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

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James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 10/24/2009 2:00 PM (GMT -6)   
This is something I've been putting off doing for some time, but today's thread has spurred me to start. Add things you found out or know that applies to this list. Sometimes we don't always know what to expect until we have experienced it. Maybe we can help those following. I'd really like it to just listing things we have learned without editorial comment or big discussions and arguing starting about anything mentioned. Let's just list them and agree to disagree without making a big deal out of it. All additions subject to editing to add to the list or cut out unnecessary comment, OK?

1. No two guys will have the exact same experience with surgery or recovery.. Anytime you wonder why someone else is doing different, repeat this line.
2. The need to have a prescription for bladder spasms and have it filled before arriving home after surgery.
3. You can orgasm without an erection after surgery.
4. You can pee with ease with an erection and while orgasming after surgery.
5. There are different sensitivity PSA tests, and their results can scare you if you don't understand that.
6. Painkillers can cause constipation.
7. Walking and water will restart the bowel system and relieve constipation after surgery.
8. Post surgery depression is a very common after effect, so don't get down on yourself if you have it.
9. There's gonna be pieces, parts, junk, blood and goop in the urine coming out of the catheter for some time after surgery, even after removal. All normal...
10. Old and new blood will appear in your urine for maybe months after catheter removal- this also is normal unless bright red and copious.
11. Briefs, one size undersized, hold pads better.
12. The extra-thick Hanes brand (think the Michael Jordan commercials) will work in place of a pad for stress leakers, usually.
13. The big 3 ED drugs aren't a cure-all, it still takes stimulation and interest to hopefully make it work.
14. You will not have a ejaculate after surgery. This is known as dry orgasm.
15. Penis length will most likely shorten after surgery , doctors will say it doesn't happen, but it will for the vast majority of guys. Aggressive and early use of penis pumps may correct this.
16. The swelling of the penis and scrotum after surgery will be massive and in technicolor.
17. Statistics given are just that, statistics, see # 1 above.
18. Prostate removal can cure years of difficulty urinating, allowing you to push the scent block halfway up the urinal back.
19. You may or may not have Cowper's Gland secretion's (pre-lubrication), depending on the extent of surgery.
20. ??- More? let's add them to the thread.

Post Edited (James C.) : 11/2/2009 4:54:51 PM (GMT-7)


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2448
   Posted 10/24/2009 2:16 PM (GMT -6)   
Viagra, Cialis, Levitra, and other drugs are part of the penile rehab program, yet THEY ARE NOT COVERED BY INSURANCE to the degree required.
61 years old
PSA 11/07 3.0
PSA 5/09 6.4
Diagnosis confirmed July 9, 2009
12 Needle Biopsy = 9 clear , 3 postive
<5%, 90%, 40%
Gleason Score (3+4) 7 in all positive cores
CT Organ Scan - negative
Nuclear Bone Scan - Negative

da Vinci 9/17/09 Dr. Mani Menon Henry Ford Medical Institute

Post Surgery Pathology:
Gleason: Changed to (4+3) = 7
Stage: T3a
Tumor Volume 12.5%
ALL NERVES SPARED
Margins: focally positive right posterior mid level
Perineural Invasion: present
Seminal Invasion: absent
Venous Invasion: absent
Angiolymphatic Invasion: absent
Left Internal iliac lymph node: reveals zero
Right Internal lymph node: reveals zero


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4269
   Posted 10/24/2009 2:34 PM (GMT -6)   
Is this list just for surgery?

In 10 years of seeing doctors I was never told of the diagnostics available such as color doppler ultrasound, Combidex MRI , or tests like PAP and PCA3 that give you a lot more information about your PC and its stage.
JT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 10/24/2009 2:43 PM (GMT -6)   
JohnT, I changed the Subject to include anything, we just need to remember to make sure we list it in such a manner that folks know what we are talking about, as far as diagnosing and treatment options. That workable?
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP 110gms.- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
24 mts: PSA's: .04 each test since surgery, Bimix .3ml PRN or Trimix .15ml PRN


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 10/24/2009 4:01 PM (GMT -6)   
Prostrate removal, even if done through small incisions, is major surgery. It will take your body months to recover completely

In the first weeks following surgery sitting may be painful. Some find relief in an inflatable doughnut cushion or a recliner.

Recovery from surgery seldom moves in a straight line. Expect both lack or progress and sudden change.
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0 - now light pads
6 mo. PSA 0.00 -- 1 light pad/day


tallguy
Regular Member


Date Joined Oct 2009
Total Posts : 419
   Posted 10/24/2009 5:52 PM (GMT -6)   
  • First get a list of all the discussion groups/chat rooms on the net to see what everyone else has to say. Doctors, as good and professional as they all are are not perfect and technology is moving at light speed. Hear from others that have been where you are. Google will find most of these.
  • Bottom line is make sure you are getting good advice from a Dr. that has done 200 or more proceedures and has access to the latest technology....and then get a second opinion.
  • you will most likely be dealing with incontinence, erectile disfunction or most likely both to some degree depending on your age, condition, Dr. skills and luck.

