Things They Didn't Tell Me And/Or I Didn't Know To Ask After Prostate Cancer Diagnosis

WOW

AS A VERY RECENT GRADUATE

co2...gas buildup indeed landed in right shoulder and along collar bone....just as if rotator cuff had been shorn....nurse said it is common and put instant heat packs on shoulder and by mid day surgery day plus one with walking and farting pain was gone.

Lubrucation...they give you tiny sample tubes of ky type lubrican for around the catheter....it provided short relief...sned wife to surgical supply store and for $2.99 sh came back with SURGICALLY STERILE LUBRICANT tube...while sitting and waiting for that first BM--finally day 4--I would twirl some of the lube tween thumb and index finger and smear around glans and catheter tube near engtry...provided such relieve I started using a bit around chafed areas near abdonmen.

SELF INJECTION FRAGMIN...sent home with a carton of heparine related any b lood clot meds...fancy needle which auto retracts into handle upon one does....must use for ten days at same time each day alternating upper thighs or pinching stomach,,,moist paper towel with a dab of Hibiclean pre surgery cleanser worked or I guess a litle alcholol swab...docs said it is just a precaution....als gave me 6 500mg cipro 2 day before...2 day of catheter removal and 2 for the day after in case of infections.

First dump...you have to realllllllly fight the urge to squeeze. Read a book or magazine, or whatever but after 10 mins you might just pass gas, which is okay.


WALKING...POST UP PLUS DAY FOUR WALKED ALMOST 2 MILES WITH NO PROBLEM, B UT THAT night burning pain and worse around catheter...called urological nurse practitioner at sloan kettering and first question was "how much are you exercising." She said, "It is normal pain, but don't get too energetic....it's a fine line...walk, good, but remember each step is a slight irritation of the catheter and the steps add up...best to exercise but not overdo it first few weeks for lots of reasons."

mbshine
AGE 62 ANGEL FIRE, NM
DX 7/08
EMAIL: [email protected] pls put “Healing Well” in subject
psa HAD GONE FROM 1.7 TO 4.3 IN THREE YEARS...DIGITAL AND ULTRA SOUND EXAM SHOWED NO ENLARGEMENT.
BIOPSY SHOWED 2 OF 12 CORES POSITIVE.
TWO TUMORS SHOWED GLEASON 4+3 AND 3+4
NO INDICATION OF ESCAPE FROM CAPSULE OR METASTASIS
STARTED CONSULTATIONS AT SLOAN KETTERING 8/09
DR GUILLONNEAU SAID NO SURGERY UNLESS MASSIVE WEIGHT LOSS.
AT DX 333 LBS, SLEEP APNEA, AND HIGH BP
BARIATRIC SURGERY RECOMMENDED.
LAP BAND SURGERY IN EL PASO, TX 1/23/09
10/1/09 276 LBS, TRIGLYC AND CHOL NORMAL, NO SIGNS OF SLEEP APNEA, ONE BP RX REMOVED AND OTHERS CUT DOSAGE IN HALF;

STARTED QUARTERLY ZOLODEX BY TAOS,NM UROLOGIST, WHO TRAINED AT MSKCC, INJECTIONS AND CASODEX 50MG DAILY 9/08

DAVINCI done 10/19/09 Dr. Bertrand Guillonneau
NYC Memorial Sloan Kettering Cancer Center
Jackson pratt drain removed surgery plus 1 day.
Catheter out 9th day
One heavy duty pad first day without catheter.

PATH REPORT 10/29/09 MSKCC DR VICTOR REUTER
GLEASONS CAN NOT BE DETERMINED, HORMONES DRIED PROSTATE
NO SIGN OF ANY CANCER ESCAPING PROSTATE, OR AT MARGIN
NO SIGN OF ANY CANCER IN ONE LYMPH NODE REMOVED

PROGNOSIS EXCELLENT. PSA IN ONE MONTH
THEN SIX MONTHS
THEN ONCE A YEAR OR MORE
ONE VISIT PER YEAR FOR LIFE

I wish my husband and I had seen this lilst prior to surgery. Had we read prior to surgery alot of anxiety would have bee relieved.
I do have a few to add to this list.
Hip-Hop Pants from a sporting goods store such as Dick's or Dunhams that either snap or zip all the way up the outer side for the catheter.
If bleeding continues for more than 2 weeks post op. report it to the drs, and demand to be seem.
Ask the drs to do a cystogram prior to removing the catheter, infact demand it, if it is not already part of that drs. routine.
My husband had a hole in his bladder from a suture that hadn't healed. Blood had collected and settled there. 4 weeks to the day of surgery my husband started passing blood clots the size of silver dollars If a cysogram had been done prior to removing the catheter,it would have been discovered and alot of pain could have been avoided. He ended out in the local er unable to urinate on his own,in excruiating pain, had to be transported back by ambulance 200 miles back to the hospital with an additional 2 weeks in the hospital for constant irrigation to break up remaining clots. As well as additional unpaid time off from work. That was at least 100x the pain of surgery.
If surgery is performed out of town arrange for a hotel stay for 1 week postop.
Get and use a good lubricating gel for the catheter, and ask for an rx of cortizoncream or ointment for the tip of the penis while the catheter is in.

