post RP 3 mos. still way low energy, moving slow, is it me, or what?

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Englishteacher
Regular Member


Date Joined Jan 2010
Total Posts : 28
   Posted 1/28/2010 8:04 PM (GMT -6)   
RRP in November technically all went well. Pathology, some good news some not so. I'm ready to take each development as it comes; however,although there are no evident complications from surgery it continues to be slow for me. Mostly very low energy, hard to concentrate and woozy with some lingering minor aches and pains in nether regions. I'm ready to move ahead with what ever this will all bring me, but I wish I would be feeling physically better so my perspective looking ahead would be more balanced.
Irrespective of prognosis, I read about guys after surgery physically back to work in a month and playing golf, I have not yet moved too far beyond crossword puzzles. What's frustrating to me is as I continue to feel kind of "ill" in recovery it's hard to feel "cured" even for the time being. I'm told by some that the effects of general anesthesia can stay with you for months, could this be playing a part? Am I the only frustrated guy waiting impatiently to be feeling back to "myself" this far out from surgery or is all this just part of the package one might expect? I do not wish to appear self-absorbed with my own well being, more just trying to get my mind around what to expect as I move forward.
Thoughts and advice here have been most helpful.

pigeonflyer
Regular Member


Date Joined Nov 2009
Total Posts : 85
   Posted 1/28/2010 8:18 PM (GMT -6)   
hey teacher dont get frustrated because that lets pc win mentaly. move through the day with what your body lets you do. listen to it. you just had a serious surgery. some heal faster than others, just take your time with this. send a signiture with your post. good luck. neil
50 years
da vinci on 9/28/09
gleeson 3+3
psa before surgery 5.1 oct/09 psa 0.06
cather out on oct 5, back in on oct 5
two more trys for cather out, still in .
cather out nov. 13/09
cystocope nov.13/09 , cather back in , out again on nov 15/o9, was taught to self cath, still pluged with scar tissue but no cather. have to self cath 6 to 8 times a day. scar tissue removed on jan. 11 2010. no cathing and totally dry. 


60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2243
   Posted 1/28/2010 8:25 PM (GMT -6)   
EnglishTeacher,
When I researched tx options one of the criteria was recovery time. I also wanted my prostate removed. I chose robotic surgery after much research. That was last May and now I am getting a daily dose of IMRT. So what I expected and what I got were not the same.
 
There was a video about the robotic surgery with an interview of a client at the facility that I used with the same Dr. as well. The client was seen leaving the hospital the next morning raising his hand above his head in a victory salute, and then again at the 3 week mark where he said he was 80% of where he was prior to surgery. I remembered thinking that if he could do all that in 3 weeks that I could do better because I was in such good shape.
 
None of it worked out the way I wanted to, and really you are doing better than I was at that point. It takes time and it doesnt happen on our time schedule.  One friend of mine said it took him a full year. PCa is both emotional and physical and all I can do is the best I can do. Wish you the best and congrats on the good path report.
Michael
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
Margin slightly involved
2 pads per day, 1 depends but getting better,
8/5 1 depend at night only, now none
 started ED tx 7/17, slow go
Post op dx of neuropathy
3 months psa.01, 6 month psa.4, 6 1/2 month psa.5
Starting IMRT on 1/18/10
Great family and friends
Michael


spottydog10
Regular Member


Date Joined Dec 2009
Total Posts : 348
   Posted 1/28/2010 9:15 PM (GMT -6)   
Hi ET,
I had my robotic 7 nov and went back to work this week.
I am pretty knackered it must be said but hope it will get easier as I get used to it.
Also I go the gym 4 times a week and walk quite a bit.
I still have lingering aches and pains at times.
Some walking might help to get your enetgy levels back up.

