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Telemando
New Member


Date Joined Jan 2011
Total Posts : 10
   Posted 1/5/2011 10:59 AM (GMT -6)   
Hello everybody.

The last 6 months have been an emotional roller coaster for me! I had my RRP just 15 days ago, my catheter came out today... and I need a hug.

It's my 57th birthday in a few days.

I first asked for a PSA blood test in 2008, after hearing an article on the Woman's Hour radio show. It wavered up and down for 18 months until a year ago when it finally clocked over 5, but co-inciding with some nasty bacterial prostatitis. I had a biopsy in July 2010, quickly followed by an MRI which didn't show anything unusual.

I was initially scheduled for surgery in Sept 2010, but this was delayed (twice) due to my having very high blood pressure. This was eventually tamed and I had a robotic radical prostatectomy just 15 days ago (21st Dec 2010), and my catheter removed today. Apart from running to the loo every hour and voiding dark bloody urine, this part seems to have worked ok and I seem to have no leakage (I hope).

I seem to have fretted over every stage of this process (hence the high blood pressure), and despite being told I have early stage cancer, I'm worried that the surgery won't have cured me.

Tell me, is this normal? Does it get any better? Can I have a hug please?
05/2008 - 12/2009 Varying PSA between 4.0 and 4.9
04/2010 - PSA 5.2
05/2010 - PSA 5.6
07/2010 - 12 needle biopsy: 4/6 positive 3+4 right side, negative left
07/2010 - Followup MRI scan showed no abnormality
12/2010 - Robotic RP
5/1/2010 - Catheter removed. No leakages (yet)!

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 1/5/2011 11:10 AM (GMT -6)   
Welcome to HW. It's normal to worry. We all worry about everything at first, and I can tell you that any worry is normal. We all have different things to adapt to, so that's one reason we sometimes call our stories here our journey. You have walked a good bit on one side of the path, but now have crossed over to the other side- post surgery recovery. As you move along that, you should start to improve, gain strength and start to feel 'normal'- whatever you definition of it is-.

I do have some practical tips. You can expect blood, bits, junk and gunk passing in your urine. All normal. As is the urge to go frequently. Your inside have been sliced and diced, then stitched back together, so it will be some time for your leftovers to heal, the swelling to go down and your body connect your brain back in some order. That urge to pee so often is common for us, nothing out of the ordinary at all and the impulse will decrease as you heal and the new stimulation s that trigger it settle down. So all of that is normal for now. I suggest that you drink as much water as you can tolerate, you need to flush out toxins, leftover drugs and the residue of healing. In addition, begin to walk. Do a little the first day, then increase both the frequency and length. Water and walking will do wonders in how you feel, will stimulate your bowels, and the rest of your body. You really need to get at it now, if you haven't already. Don't be alarmed with blood in the urine or clots or chunks, etc. You can probably expect to see some blood in urine for up to 3 months. Unless there ic very large amounts of bright red blood, then what you see is the normal effect of cutting and stitching. A few little drops of blood in urine can be dramatic, so it's ok if it happens.
James C. Age 63
Gonna Make Myself A Better Man tinyurl.com/28e8qcg
4/07: PSA 7.6, 7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS6
9/07: Nerve Sparing open RP, Path: pT2c, 110 gms., clear except:
Probable microscopic involvement-left apical margin -GS6
3 Years: PSA's .04 each test until 04/10-.06, 09/10-.09, 01/11-.09
ED-total-Bimix 30cc

Post Edited (James C.) : 1/5/2011 9:47:31 AM (GMT-7)


Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 1/5/2011 11:22 AM (GMT -6)   
Hi Telemado,

All in all, I'd say you were as 'normal' as apple pie on a summer day at the lake --- at least a normal summer day at the lake for our family when the wood stove is kept busy churning out my wife's legnedary apple pies!

Let's face it, you don't hear the word 'cancer' out of your doctor's mouth without wondering if you should be putting the local funeral home on speed dial and cleaning out the top drawer of your desk while you're still able. Life doesn't come with any guarantees, except at some point we're all going to die. When is the question. And, for all of us, PCa may get us. However, if you want to place bets and make money doing so, you don't want to bet on PCa winning. I'm not saying it isn't a worry, but so too is getting whacked by a bus, being gunned down by a passing road rage motorist, or dropping of a heart attack.