SHU93
Regular Member


Date Joined Aug 2008
Total Posts : 328
   Posted 10/24/2009 6:12 PM (GMT -6)   
- Biopsy experiences vary as well. For some it was not a big deal. For others like myself was worse then the surgery.
- For consitpation post surgery drank prune juice, or ate some prunes helped tremendously with keeping everything soft and moving.
- Most importantly you have found the best place on the planet to vent, ask questions, help others, or just talk about this horrible disease!

LIVESTRONG!!
Age Dx 37, 7/2008, First PSA : 4.17 5/2008
Second PSA After 2 weeks of antibiotics : 3.9 6/2008
DRE: Negative 5/2008, Biopsy: 6 out 12 Postive all on right side, Gleason 7 (3+4). Bone Scan/CAT Scan: Clear 7/2008
Cystoscope: Normal 7/2008, Prostate MRI: Normal 7/2008
Da Vinci Surgery 7/2008, PostOp: T2c (On Both sides), margins clear, seminal clear, nodes, clear. Gleason 6(3+3).
4 Post OP PSA's from 9/2008 to 6/2009: <0.1
 
 
 


mvesr
Veteran Member


Date Joined Apr 2007
Total Posts : 823
   Posted 10/24/2009 7:31 PM (GMT -6)   
Hi guys

You have to get your mind ready for the catheter

Mika
age at dx 54 now 57
psa at dx 4.3
got the bad news 1/29/07
open surgery Duke Medical Center 5-29-07
never more than 2 pads
ED is getting better
the shots work great, still can't give them to myself
two years of zero's


RacingOyster
Regular Member


Date Joined Aug 2009
Total Posts : 31
   Posted 10/24/2009 8:17 PM (GMT -6)   
Things to add to the list, that I found out the hard way and wished that I had known beforehand:

1. After prostatectomy the rectum is thin, delicate, and at risk for injury for at least three months after surgery.

2. Be aware of the potential problems with your rectum. Be very careful to eat a high fiber diet, and use a bulking agent like Metamucil or Citrucel. Avoid both constipation and diarrhea – both can cause problems.

3. If you are taking antibiotics, follow each dose with some yogurt containing active cultures to replace beneficial bacteria in your stomach and avoid diarrhea.

4. If you have any pain around your rectum, or have blood in your stool, see a colorectal doctor sooner rather than later. Don't assume it's just hemorrhoids that will heal by themselves.
Living in the northern Atlanta suburbs.
Good health and no symptoms when my annual physical uncovered an elevated PSA.
Diagnosis at age 55: PSA 4.6 - positive biopsy 3 of 12 cores - Gleason 3+3=6.
open Radical Retropubic Prostatectomy with bilateral lymphadenectomy on 6/18/2009.
Pathology report after surgery showed negative margins, cancer contained in capsule
(60 gram sample, Gleason 3+3=6, T2c N0 MX).
PSA at 4 months after surgery <0.1 (all other problems are minor considering being cancer-free).
Catheters required on-and-off for 34 days after surgery due to recurring urinary retention.
Anal fissure due to trauma to rectum from biopsy, surgery, and antibiotic-induced diarrhea.
Scheduled for repair of Spigelian Hernia due to pulling of abdominal muscles during RRP.
Using 1 pad during the day for occasional stress incontinence, dry at night (16 weeks after surgery).
Taking Cialis for ED with no joy so far.


DS Can
Regular Member


Date Joined May 2009
Total Posts : 195
   Posted 10/24/2009 8:52 PM (GMT -6)   

As pertainining to surgery:

You will get a major body shave before surgery.

Leave all modesty at home.

Pain in the testicle(s) may linger for months.

It is best to go through this experience with a loved one for support, help and understanding.

 


English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2218
   Posted 10/25/2009 9:40 AM (GMT -6)   
James,
What springs to mind to add to the excellent list.
 
You will experience unfamiliar things at every turn. That is not a problem.
 
I asked for printed copies of my biopsy lab report and it made a lot more sense when read and reread in the following days and when hunting on the web for explantions. (I forget to ask for a printed copy of the post-op pathology report and getting hold of a copy is therefore on my "to do" list. I'm still pretty sure I remember exactly what I was told, and I wrote stuff down immediately after I was told, but I'd just like to have it on paper and be able to assess.)
 
I not only have a file in which I keep the useful information and data on paper, but I also scanned the important bits and copied them to a memory stick.
 
I took a notebook and pencil to the hospital and wrote down the name of every nurse or doctor who treated me and of all the medications I was given.
 
I asked my wife to take photographs of me at the hospital before and after I went into surgery,  that was handy as I had a few hours after the operation when I was conscious but it later turned out I could not remember anything that happened, but the photos prove I was there and awake etc. She also took a photo 24 hours after the operation, and that was a big help as we could see how much of an improvement there was 24 hours on.
 
Digital cameras mean it was also possible for me to take private photographs of private parts and use them to make objective comparisons of before and after as regard size, shape etc.
 