Cheers,
Mike
Age 51
PSA 5.5  june 09
biopsy july 09 gleason 3+3 = 6   5% and 50% in 2 of 12 cores
robotic prostatectomy nov 7 prostate weight 45gm
path report due 8 jan 10
post op psa 22/12/09, 0.04
no incontinence after 7 days
total ed

 


cocrgolfer
Regular Member


Date Joined Oct 2009
Total Posts : 171
   Posted 1/28/2010 9:27 PM (GMT -6)   
Hi English teacher,

You know, you might have hit on something with the prolonged effects of the anesthesia. I had my surgery in mid-October and my lungs didn't feel right until a week or so ago. I was using an inhaler to get rid of the feeling of tightness and reduced breathing capaticy. And I am certainly not back to pre-surgery energy levels. That I attribute to the constant struggle with incontinence, a nasty two week cold, and now blood in the urine which is a UTI and antibiotics. But apart from the latter two infections, I know my own physiology well enough to know that the aches and pains and low energy are coming from a contiuation in the healing process. It's going to be a while more for me. You are not alone with your experience and I guess each of us just goes along at his own pace.

Steve

MaxBuck
Regular Member


Date Joined Jan 2010
Total Posts : 75
   Posted 1/28/2010 10:15 PM (GMT -6)   
The comments about anesthesia seem right on to me. I was fortunate in that my anesthesiologist elected to give me a spinal, in which I was awake (more or less) throughout the procedure. The docs said the side effects from the spinal would be minimal; they seem to have been correct. Among other things, no need for a breathing tube or other paraphernalia that could affect lung function post-op. Also I was given a spirometer (encourages full exhale) for breathing exercises and badgered so I'd use it every hour for the 3 days after surgery. I think that was a big help too.
Dx at age 56: Oct 09; PSA 5.8, followed up by 9.9 two weeks later (reproducibility of test - ?)
Biopsy ind cancer in 8/12 cores: Gleason 8 (4+4)
open radical retropubic prostatectomy Dec 4 09
Post-op pathology: 56 g weight, cancer in 21%, Gleason 7 (4+3, tert 5); margins clear, no lymph node involvement (0/9), perineural invasion present, T2c N0Mx (but showed clear from distant metastasis in pre-op bone scan and CT scan)
Continence data: 1 "panty liner"/day, with minor leakage when I get up from long seated position
ED pretty complete: some erection possible but current non-functional


Redman55
Regular Member


Date Joined Jan 2010
Total Posts : 87
   Posted 1/28/2010 10:51 PM (GMT -6)   
I had DaVinci Nov 4, 2009. Released two days later. Catheter for 8 days. I just played a weekend of golf in Fla last weekend and feel excellent as DaVinci is as non-invasive as it gets.. Incontinence is improving to maybe 3 pads through 24 hours or less. A lot of walking has been great for energy although leakage still happens then.

ED therapy in full swing with ed pills, pump, and just started trimix.

Overall, my energy has been very good. I think exercise and full vitamin supplements are important. As in every aspect of this, everyone is different on outcomes.
PSA 8/2009 5.6 Gleason 8
DaVinci surgery 11/2009
Pathology - totally contained in margins -one bundle spared
PSA now undetectable
Continance: Night and morning fine; mid day onward still not there yet.
Trying Trimix