What you must do is put your PCa into perspective. I assume your Gleason is 3+4. All on one side. Others here will be better able to comment, but I think you probably should be worried more about that high blood pressure than about the PCa. You had a problem. It was treated. You're way better off than a lot of your friends your age who are going around today with PCa untreated and don't know anything about it.


Putting PCa into perspective isn't easy. It's probably not unlike being involved in an airplane crash, walking away, and then facing up to getting on another airplane. The shock of what happened would tend to dominate any reasonable putting the next ride into perspective as the door closed and the pilot pushed back from the gate.

Your worries were no different than mine two weeks after evisceration. And, everytime I go for a post op PSA I worry some. But, I worry less now than I did. Bit by bit I'm putting my PCa threat into perspective. You will too.

Consider yourself hugged.

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
From "knock out" to wake up in recovery less than two hours.  Actual surgery 70 minutes
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
 
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
 
First post op PSA Sept 09  less than 0.02
PSA on Oct 23, 2009 less than 0.02
PSA on Jan 8, 2010  less than 0.02
PSA on April 9, 2010 less than 0.02 
PSA on July 9, 2010 (one year) less than 0.02
  

Putt
Regular Member


Date Joined Aug 2010
Total Posts : 154
   Posted 1/5/2011 11:27 AM (GMT -6)   
It sounds like you are having an excellent response to your surgery, with no leakage. Usually we all go thru a period of drips that are troublesome, which may or may not be resolved within a few weeks. You are one of the lucky ones. Be sure to ask your doctor for a copy of the pathology report, as it is very important information that is used to help determine if and/or when future treatments might be necessary. In the mean time, relax, put it our of mind, and let the body heal. Even with Robotic RP, internally there is massive trauma that will take time to completely heal. Sorry that you had to join this men's club, but you can count on everyone here is wishing you total success and the best of a great New Year.
PSA at Dx 105 at age 68, 4/04. ADT (Lupron only), RRP, 5/04. Gleason 4+5=9, Staged pT3bc NO MO, 3D rad, 40 treatments, 8/04. PSA 1/05 <0.01. ADT till 7/07. PSA 0.03 12/08, 0.07 4/09, 0.13 8/09, 0.19 12/09, 0.30 4/10, 8/10 0.42, 12/10 47. Will start ADT3 after PSA reaches 1.2.

TTaylor
Regular Member


Date Joined Nov 2010
Total Posts : 102
   Posted 1/5/2011 12:57 PM (GMT -6)   
Sounds like you are doing fine and right on course for a speedy recovery. Considering many of the signatures you will see on HW yours is extremely encouraging considering we are talking about pc. Hang in there and know it does get better with time. You are among friends and we wish you the very best. Keep us posted on your recovery.
TTaylor
Age 67. Robotic prostatectomy 10/26/2010, due for RT in Janury 0f 2011. Eight of 12 lobes positive. Gleason Score 4+4=8, Margin envolvement was present with adipose tissue invasion and perineural invasion, glandular and stromal hyperplasia present,pT3 pNO and no evidence of metastatic adenocarcinoma. 1st psa after surgery Nov. 24, 2010 was .3
HT started Nov. 24, 2010.

knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 1/5/2011 2:06 PM (GMT -6)   
Telemando, it sounds like you got off to a rough start with prolonged anxiety during your diagonsis. Glad that you got the RRP behind you and you are in a small group of people who begin their prostate free life with continence. That's great as it is an issue that troubles most of us to varying degrees. I hope your pathlogy report was good too. Now you can join the psa anxiety club that all of us have as we wait for the next psa test. Hopefully you will be getting all zeros. That it easy for a while and do some waking if you can. In 4-6 weeks you should be feeling pretty good!
Ron
06-08 1st biopsy neg psa 4
10-09 psa 5.5 2nd biopsy 1/12 pos. 10%, G(4+3) age 65
12-15-09 RRP Tulane NOLA Dr Lee
Path, 1%, clr marg, no EPE, no SVI, nodes cl, G(4+3)
100% incontinent after 3 mo. PT
ED, pre-op severe, post op total
10/10 Dr Boone, Baylor recomended AUS
AUS and IPP scheduled 1/11/11
post op psa's 0.04,<0.1,<0.1,<0.01@12 mo.