As for shaving: I shaved myself the day before I went in. I did not have any soreness from shaving.  And I shaved most of the area again twice in the first month to make it much much simpler to wash and dry it.
But I wished either they or I had also shaved the fronts of my thighs where they stuck the big plasters to hold the catheter in place as those plasters were painful to remove.
 
I found I could make a bowel movement easier if I put a bit of vaseline on some toilet paper and spread it about in and around the "hole" and then sat down quietly with something to read. (I was also very regular before the op though so it was easy to know when it was going to be time) I was also lucky that there were lots of cheap plums and grapes in the supermarket during the weeks after my op.
 
In the first two weeks I carried a small cushion around with me and everytime I thought I needed to cough (or laugh) I hugged it and it stopped my abdomen hurting straight away. (Cushion bought specially for the purpose)
 
Don't wear shirts with buttons up the front to start with as the buttons and the extra thicknesses of fabric tend to line up exactly on the scar by the navel and be painful or uncomfortable.
Wear shirts/T-shirts that don't rub on the smaller scars around the belt area, and maybe go without a belt and the buckle for several weeks too. And watch out when you tuck in your shirt that you don't dig your finger nails into one of the smaller scars!
 
Good list!
Alfred
 


Age at Dx 48         No Family history  of Prostate Cancer

Married 25 years, and I cannot thank my wife enough for her support.

April 2009: PSA 8.6  DRE: negative. Tumour in 2 out of 12 cores. Gleason 3+3.

RALP (nerve-sparing) at AVL-NKI Hospital Amsterdam on 29th July 2009. Stay 1 night.

Partial erections on 1st and 2nd Aug 2009, Catheter out on 6th Aug 2009. 

Dry at night, but wearing pads 24/7

Post-op Gleason 3+4. Seminal Vesicles invaded, but otherwise negative margins,

Erection 100% on 15th Aug 2009   Stopped wearing pads on 21st Sept 2009

Pre-op style intercourse on 24th Oct 2009 !! No use of tablets, jabs, VED etc.

 

Post Edited (English Alf) : 10/26/2009 4:39:40 AM (GMT-6)


Jstars
Regular Member


Date Joined Oct 2005
Total Posts : 489
   Posted 10/25/2009 10:20 AM (GMT -6)   
A few more -- waiting for the first bowel movement can cause anxiety for sure!

1) First bowel movement may not occur until 4 days (that was my experience) and is normal.

(any others with longer times so we can pin the upper limit on this one?)

2) Bladder stones CAN form in less than two weeks while catheter is in (they are not kidney stones).

(I had one of these oxalate stones pass (painlessly) a few hours after catheter came out)

3) about shaving yourself before surgery: remember that ONE PERSON reported (and i think others cautioned too) that after discovering he was pre-shaved on day of surgery, they POSTPONED the surgery! Be sure to ask your surgeon if it is OK to do so. A postpone is highly unusual but you don't want to be that 1 in a million!

4) While shaving (if you do) shave the hair off the tops of your hands -- that's where the needle/tape goes on for the IV line).

5) Get tube of medicated (with some pain killer?) cream to use aroound catheter!

***** a couple more items edited in *****

6) Rent or buy a Toilet Seat Commode (goes by lots of names). Man did I thanked Jesus every time I sat on that beautiful high seat!
(I even saw where they have PADDED deluxe models .... nice ....)

7) about walking (or Jogging/Stepping/Shuffling in place) -- it is BORING and you won't keep it up for long -- UNLESS you have an easy goal. I recommend a pedometer and strive for, say, 10,000 steps a day. You can do em in bursts any time -- all day. No time constraints. (Omron HJ-112 or HJ-113 are good pedometers and unobtrusive -- just put em down your boxers).

8) about Walking etc -- start this program BEFORE you go in for surgery -- preferably a year or two or 10 years before -- just do it.

9) One I doubt your doc would recommend, but it's a good one:
Try to score some cialis, viagra and levitra samples from your doc (any docs!) BEFORE surgery.
Get them even if you have no problems in that area (yet).
Firstly, you will find out if any of them work before surgery (if you are already fine, you'll be even finer for longer). That knowledge may save you money after surgery by choosing the right one.
Secondly, leading up to surgery it is easy to get 'performance anxiety' and a a little help from your C,V,L friends will get you thru it.
Thridly, it'll be fun to experiment with them -- really.
Age 58, 195lbs, 6'4", 57 at DX, PSA Aug2008 7 4 ... June2007 4.7 (BPH + LUTS)
Biopsy Nov2008 1 of 12 cores 5%, Gleason 3+3 - Sona showed size 140+ cc (110 grams post op).
02/03/09 open RRP surgery , Nerve sparing both sides, 1 day in hospital, Day 4 first BM,
Pathology Report: All margins clear - No Invasive spread - no change in Gleason score.
02/18/09 Cath out, passed a 1cm oblong STONE within hours.
03/06/09 Started Levitra@20mg / Viagra@100mg / (04/01) Cialis@20mg -- no real effect (thru 10/2009).
04/01/09, 07/07/09, 10/01/09 PSA <0.1 - Stone Was Oxalate stone -- X-ray no stones.
08/09 - started MUSE@1000mcg ... pump&plump - success (alpro ache).
09/09 @500mcg +pump&plump + 2 advil - success - (less Alpro ache).
10/09 TrimixGel (500/300/100mcg): 1st:60%, 2nd:(pump&plump) 60%, 3rd(added 500mcg muse):70-80% -- (no Alpro aches!) but none @ useful hardness!