Understanding Incontinence. Almost everyone has incontinence to some degree. A normal healing period is three to six months. It's caused my trauma to the internal sphincter at the bladder neck during surgery, loss of the urine retaining effect of the now absent prostate, and to some degree, trauma to the external sphincter. The latter is strengthened by Kegel exercises which are beneficial to regaining continence. The stages of recovery of continence start with staying dry at night, then dry sitting, then the ability to retain urine during a short walk, then longer walks, then during exertion. Depending upon to whom you listen, 90-95% of patients regain continence within a year. The process of recovery is not linear, but involves some advances then some regressions.

 

A lot of the posts in this thread are about what we need to know to help our bodies manage with all this stuff.

But having, once more, gone into the kitchen and then forgotten why I was there, I think we mustn't forget about the tricks that PCa plays on your mind due to our brains being so busy thinking about Cancer, treatments and side-effects.

I don't mean nasty mental issues, but just the annoying ones such as:

Going upstairs and not remembering why.

Putting ice cream in the refrgerator instead of the freezer. (or Juice in your coffee insated of milk, or starting to make breakfast at lunch time.)

Picking up the phone and then forgetting the number of the person you were going to ring and then when you do get through you find you've forgotten their wife's name.

Making a coffee and forgetting to drink it.

Calling you daughter by your wife's name and vice versa.

Wandering around a store with absolutely no idea what it was you went there to buy or look at. And even when you make a list forgetting to get the stuff on the list.

No knowing what day of the week it is.

Going to the forum and forgetting what you wanted to look at.

Writing this list and forgetting what else it was you wanted to mention

Oh and by the way fellows this is the point at which you respond and tell me that it's happened to you too and that I'm not going nuts.

Alfred

 

James
The only other things that spring to mind are:
PCa may cause sleepless nights both literally and metaphorically.
You may get more tired more quickly and from less activity.
You may not always be content or in a good mood (I think that's the politest way of putting it)
To help combat the risk of DVT (deep vein thombosis) during the long operation, you legs will be adorned with stretch stocking from toe to groin.

I have been very tired and had disturbed sleep during the last few days/nights. I'm now 15 weeks on from my Da Vinci, but almost feel as shattered as I did after just 15 days.
(And oddly I have been bad tempered in my dreams but in a very mellow mood when awake.)

And then there is a very tricky issue which could have put me in an impossible position. And which I find hard to put into words.

One of the first questions my urologist asked me was if I was married, for he felt that quality of life after treatment (ED etc) had to pay a big part of the decision making process. The "Trade off".
Yes, I am married and have been for over 25 years (and my wife and I started "dating" about thirty years ago.)
Thus I felt I could not make any decisions that were clearly going to alter my life without considering how they were going to alter our lives. And part of that was that I found that I also had to know how well my wife was too, before I could make my final decison. I persuaded her to go to the doctor to have some tests too.
Luckily there were no alarming results, for I still don't know what I/we would have done if it had turned out that both of us had big health issues at the same time.

I thus really feel for Sonny3 whose wife is, I gather, in hospital as I type this.

Alfred

When returning to work (and you are required to wear a tie), neckties and diapers simply don't cut it.  When dropping trou', the necktie dips in the toilet.  Consider bow ties (there is certainly nothing wrong with being known as eccentric - it's a compliment in the South) and be prepared to respond to the inquiries that will surely follow.

One more item. They gave me a small bottle of "rinse-free" liquid soap when I checked out of the hospital. This stuff was great during the time my catheter was in; I could take a sponge bath easily without getting into the shower, and it was especially useful for cleaning the area around the catheter. Just pour a bit into a pan of warm-to-hot water. Ask for it when you're discharged.

45 Posts and I can't believe nobody has talked about jock itch.

Sweat pants are wonderful and very comfortable but I made the mistake of wearing them 24/7 and that caused some jock itch but I can't totally blame the sweat pants. The other issue was the position of the self adhesive / velcro gizmo that kept the catheter attached to my leg. The catheter may have not have had enough slack on it and accordingly my "boys" may have not had enough "breathing" room. My suggestions:

DON'T WEAR SWEAT PANTS IF YOU DON'T NEED to be totally covered up. Shorts and fresh air are VERY important.

By some jock itch cream. If you need it you don't want to discover at midnight that you wish you had some.

Shave your inner thighs. I have also heard that some hospital will frown on your shaving yourself in the pubic area but I think the thighs are safe.
Having smooth thighs will allow you to attach and remove the catheter adhesive velcro holding device with greater ease and if you alternate thighs you have less of a risk of jock itch and less of a risk for skin irritation where the adhesive has been stuck.

As a final note, I'm 12 weeks post up and very very grateful for my results and this forum.

Mike

This is a great thread! Thanks, guys.

soulmate

English Alf is keeping a cleaned up version of this list, so we can just use this one to post things to include there, sorta a rough draft. Add to it as you wish.

bump for the new folks to study

Gleason, your recovery is going amazingly well so fast and so fast too. Sounds like you got a good handle on the incontinence front.
Hope the rest of it goes as well, and soon you will be in the Zero Clubb when you get your first post PSA