medved
Veteran Member


Date Joined Nov 2009
Total Posts : 1100
   Posted 1/5/2011 2:36 PM (GMT -6)   
Telemando -- if it helps with the anxiety, you should know that (1) the huge, overwhelming majority of men see the sort of side effects you are describing get better / disappear over a period of months, and (2) you are, statistically, VERY likely to die of something other than prostate cancer. (Regarding the hug, where is BRONSON when we need him?)

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3742
   Posted 1/5/2011 3:18 PM (GMT -6)   
Hey Telemando,

Wait! Let me get this straight. You had you catheter taken out 2 days ago and you don't leak??? If you tell me you're having nocturnal erections too, I'm coming over to your house with a baseball bat, Pal!

You are the textbook, mythical case that surgeons talk about. You're like unicorns and mermaids we've all heard about but never actually met.

I'd be honored to give you a hug. Maybe some of your good luck fairy dust will get on me. Please. (O)

Welcome to Healing Well!

Jeff (5 days to go before my sling surgery for incontinence.)
--------------------
56 @ DX PSA 23
7/21/09 DaVinci
All recent PSAs - <0.01 Incontinent with ED

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 1/5/2011 3:21 PM (GMT -6)   
Welcome aboard, you will fit right in. We all fight our own battles with the "worried" demons from time to time, kind of comes with the turf.

David in Sc
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 1/5/2011 3:30 PM (GMT -6)   
Telemando:  Wish I could figure out how to click in a group hug on here anyway know that all the guys are giving you a welcome and big hug.  Your in the perfect place to get the support you are looking for.  As the others have stated.  Your way ahead of the game if you are running to the toilet.  I was luck and mostly dry after the rubber snake was pulled. :)  Llike you it was frequent trips to pee, not uncommon at all. Yes king of gunky and a bit red from time to time as best as I can remember.  As you heal you will find the trips will get spaced farther appart.  I still after 2 years go more frequently to pee.  Not nearly like just after sudrgery. 
 
You will find that the guys here are willing to help and befrend you and even give you tips.  My tip for today is walk walk walk and walk some more.  I found that helped me heal and also helped me sort all this anxiety in my head.  Do keep us posted and will be looking for you to buy the beer when you get initiated into the zero club.  that is getting a 0 on your PSA test.
 
Cajun jeff

keysailfisher
Regular Member


Date Joined Dec 2009
Total Posts : 347
   Posted 1/5/2011 4:29 PM (GMT -6)   
Your about as normal as the rest of us.
 
Neal

Telemando
New Member


Date Joined Jan 2011
Total Posts : 10
   Posted 1/5/2011 4:49 PM (GMT -6)   
Thank you everybody for all your kind words. It's so reassuring to know that what I'm going through is quite normal and it's nice to be with friends who understand what's happening.

** Group Hug **

BTW, I get a PSA test in three weeks, and I'm seeing the surgeon in four weeks - which is when I expect to get the path report. Fingers crossed I guess. In the meantime, so many of you have suggested walking that I promise I will start tomorrow - even if it's just round the block to begin with. This time last year I was doing 30 mins a day vigorous activity on my Wii Fit - now a walk round the block seems impossible!
Age 56 (soon 57)
05/2008 - 12/2009 Varying PSA between 4.0 and 4.9
04/2010 - PSA 5.2
05/2010 - PSA 5.6
07/2010 - 12 needle biopsy: 4/6 positive 3+4 right side, negative left
07/2010 - Followup MRI scan showed no abnormality
12/2010 - Robotic RP
5/1/2010 - Catheter removed. No leakages (yet)!