Post Edited (JimStars) : 11/2/2009 6:03:49 PM (GMT-7)


waterloo
Regular Member


Date Joined Jan 2009
Total Posts : 100
   Posted 10/25/2009 12:34 PM (GMT -6)   
Hello All

Place a hanger between the box spring and mattress to hold catheter bag at night,also recliner chair most helpful for those first few nights and day .Buy or make jogging pant's with snap up the leg.

DEIDRE
    My Husband age 54 at diagnosis
   Radical prostateectomy  in Sept 2006
  • Original Gleason 3+4=7 post op 4+3=7
  • Post Op .004
  • May08 psa 0.05
  • July08 psa 0.09
  • Oct08 psa 0.16
  • Jan09 psa 0.24
  • start"s radiation on March 12/09(33) in total
  • July 09 psa 0.4  TESTOSTERONE 15
  • SEPT 09 PSA 0.55  TESTOSTERONE 13 
  • Bone Scan Oct 19 09


yankee girl
Regular Member


Date Joined Nov 2008
Total Posts : 125
   Posted 10/25/2009 2:16 PM (GMT -6)   
Use Ivory Soap for washing the genital area--NOT a deoderant soap as it can be very drying and painful to an already delicate area.

Yankee Girl
 severe nerve damage/several surgeries on wrist, TMJ--have titanium disks, PTSD, fibro
 
roxicodone, xanax
 


stxdave
Regular Member


Date Joined Nov 2008
Total Posts : 65
   Posted 10/25/2009 5:01 PM (GMT -6)   
Purgatory said:

Good idea, and good list, James

Pyridium prescription for burning urine after catheter removals if needed.

I wholeheartedly agree but beware: Pyridium stains anything it touches a bright orange, underwear, carpet, bed clothes, and shows up in the water in your eyes, so contact lens are also at risk. Other than that it's a great pain reliever.
Dx'd 1999, Age 60, PSA 43, Gleason (3+4=7), T3c
42-3d EBRT w/Lupron/Casodex for 24 months.
July 2001 - Intermittent ADT. Lupron only, MDAnderson biopsy revised Gleason (4+5=9).
March 2007 - Diminishing returns with Lupron, Prostate biopsy (5+4=9) in unradiated lobe.
August 2007 - RRP and bilateral orchiectomy. PSA <0.1
99% continent immediately
Sept 2008 - PSA 0.45, Nov 2008 - PSA 0.67,
Dec 2008 - Resume Casodex, Stricture in bladder neck requiring surgical removal. 99% incontinent immediately.


O Buddy Boy
Regular Member


Date Joined Oct 2009
Total Posts : 106
   Posted 10/26/2009 12:04 PM (GMT -6)   
A few more.

Once you get to the stress incontinence stage, you can cut your large pads into thirds and use them to catch dribbles.

Talk to your surgeon about opiates for pain killers. I'm glad I did. I went on motrin within six hours -- getting on solid food sooner, and reducing effects of depression.

They don't tell you why you need to walk and stretch. The wife/nurse filled me in. Surgery inside the abdomen can affect the internal organs and muscles, causing adhesions (scar tissue sticking together). They can delay full recovery and may require further surgery.

OBB
55 yo
Dx:9/29/09
DRE: Susp
PSA: 3.5
Gleason: 3+4/7
6/12 Cores Positive; Sextants were 1%, 3%, 8%, 15%, 12%, 0%
RALP: 10/10/09
PATH:
Margins: Clear
Lymph Nodes: Clear
Seminal Vesicles: Clear
Gleason: No increase from biopsy 3+4/7
Some perineural and capsule invasion.
T2c,NO,MX


qjenxu
Regular Member


Date Joined Sep 2009
Total Posts : 187
   Posted 10/26/2009 1:19 PM (GMT -6)   
www.healthsystem.virginia.edu/internet/prostatectomy/archivedsitefiles/postop.cfm


(AFTER YOUR SURGERY)

DIET:
Diet, Activities, Skin Care, Catheter, Medication, Recovery Time, Handling SIde Effects, Follow Up Appointments, Contact Information, Back To Top

* Eat clear liquids such as Jello, broth, or juices (no pop or carbonated beverages) until you have a good bowel movement. You may then resume a regular diet.

ACTIVITY LEVEL:
Diet, Activities, Skin Care, Catheter, Medication, Recovery Time, Handling SIde Effects, Follow Up Appointments, Contact Information, Back To Top

* It is good for you to walk around.
* Do not sit in one place for longer than 45 minutes at a time.
* Absolutely no biking, motorcycling, or horseback riding for 4 weeks.
* You can do as much walking and stair climbing as you can tolerate.
* You may take a shower 48 hours after surgery.
* Do not drive while taking pain medications.