brainsurgeon
Regular Member


Date Joined Jul 2009
Total Posts : 137
   Posted 1/29/2010 1:42 AM (GMT -6)   
We are all different. For two months post Robotic, I was totally discombobulated. Up at about 4 AM, back for a nap at 10-11 AM, up in an hour or so, back for nap of another hour about 3-4 PM, and then to bed about 9 PM. Best sleep that I have ever had, but a lot of it. It resolved back yo my normal rhythm in about 6-8 weeks. The afternoon nap went first, then the early rising, and last the morning sleep. Anesthesia and surgery are a real stress to which we all react in various ways. Robotics fools you because you have band aids on, but the stress on the body remains in large part. Time is the healer here.
70 years old (1939) USA citizen
Prostatic carcinoma dxed June 2009 by PSA (7.0) and then Bx
PSAs yearly since 2001 ranged 1.52 to 7.0. Doubled from 3.5 to 7.0 in one year.
Neg. CT and Bone Scan
4 of 8 biopsies positive (all right side) Gleason Score 3+4=7
Robotic assisted total prostatectomy and node excision July 2009 in Luzern, Switzerland by Dr. A. Mattei in the Kantonsspital. New Gleason was 4+4=8
pT2c G3 pN0 (0/14)
Catheter out in 5 days (home in 3 days)
No incontinence
Positional neurpraxia in hip and knee resolved 90+% in 5 months.
Potency: beginning tumescence??? at 3 weeks post-op. Still happens at 3 months PO. Nearly usable one month later. At 5 mo. with 100 mg Vitamin V, pretty good. Now beginning 5 mg Cialis daily.
3month PSA less than 0.01
6 month PSA less than 0.01


mountain man
New Member


Date Joined Feb 2010
Total Posts : 10
   Posted 2/1/2010 2:32 PM (GMT -6)   

Englishteacher,

Agree with all other advice re patience and everybody heals at own pace. I've recovered pretty well physically since my RALP last Oct (little/no pain post-, incisions virtually gone, vigorous exercise 5-6 days/wk now) but have to say that I'm still not even close to 100% at 3+ months. ED hasn't improved much even with pills. Still have discomfort from time to time in groin area, including eurethra, but assume healing still going on down there. Mild but persistent stomach/intestinal cramping is my main issue (hoping due to limited gas-passing from fear of leaking).

Psychological part has been the tougher part, thinking every little pain or spasm means something bad (like I always felt 100% before this!? not) Although must say have gone from being completely consumed by pc a few months ago, to only thining about it a couple of time per day now, so that's progress!

You're not alone, man. Guessing your symptoms will improve in time.

Adaleus


DX age 56 
psa 4.0
biopsy Aug 09 gleason 3+3=6; T1C; 2 of 12 cores (40%/50%)
robotic prostatectomy 10/20/09, B&WH Boston 
path report gleason 3+4=7; T2C NX MX; 1.9 cm & 10%
perineural invasion but margins, sem ves & lymphs all neg
post op psa 11/23/09 - 0.0!
no incontinence after cath removal (confidence pads for 1 wk)
ed complete so far


lja3
New Member


Date Joined Oct 2009
Total Posts : 13
   Posted 2/1/2010 2:54 PM (GMT -6)   
Englishteacher,
 
Actually I am glad you wrote, as I have been feeling very similar to you.  I had RP on November 9, 2009 and have read so many posts about how easy everyone had recuperated from the surgery I wondered what was wrong with me.  Now, I see there are more writing about longer term discomfort than I have read before.  So, while I do not wish that on anyone it is good to not feel so isolated and alone. 
 
A few things have been said here that I would question, with most of my data having come from my own brother who is a surgeon.  First, I doubt anesthesia has much to do with anything you are feeling, as it mainly leaves the body within 24-36 hours after surgery.  Second, while da vinci is minimalized as being superior to open surgery, it is primarily superior for it's less invasive cutting to get into the body.  Once it penetrates the body, it is still heavy duty surgery and not much different from open.
 
I have been lethargic, in pain abdominaly, and lastly been hit with constant neck and shoulder pain with a fairly constant numbing of my left arm since surgery.  I am lucky I work at my own pace from home on the computer.  To this day I am on pain meds - some days more, some days less.  I hate them but need them. 
 