stevmac1
Regular Member


Date Joined May 2010
Total Posts : 129
   Posted 1/5/2011 5:03 PM (GMT -6)   
Telemando,
Welcome. And good luck with the upcoming tests. How about a high five?
steve
50 Yrs. old. DX Feb, 2010 w/6.6 PSA.
Biopsy 04-24-10, Gleason 3+3=6
4 of 5 cores left side inv. 4 of 6 rt side
RRP 06-07-10....
16 days post-op, catheter out.
Gleason upgraded to 3+4
Totally continent @ 8 weeks post-op. (!!!)
1st post-op PSA @ 12 weeks - <0.05
2nd " " " @ 6 months - <0.05

tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2845
   Posted 1/5/2011 5:13 PM (GMT -6)   
Somebody said...
(Regarding the hug, where is BRONSON when we need him?)


telemando:
- HW is a great patient-patient support - and you sound like you are progressing well in this confusing journey of PCa.
- wishing you all the best.
-hugs
BRONSON

p.s.I am known for my hugs

MrGimpy
Veteran Member


Date Joined Jul 2009
Total Posts : 504
   Posted 1/5/2011 5:18 PM (GMT -6)   
The silver lining here is that your High Blood Pressure was diagnosed and with medication can never be an issue

The HBP is a far more serious problem that the PC was, now that your PC is gone so to is your HBP, you win on both counts

Walking as others have mentioned is paramount to your recovery, start slow, even just a few minutes a few times a day to start. Walking promotes healing and also aides in incontinence recovery

bsjoplin
Regular Member


Date Joined Feb 2010
Total Posts : 308
   Posted 1/5/2011 5:28 PM (GMT -6)   
hey, Telemando [do you have a real name, or is that it??]
hey, you're right now where a whole bunch of us have been..."is it normal?" well, we'd prefer to dodge that bullet, but we didn't and here we all are! "does it get better?" sure ! mostly better, occasionally there are rough spots in the road, but the main thing is you feel a lot better when you can find out we've gone thru this and there's a light on the other side...
if walking around the block is too much right now, hey, you've been through a BIG DEAL!  take a few laps inside the house and work up to what you can!
check in now and then and say howdy, and keep us posted on how your numbers are doing...it's a club you'd rather have to avoid, but since you're here, enjoy it
and as far as the hugs are concerned, i learned they are plentiful and deep-meaning when you go thru AA...and you bet, this is recovery too! so BIG HUG from me too!
bob
Age@dx:55
5/05 PSA:1.8
12/07 PSA:3.7
7/08 PSA:4.7
8/08 Biopsy#1:3 of 6 irreg
11/08 PSA:6.5
12/08 Biopsy#2:of 12,3 cancer,other 9 irreg;Gl:3+3=6
1/22/09 RRP
1/25/09 Released
1/28/09 Path: PCa on 10%, lymph & SV benign, Gl:3+4=7,stage T2c
2/13/09 PSA:0.1
6/09 PSA:0.1
10/09 PSA:0.1
2/10 PSA:0.3
4/10 PSA:0.4 Referred to RO
5/4/10 First RT
6/25/10 Final RT;ended up 36 treatments,64.8 Gy.
8/10 PSA:0.2
11/10 PSA: 0.1

Telemando
New Member


Date Joined Jan 2011
Total Posts : 10
   Posted 1/5/2011 5:29 PM (GMT -6)   
To steve: ** High Five **

To Bronson: ** Group Hug **

To MrGimpy: Good point about the high blood pressure, which is currently being controlled by medication, and for which I will see a Cardiologist shortly. If it hadn't been for the PC, the blood pressure would not have been known about and I could have dropped dead from a stroke or heart attack. With any luck I may have dodged two different bullets ;-)
Age 56 (soon 57)
05/2008 - 12/2009 Varying PSA between 4.0 and 4.9
04/2010 - PSA 5.2
05/2010 - PSA 5.6
07/2010 - 12 needle biopsy: 4/6 positive 3+4 right side, negative left
07/2010 - Followup MRI scan showed no abnormality
12/2010 - Robotic RP
5/1/2010 - Catheter removed. No leakages (yet)!

tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2845
   Posted 1/5/2011 5:34 PM (GMT -6)   
telemando- I forgot to ask -have you got your pathology report back?
thanks for the hug back
hugs again
BRONSON
Age: 55 - gay with spouse of 14 years, Steve
location: Peterborough, Ontario, Canada
PSA: 10/06/09 - 3.86
Biopsy: 10/16/09- 6 of 12 cancerous samples, Gleason 7 (4+3)
Radical Prostatectomy: 11/18/09
Pathology: pT3a -Gleason 7 -extraprostatic extension -perineural invasion -prostate weight -34.1 gm
PSA: 04/08/10 -0.05 -Zero Club
PSA: 09/23/10 -0.05 -Zero Club
PSA: 03/12/11 - TBA

Telemando
New Member


Date Joined Jan 2011
Total Posts : 10
   Posted 1/5/2011 5:37 PM (GMT -6)   
Hi bob/bsjoplin.