SKIN INTEGRITY:
Diet, Activities, Skin Care, Catheter, Medication, Recovery Time, Handling SIde Effects, Follow Up Appointments, Contact Information, Back To Top

* You will have 4-6 port sites (small incisions that we perform the surgery through) that will have steri strips (small pieces of tape) and Band-Aids over them.
* Band-Aids may come off in 48 hours. Steri strips may also come off as early as 48 hours post-surgery or they may stay in place until you are seen in clinic.
* Once your dressings are off, it is not uncommon to have a very small amount of drainage from where your dressings were. There are no staples or stitches to be taken out.

URINARY CATHETER (also called a Foley catheter):
Diet, Activities, Skin Care, Catheter, Medication, Recovery Time, Handling SIde Effects, Follow Up Appointments, Contact Information, Back To Top

* During surgery you will have a urinary catheter placed in your bladder. A urinary catheter is a tube carrying urine from your bladder to the outside of your body into a bag. This urinary catheter will stay in place until your anastamosis heals, which usually takes about 4-14 days. At home, the catheter should drain into a large bag. When you want to go out, you can wear a smaller bag under your pant leg. You and your family will also receive instructions regarding the care of your urinary catheter before discharge from the hospital.

MEDICATIONS:
Diet, Activities, Skin Care, Catheter, Medication, Recovery Time, Handling SIde Effects, Follow Up Appointments, Contact Information, Back To Top

* You may resume your daily medications as soon as you are discharged from the hospital.
* An antibiotic will be prescribed to you, to be taken by mouth. Start this the day before you come in to have your catheter taken out and continue taking this medication for 5 full days. You will receive a prescription the day of your discharge.
* A pain medication will be prescribed for you, to be taken by mouth as directed for pain. You will receive a prescription the day of your discharge.
* A stool softener should be taken by mouth two times daily. You can buy this medication over the counter and do not need a prescription. All narcotic pain medications are constipating and a stool softener will help to prevent this.

RECOVERY TIME:
Diet, Activities, Skin Care, Catheter, Medication, Recovery Time, Handling SIde Effects, Follow Up Appointments, Contact Information, Back To Top

* The operation lasts two to four hours and the hospitalization usually lasts 24 hours. Some patients go home the day of surgery. All patients go home with a catheter in place continually draining the urine into a special leg bag.
* You will be seen about 4-7 days after surgery in the clinic on K-9 to determine if the catheter will be removed at this visit.
* You will be cleared by our team to return to work generally 2 weeks after surgery.
* Most men have difficulty with urinary control at the beginning and will require some form of protection, such as a pad that fits inside your underwear. That is why it is important at the first visit to bring Depend Guards for Men pads and a pair of Jockey underwear.
* Within one to three months, most men have achieved reasonably good control and require minimum protection, if any. Sometimes, the recovery of continence is slower, but rarely more than three to six months. You can perform your routine work once the catheter is out within the limits of your pain tolerance.
* Kegel exercises should be started/resumed after the Foley catheter is removed. These exercises help to regain your continence. At first it may be hard to find these muscles, but can be done by starting and stopping your urine stream. Once you find the correct muscles, repeat the flexing and relaxing of these muscles without urinating. Begin by squeezing the muscles for a count of 3, then relax for a count of 3. Work up to repeating these exercises for 3—5 minutes two to four times a day. These will help to strengthen your muscles around the bladder that help hold the urine. For more detailed information on how to perform Kegels, please see instruction sheet enclosed in this packet.
* The recovery of potency after a prostatectomy can be slow and time-dependent. Even though the nerves to the penis can be spared, there is still some injury from trauma or stretching from the operation. These damaged nerves need time to heal. At each follow-up visit, issues regarding sexual function will be discussed with you by your health care provider. If you have any other questions or concerns, the nurse practitioner can make an appointment for you to discuss this issue in more detail.

THINGS YOU MAY ENCOUNTER AFTER SURGERY:
Diet, Activities, Skin Care, Catheter, Medication, Recovery Time, Handling SIde Effects, Follow Up Appointments, Contact Information, Back To Top

* Perineal Pain (pain between your rectum and scrotum): Call us if the pain medication does not alleviate this. You can also try elevating your feet on a small stool when you have a bowel movement, using Anusol cream, and increasing the fiber and water intake in your diet.
* Scrotal/Penile Swelling and Bruising: This is not abnormal and should not alarm you. It should resolve in about 7—10 days. You may also try elevating your scrotum on a small towel or washcloth that you have rolled up when you are sitting or lying down to decrease the swelling. It is also recommended to wear Jockey or snug-fitting underwear for support.
* Bladder Spasms: It is not uncommon with the catheter in and even after the catheter comes out to have bladder spasms. You may feel mild to severe bladder pain or cramping, the sudden, urgent need to urinate, or a burning sensation when you urinate. Call us if this persists without relief.
* Bruising around the incision sites: Not uncommon and should not alarm you. This will resolve itself over time.
* Bloody drainage around the Foley catheter or in the urine: Especially after increasing activity or following a bowel movement, this is not uncommon. While this is often alarming, it is not uncommon and usually resting for a short period of time improves the situation. Call if you see clots in your urine or if you have no urine output for one to two hours.
* Abdominal Distention, Constipation or Bloating: Make sure you are taking your stool softener as directed. If you don’t have a bowel movement 24 hours after surgery, try taking Milk of Magnesia as directed on the bottle. If after three doses of Milk of Magnesia you still have no bowel movement, it is safe to use a Dulcolax suppository.