This Wednesday I am going to Minneapolis (I live just outside of Detroit) to see my brother and getting second opinions from doctors he has scheduled to look at me, primarily a urologist and an ortopedic surgeon since my back got so messed up from the position of surgery, which mine took 7 hours due to blodd loss complications
 
In closing, just know you are not alone.  I know it seems weird to have lingering affects.  My neighbor is 10 years older than me and had the same surgery 2 years ago and did play tennis without a problem 4 weeks after surgery.  We are all different.  We all need each other.  This is a good platform to ask questions
Larry
  • 55 years old
  • Diagnosed 8/27/09
  • PSA went from 1.2 to 3.4 over 18 months
  • Gleason 4+3=7
  • 3 of 12 cores positive
  • Cancer 5% of biopsied tissue
  • Perineural invasion not identified
  • Cat scan negative
  • Bone scan negative
  • Had da vinci RP on Monday, November 9th
  • Surgery took 7 hours, lost 2 liters of blood, transfused 2 pints 
  • No cancer found outside of prostate
  • Strong abdominal pain for 6 weeks post surgery
  • PSA on January 5th at 0.001.
  • Using 1 pad a day and 1 pad at night
  • Next check-up on May 5th


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2461
   Posted 2/1/2010 3:17 PM (GMT -6)   
Teacher,
I had the robotic surgery in Feb 09, I was in the hospital for one night. Once I got home I walked a little in my back yard. I kept increasing my walking distance and by the end of 1 week I walked 2 miles. Two months after surgery I started playing golf. The key for you is to to gentle walking everyday ang hopefully it will build up your stamina.
Age: 67 at Dx on 12/30/08
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed 2/9/09 Dr Fagin, Austin TX
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Posterior lateral lesions measuring 1.5 x 1.4 x 1.0 cm showing focal capsular penetration over a distance of 3mm in circumference.
Prostatic adenocarciroma accounts for approx. 10-20% of the hemisphere.
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx, Negative margins
seminal vesicles clean, lymph nodes: not dissected
continent after 4 months
8 weeks PSA test 4/7/09 result <0.1
5 months PSA test 7/9/09 result <0.1
8 months PSA test 10/9/09 result <0.1
11.5 months test 1/21/10 result 0.004


hb2006
Regular Member


Date Joined Nov 2008
Total Posts : 299
   Posted 2/1/2010 7:01 PM (GMT -6)   

EnglishTeacher

I think that everyone heals at a different pace. My PC Surgery recovery was really fast, discharged at 2 days after open surgery. Walking a mile the the next day and completely dry in 8 weeks.

But I had By-pass surgery in 2005 and knew what to expect. Although I shocked everyone with the recovery from that surgery, too. I had 5 by-passes and was back at work in 5 weeks. Was walking 5 miles a day before I went back to work.

My advice would be to walk as much as you can. Both surgeons stressed that to me.

Good luck

 

 

 

 


Age 60, PSA 2007 4.1, PSA 2008 10.0
Diagnosed April 2008, Biopsy: 6 of 12 cores positive, Gleason 4 + 5 = 9
CT and Bone Scan negative, Open surgery at Shawnee Mission Medical Center May 21, 2008
Right side nerves spared, Radical prostatectomy and lymph node dissection
Cather removed on June 3rd, totally dry on July 9th, pT2c, lymph nodes negative
PSA Sept 28, 2008 0.00, PSA Jan 22, 2009 0.00, PSA June 29, 2009 0.00
ED Status- Currently using Trimix, Levitra daily for increased blood flow.
Noctural Erections have completely returned on a nightly basis, same hardness as before.


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 2/1/2010 7:12 PM (GMT -6)   
At 9 months post surgery, I just put away the last of the Christmas decorations (you have to do it before candlemas) I was surprised that I had more stamina when putting them away than when getting them out a month and a half ago.

As with all such issues, ask your doctor -- he has a much better idea of a reasonable trajectory
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


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 2/1/2010 7:27 PM (GMT -6)   
Maybe we all have it to some degree. I find at 9 months that I just don't get as excited. Let the Christmas decorations wait. I'll get to when I get to it.

Don't go out on the barn and putter very much. Saturdays, after a little stuff in the morning, I'm ready to sit in front of the TV and loaf.

I think it is in my head more than my body. I'm just not as driven as I once was. Maybe I'm taking a little more time to smell the roses !
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01

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