 2.5 years of rising PSA.  Original biopsy done locally showed 4 + 3.  We did our research, and landed at Memorial Sloan Kettering with Dr. Befhar Edhaie.  Tried to qualify for the Ablation Study at MSK and Mayo.  But his testing at these two facilities plus Johns Hopskins showed Gleason 9.  We opted for surgery at MSK.  Took our time for his recovery post biopsy (12 weeks to heal post biopsy - remember that) , and time to continue to get his body in best shape possible for surgery. Met with specialists at MSK to start pre-surgery protocols for ED and Continence.   

Surgery was 1/30/18.  Total surgery time was 7 hours/45 minuites.  Lymph Nodes removed and prostate removed.  Surgeon took his time to go ml by ml to preserve nerve bundles on both sides - and he was successful.  My husband's surgery was one of his most difficult due to location and small size.  All lymph nodes tested negative, margins tested negative - best possible outcome we could have prayed for.  After post surgery pathology, he was downgraded to a 4 + 3. 

I'm not going to sugar coat the surgery and recovery.  It's tough.  There's a reason to go in to surgery in the best possible physical condition.  My husband lost 40 pounds, and was up to walking 7 miles daily along with lifting weights and other cardio. Best shape of his life.   Walking is the cure for pain level post-surgery. He walked 3 miles a few hours after surgery.  And walked over 5 miles daily after surgery.  Catheter was a "medievial torture device".  Make sure you have a leg catheter for walking - much easier than the standard night bag catheter.   The day he got the catheter out (6 days post surgery) was the highlight of the 10 days in NYC! 

Traveling home post surgery was tough.  Airline traveling is no fun when you're healthy.  Absolutely dreadful after major surgery. 

He started physical therapy for pelvic floor muscles two weeks ago.  Kind of wish we had started that pre-surgery.  Keep that in mind.  He did pre-surgery kegels, but there is so much more you can do to prepare.  He is working on strengthening the sprinchter muscles that help with bladder control. One side is doing well.  Working on the other.

Bladder issue is the main thing that is bothering him now.  It is getting better day by day - just not at the speed he wants.  Big  issue is that everything to deal with this has to be ordered online.  Tena men's products have been the best for him with the amount of walking he is doing.  He had to change from loose fitting boxers to tighter fitting boxer briefs.  Wish we had switched over to those a month before surgery so we could have found what works best pre-surgery and he could have gotten used to wearing these.  Also, men's restrooms are built with little to no privacy so that's an issue we've had to work around as well when out in public and the need to change pads, etc. 

ED issues - it's working.  That's what's keeping him sane with the bladder issues.  It's not like before, but we're working on a new normal which I'm perfectly happy with.  He did the pre-surgery therapy, and had taken his 2nd challenge dose post surgery.  Honestly, he does well without challenge dose.   We're looking forward to meeting with Dr. Mulhall in 3 weeks to discuss continued improvement.   

This whole process has been a mind game for sure.  The emotions all over the board.  My main concern was for him to be healthy - I could handle the side affects.  His main concern was no side affects.  He's working so hard on his recovery.  At least he's past the emotional roller coaster of pre-surgery, as well as the initial post surgery emotional roller coaster.

I applaud every man who has faced prostate surgery and treatment.  You are my heroes!

 

Clevelandguy
Posts: 441
Joined: Jun 2015

Hi Graycloud,

Glad to hear about the improvement, sounds like he is getting better every month. Looks like the worst is behind him. He still has a lot of healing to due, for me I was getting better into my second year.   He can try a full adult diaper for the first few months to get over the privacy thing in public bathrooms.  If he graduates to a pad and tighty whities he can just go to the wall urinal and whip it out the side of the leg hole like I do, you get the hang of it after a while.  Sounds like in you he has a good support network,  that's very important. Hopefully he has many undetectable PSA readings in his future, get out and enjoy life.

Dave 3+4

lighterwood67's picture
lighterwood67
Posts: 204
Joined: Feb 2018

Thanks for the report.  I am 67 and they tell me I am in pretty good shape. The physical therapist told me I scored a 4 out of 5 on her rating system.  They tested my kegle muscles with three probes in the rectum.  The surgeon made me flex my kegle muscles during a cystoscopy.  I got to watch that, very interresting, crushed it.  Anyway looks like you and husband are doing fine and that is what it takes.  My wife is very supportive.  Done with all of my pre-op just waiting for 3/20/2018.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3279
Joined: May 2012

Graycloud,

Your husband is only six weeks post-op.  Urinary control  should be pretty good by now, but potency commonly, even with the best surgeons and outcomes, usually takes at least several months to begin returning, if not up to a year.   It sounds like the two of you are exceptionally well informed and very throrough in maintaining your health and wellness.

Congrats on his great progress thus far,

max

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