FOLLOW-UP APPOINTMENTS:
Diet, Activities, Skin Care, Catheter, Medication, Recovery Time, Handling SIde Effects, Follow Up Appointments, Contact Information, Back To Top

* One week after surgery: You will come to the Urology clinic 7 days after your surgery. At that time, a cystogram (an x-ray of your bladder) may be taken to see if enough healing has occurred in order to remove the Foley catheter. At this appointment, you will to bring a pair or two of Jockey underwear and several Depend Guards for Men pads. Remember to start your antibiotics 24 hours prior to coming to this appointment and continue the antibiotics for 5 full days.
* One month after surgery and every three months after that: You will continue to follow up with the Urology clinic. You will get a PSA drawn prior to each appointment.
* At each visit, you will fill out questionnaires regarding your urinary continence as well as your erectile function. You will receive education materials regarding those issues as needed.
* We will also be looking for evidence of recurrence or re-growth of the tumor. That is done by drawing blood for the Prostate Specific Antigen or PSA blood test. When the prostate gland is removed (prostatectomy), we expect the PSA level to be undetectable (less than 0.2ng/ml). If any PSA is measured after your prostatectomy, then the presence of prostate cancer cells somewhere in the body has to be suspected. Prostate cancer cells that have spread to other areas also leak PSA. Even if we cannot find the areas of spread with scans or other tests, the presence of PSA means that the cancer is present. If PSA is detectable (i.e. 0.2ng/ml) after surgery, then this means that some prostate tissue (prostate cancer) remains in your body. This could be at the site of the prostate surgery, in the lymph nodes or elsewhere.


CONTACT doctor's office IMMEDIATELY IF YOU ARE EXPERIENCING ANY OF THE FOLLOWING SYMPTOMS:

* Temperature over 101° F
* Urine stops draining from your catheter into the drainage bag
* Any pain so excruciating that pain medication is not relieving it
* Large amount of blood clots in urine.
* Bladder spasms that are not relieved with pain medication

qjenxu
Regular Member


Date Joined Sep 2009
Total Posts : 187
   Posted 10/26/2009 1:20 PM (GMT -6)   
Bring loose fitting pants such as drawstring sweat pants, jockey brief underwear, and a loose fitting shirt to the hospital to wear home when discharged. Your abdomen will be distended and you do not want clothing that will rub against your surgical wounds.

by geezer99

qjenxu
Regular Member


Date Joined Sep 2009
Total Posts : 187
   Posted 10/26/2009 1:21 PM (GMT -6)   
My surgeon took a different approach on some of the points. I understand it reflects some newer thinking.

Most significant regarded pain medication and diet.

We used fewer opiates and more anti-inflammatory medications. Opiate-based pain killers cause constipation which require more of a liquid diet. I was on solid food six hours after surgery. No problems. In some people opiates can cause withdrawal symptoms, including more severe depression.

We had no antibiotics after release from hospital, and would only use them if a fever was present.

Using only Motrin and experiencing only a slight increase in pain from opiates (I have had to major surgeries, unrelated to PCa when I was younger) I was able to eat solid foods as desired.

I was also authorized to lift light weights, using up to 10 lb. dumbbells. Hernia is a concern here. I found 8 pound dumbbells comfortable. I'm also encouraged to stretch.

Two weeks after surgery I feel close to normal. Perinium swelling has gone down, and pain is minor. I walk 4-8 miles a day at a very fast pace, look forward to steps and stairs, and lift light weights three times a week.
y

by OBB

O Buddy Boy
Regular Member


Date Joined Oct 2009
Total Posts : 106
   Posted 10/26/2009 8:58 PM (GMT -6)   
Right after surgery I was real sore and could not stretch much. The abdomen is the center of all movement. It's sore, the body protects it by increasing rigidity in the muscles, and the catheter and JP bag didn't make things easier.

Every day I had a goal. Get out of bed with assistance. Then walk. Then get out of bed without assistance, etc.

It took four days before I was limber enough to clean my own backside (that was the worst part and NOBODY ever told me about THAT!) Things got better every day.

Two weeks and three days after surgery I am as limber or more limber than before surgery.

I sit on the floor, knees straight and grab my ankles for two minutes. I stand on an incline board to stretch my calves for two minutes. I put each leg on a ballet-style bar and work on touching my chin to my knee for two minutes. I also work on lateral stretches where I move sideways and grab my knee.