I do have a real name and it's also Bob! What are the chances?

I live near Bristol in the UK.

"Telemando" is the type of electric mandolin that I play in a small band. It's a beautiful instrument and I thought it would make a good user name.

The registration page for the forum gave dire warnings about using one's real name, so I avoided giving it out. I now see that the things are a little more relaxed in practice, so I'll sign myself as ...

Bob
Age 56 (soon 57)
05/2008 - 12/2009 Varying PSA between 4.0 and 4.9
04/2010 - PSA 5.2
05/2010 - PSA 5.6
07/2010 - 12 needle biopsy: 4/6 positive 3+4 right side, negative left
07/2010 - Followup MRI scan showed no abnormality
12/2010 - Robotic RP
5/1/2010 - Catheter removed. No leakages (yet)!

Telemando
New Member


Date Joined Jan 2011
Total Posts : 10
   Posted 1/5/2011 5:42 PM (GMT -6)   
Hi Bronson

No pathology report yet. I'm due for a PSA in three weeks, and I'm seeing the surgeon in four weeks. I expect to get the pathology report then. Prior to the operation, the surgeon thought it highly unlikely that the path report would have any bad news and so I wouldn't need any further treatment, but of course it's yet another thing to worry about.

As I explained to another bob (bsjoplin), my given name is Bob and I'm happy to be called by that name.

Bob
Age 56 (soon 57)
05/2008 - 12/2009 Varying PSA between 4.0 and 4.9
04/2010 - PSA 5.2
05/2010 - PSA 5.6
07/2010 - 12 needle biopsy: 4/6 positive 3+4 right side, negative left
07/2010 - Followup MRI scan showed no abnormality
12/2010 - Robotic RP
5/1/2010 - Catheter removed. No leakages (yet)!

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7084
   Posted 1/5/2011 6:55 PM (GMT -6)   
Telemando,
 
Some of us have to stay anonymous - just the nature of the internet. But I'll add a Welcome, and sure - a hug as well. It has been a few years since I was last in the UK - enjoyed many trips there.
 
Yes, sounds like you are doing great. I will add the caveat that any time you are concerned, check in with your urologist - this is the time period when it is better to ask first,
 
As to walking - the first few weeks it was all I could do to walk a quarter-mile total to the community mailbox and back, and it took an hour with a cane. It's over a year now, but I can do two miles in an hour every day without pushing myself. The trick for me was several short walks, each followed by a round of kegels. One things settled down, I lengthed the walks, and reduced the number. Just keep doing the kegels - small numbers, at intervals through the day. As you walk more, you may leak a little, so don't worry too much about that.
 
Welcome again -
DaVinci 10/2009
My IGRT journey (2010) -
www.healingwell.com/community/default.aspx?f=35&m=1756808

Highwayman
Regular Member


Date Joined Sep 2010
Total Posts : 148
   Posted 1/5/2011 11:34 PM (GMT -6)   
Bob,
hugs right at you buddy. Patience is the biggest thing you need right now. Many trials and issue shall come your way in the next few weeks. It gets better. keep the faith.
Mike
Age 48 w/diagnosed
10/06 PSA 3.0
11/06 PSA FREE %13.2
10/07 PSA 3.4
12/07 Biopsy-neg
1/09 PSA 4.6
6/09 psa 5.8
2/10 psa 8.7
7/10 PSA 10.8
8/2010 3rd biopsy GG 3+3=6, one of eight cores -2%
Lap 10/22/10 Dr. Troxel
Path- Neg Margins, Gleason 6, Nerves spared, 85 gm
Cath out Nov 2, Dec 2nd 2 pads/day
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