I also lay on the floor and bring my knees up above my navel. I also do a semi-crunch, lifting my shoulders just high enough to grab my knees. I hold that for five seconds.

I walk as fast as I can. Right now that is around a 4 MPH pace. It seems to have the same cardiovascular effect as I had riding my bicycle at around 15 MPH.

Prior to surgery I was very active. I competed in events, but I was prone to injury due to overexertion. I hope I can use this activity to put me in better shape than before.

OBB

Post Edited By Moderator (James C.) : 10/27/2009 8:57:50 AM (GMT-6)


STW
Regular Member


Date Joined Jun 2009
Total Posts : 292
   Posted 10/27/2009 11:13 AM (GMT -6)   
Walk.
No one mandates that your walking be all at once. Two laps, one in the morning and one in the afternoon, will do you as much good as two in the morning and be easier on you.
Two pairs of underwear can work as well as a pad when leakage slows down and can help your psyche because you are off pads that much sooner.
Diagnosed at 54
PSA 8.7
Biopsy 1/7/09
4 of 6 cores positive, one at 90%
Gleason 3+4=7
Neg bone scan 1/15/09
One shot Lupron Depot 1/27/09
Tax Season
RP 4/29/09
Neg lymph nodes, postive seminal vesicle, 1 positive margin
Gleason 3+4=7 with tertiary 5
Catheter out at 2 weeks no nighttime incontinence
Pad free week 5
PSA 6/6/09 <0.1
PSA 9/10/09 <0.1


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 10/27/2009 11:48 AM (GMT -6)   
in another thread, English Alf said:
Steristrips were mentioned, but Watch out! You may have an adverse reaction to the adhesive

My wounds were stitched (not stapled) and covered with plasters, all but one of which had been taken off by the time I came round from the anaesthetic. I was told before the op to make sure that all plasters had been removed within 24 hours. The wound left when they removed the drain was kept closed with a steristrip, but this very quickly started to itch and then when I pulled it off discovered I had pulled off my skin as it had caused blisters. (It was sore and painful for several days.)



Not really post op care, but I didn't see any mention of the position in which your body is put for the Da Vinci operation, and this does have a relevance to how you may be after the op. I was packed in foam padding etc and lain with my head below my feet at an angle of 45 degrees. This is so gravity can help move the intestines etc away from the operation site. A side effect of this is the extra blood flow to the head thus we were told (And partners were warned) that after the operation you might have a very red and swollen face, nose or lips. As it happens I did not, but they do not like partners not to know this might happen. It goes away after a few days.



Also saw so mention of the left over gas. CO2 is pumped into the abdomen to blow it up to make space for the surgeons to see. I was told that after they sew you up some of this gas will remain trapped in the abdomen. During the first week this gas will migrate through your body towards the tops of your shoulders while it is being absorbed, and it can cause shoulder pain, especially if you do not walk about enough. In my case it was also possible to feel hundreds of little bubbles just under the skin above my ribs if I pressed there - really weird! Another reason to walk about a lot. I still had bubbles about the place at the time they removed the catheter



And with regard to the many strange changes that happen to the penis don't forget to mention that as well as shrivelling, it may twist about or rotate along its own axis from time to time so that when you look down at it you may see it sideways on. My testicles also seem to hang lower than before and the vas def etc inside my scrotum was a little tender, but that is no doubt due to the vas def being severed further up.



I am a great fan of Dettol as a disinfectant, (My father, who was a doctor/surgeon/obstetrician etc was one of the first people in the world to use it) I thus have a spray containing a dilute solution iof Dettol in water that I make up myself and this was very useful to spray on my wounds and genitals in the early days when I was washing to help keep things extra clean. Also used it every time I washed my hands.
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP 110gms.- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
24 mts: PSA's: .04 each test since surgery, Bimix .3ml PRN or Trimix .15ml PRN

Post Edited (James C.) : 10/27/2009 12:19:16 PM (GMT-6)


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3743
   Posted 10/27/2009 12:17 PM (GMT -6)   
He's my list.
1) Never tuck your undershirt into your briefs if you are wearing pads. It will inevitably touch the pad and wick up onto your abdomen.
2) Always, always make sure the pad is stuck firmly to the bottom of your underwear. If it ever folds over, the sticky side will firmly attach to your "naughty bits" resulting in a painful Argentinian Wax job (Similar to a Brazilian Wax job but lower.)
3) Incontinence and ED have never killed anyone. PCa has. Just do it!
4) Even though your wife says it is ok to walk around the house in your underwear dribbling pee, It's not. Try to look as normal as possible.

And finally for the Single guys.
5) Don't be discouraged. There are plenty of women out there who want a loving relationship without all the mess. Stay clean, healthy, and flexible, and you'll move to the top of the list.

Jeff
DX Age 56. First routine PSA test on April 8th: 17.8.
May PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, Gleason 6=3+3. Bone scan and C/T scan negative.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7 Tumor size: 2.5 x 1.8 cm location: both lobes and apex. No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Extraprostatic extension present; Perineural invasion: present, extensive
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 10/05 10 weeks, Still no activity
Incontinence - 8/20 4 full pads per day
. 9/7 3-4 full pads per day (I'm going to try cutting down on fluids. Bad idea. I know.)
9/17 2 months: Still 3 pads per day.
10/5 10 weeks: Still 3 pads per day. At this rate I'll be fine in 2012.
Post Surgery PSA - 9/3 6 weeks- 0.05, 10/13 3 months- 0.004 undetectable.


English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2218
   Posted 10/28/2009 3:45 AM (GMT -6)   
A few more:
Think about what things will be difficult or inconvenient to do, thus...
 
Toothache:
I fitted in an extra visit to the dentist before surgery rather than risk developing bad toothache the week after! An electric toothbrush is easier to use than moving your arm back and forth for two minutes. And floss. (I shared a room post op with a 72 year-old dentist who still had all his teeth and no fillings) 
 
A hair cut.
You might not fancy either sitting in the barber's chair or chatting to him about how you are. And a short hair cut will also make it much easier to dry your hair after surgery when rubbing your head with a towel will really make things ache.
 
Getting out of bed post op.
Make it easy for your abdomen by doing it the way very pregnant women do. Lie on your side with your knees jusy hanging over the bed then push your upper body to the vertical using your arms and let your legs swing down to act as a counterweight at the same time. Then pause in the sitting position, then stand. maybe put a chair by the bed to lean on. (And hold onto something like the door frame when doing those initial gentle stretching exercises.)
 
Shower.
If you've enough space so that it doesn't become an obstacle, then a plastic chair to sit on in the shower can be handy. And get your partner to help you wash.
 
Relaxing.
You may find it difficult to do this. I found music was the biggest help and the best way was to fill my MP3 player with gentle (but also "happy") music and let it shuffle it around. This was especially handy to have in my ears at night when the catheter stopped me sleeping properly.
 
Other medical conditions.
Don't concentrate so much on the PCa that something else creeps up on you unnoticed.
EG. I have to have my moles checked regularly, and a couple have already had to be removed. So I made an extra appointment with my dermatologist to make sure that there was still no skin cancer. It would have been bad to put myself through surgery to try and stay alive, but with side effects, and then find out something else would have got me anyway long before the PCa could.
 
Don't be fooled into thinking that "when the going gets tough the tough get going". It's not about being tough, be wise:
the wise guy first makes sure he's going the right way, at the right speed, for the right reason, with the right information and has the right help!
 
Alfred
 


Age at Dx 48         No Family history  of Prostate Cancer

Married 25 years, and I cannot thank my wife enough for her support.

April 2009: PSA 8.6  DRE: negative. Tumour in 2 out of 12 cores. Gleason 3+3.

RALP (nerve-sparing) at AVL-NKI Hospital Amsterdam on 29th July 2009. Stay 1 night.

Partial erections on 1st and 2nd Aug 2009, Catheter out on 6th Aug 2009. 

Dry at night, but wearing pads 24/7

Post-op Gleason 3+4. Seminal Vesicles invaded, but otherwise negative margins,

Erection 100% on 15th Aug 2009   Stopped wearing pads on 21st Sept 2009

Pre-op style intercourse on 24th Oct 2009 !! No use of tablets, jabs, VED etc.

 

Post Edited (English Alf) : 10/28/2009 3:03:10 AM (GMT-6)


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3743
   Posted 10/28/2009 9:16 AM (GMT -6)   
I got a couple more.

1) Exercise and get in shape BEFORE the surgery. It will never be easier. Think Rocky - only you're fighting for your life.

2) Carry a pee pad in your shirt pocket as well as your pants. When you drop trou' in the the stall, you'll only be able to reach the one in your shirt. Reload with the spare you have in your pants.

3) When you wear a diaper, lined with a guard, with a half Poise pad boost, you present quite a handsome package for the ladies. Don't feel guilty about it. They've been stuffing their undies for centuries. Now it's your turn.

Remember #1 You've got a few months between diagnosis and doing something about it. Get busy. Forget about your lawn, your cousin's house, and all your sister's problems. You just became your #1 priority. (But don't forget about your wife - you'll need her support more than you can ever know.)

Jeff
DX Age 56. First routine PSA test on April 8th: 17.8.
May PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, Gleason 6=3+3. Bone scan and C/T scan negative.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7 Tumor size: 2.5 x 1.8 cm location: both lobes and apex. No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Extraprostatic extension present; Perineural invasion: present, extensive
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 10/05 10 weeks, Still no activity
Incontinence - 8/20 4 full pads per day
. 9/7 3-4 full pads per day (I'm going to try cutting down on fluids. Bad idea. I know.)
9/17 2 months: Still 3 pads per day.
10/5 10 weeks: Still 3 pads per day. At this rate I'll be fine in 2012.
Post Surgery PSA - 9/3 6 weeks- 0.05, 10/13 3 months- 0.004 undetectable.

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