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Open RRP Readiness and Recovery

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Prostate Cancer
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Posted 12/10/2006 11:27 PM (GMT 0)
I was diagnosed with prostate cancer in early Nov. After discussion with my urologist, i decided on an open RRP (I am at the Cleveland Clinic, which does both open and robotic RRP). Mostly because their experience is that the open RRP produces "marginally better results", and being relatively young, I want the best chance I can get for the long term (especially since long term robotic results for recurrence and survival just aren't available yet). Plus... open RRP is still the gold standard and I have a lot of confidence in my urologost at the Clinic in doing an open RRP. But enough of a preamble!

My question is for all you open RRP gentlemen...
1. I have a month before my surgery... what would you recommend I do now to prepare?
2. What can I expect as far as recovery? I am asking more in relation to pain, tiredness, and energy.

Thanks for any advice.
Posted 12/11/2006 1:15 AM (GMT 0)
Hi Reaseacher87,

No matter which type of surgery you have you should learn and practice the Kegel exercises starting as soon as possible. Because you are young, and probably in good physical condition the Kegels will quicken the pace of your recovery (regaining continuance). A daly walk will also be a good idea.

Surgery will be a shock to your system, and it will take a little time for you to regain stamina. Just use common sense, and give your body time to heal. We all mend at our own pace, don't push yourself. Good Luck on the 7th.

Glen
Posted 12/11/2006 1:42 AM (GMT 0)

Research-

I just finished week two after the surgery.  I feel pretty good and actually guilty thinking that I am going to stay home this week and just do computer and phone calls.  I did around no work my second week home.

My recovery was pretty good. One week with Mr. Folley and getting stronger everyday.  My stomach is still sore, constipated on and off,  barely leaking, and otherwise good.  I am a little nervous to go work with my sales team and hope that my stomach shrinks down a little so the slacks fit better.  I walk a couple of times a day.

Oh, sweat pant shorts work well with Mr. Folley.  You will welcome the second week with out HIM.  Talk about a good sleep.....

This is the best place, my doctor was so impressed with my questions because I was prepared from this forum.

JJK

54

Gleanson 3+4  after surgery.

Surgery 11/27/06 Memorial Sloan Kettering

Posted 12/11/2006 2:16 AM (GMT 0)
I had open RRP in June and am physically recovered.  I still have sexual function issues, but that can be expected at this point.

What I would suggest is to get in the best physical shape you can, especially core body exercises.  It will speed your recovery.  Another thing that helped me is to read the standard Prostate Cancer books by Scardino and Walsh and others.  It helps to know what to expect. 

What surprised me most was the uncontrollable urine flow after the catheter was removed.  I thought at the time that I would be incontinent and in diapers forever.  Urinary control rapidly improved and I didn't even make it through the entire box of Costco Depends. 

Give yourself time to heal and don't push the envelope--Easy does it but do it.

One further word, I know that a lot of guys are opting for robotic surgery, and there are reasons why it is likely to become the new standard for prostatectomy.  But the tried and true open RRP is an excellent choice for many of us.  I do not regret this choice, although I had the option to do robotic surgery. 

Cleveland Clinic is one of America's premier medical centers.  You are in good hands! Take care and keep us posted.

 

Posted 12/11/2006 3:31 AM (GMT 0)
Hi! ~ Researcher87,



Sending a warm welcome to you…. I’m glad you’ve joined us!!!



Buddy & I would personally like to share “Our Journey” with you. It’s just been popped back to the forefront for JayMan56.



Let us know when the day is of your surgery...okay!!



To answer your questions directly…

1. Read our posting “Our Journey”…. It truly has some good information along with other members postings to help guide you along. We can all help you if you let us.

2. a. Pain…. I’m a firm believer that the body heals a lot faster if pain is not present. So ~ we decided going in to this surgery that we would take pain med for at least a 5-7 day period. Buddy’s pain was very minimal. He listened to his body and he recovered beautifully.

b. Tiredness… Expect it!! But ~ sleep is a great healer. Get as much sleep as possible…. And in turn get as much exercise that you can too!!! Let your body do the talking and make sure you listen.

c. Energy… Take time to recover/heal and your energy will come back gradually.



Remember:

Don’t Push It…. Let your body heal

Don’t Lift…. Asking for trouble if you do! Just check out Spinbiscuit’s Threads if you don’t believe me. 2 hernia surgeries….you don’t want to mess with.

Listen to your body…..
Posted 12/11/2006 4:11 AM (GMT 0)
Bluebird - I believe Researcher said his surgery is January 7th! And,
{{{{WELCOME BACK BLUEBIRD}}}}
Posted 12/11/2006 4:51 AM (GMT 0)
Gotcha!!!!!!!.. I saw 1/07 and thought January 2007..... Thanks Lawink ;) on both!
Posted 12/11/2006 11:43 AM (GMT 0)
Researcher87:

I am your age and had open surgery early August at Hopkins. While no one knows how each individual will recover, all we can do is share our experiences.

Question #1: I'm sure your urologist/surgeon has a list of things you should do as you approach the surgery...pre-surgery testing, perhaps autologus donation of blood, etc. As far as comfortable clothing, I agree with JJK about the sweat pant shorts working well with the foley and with TimG about reading the Walsh book, Surviving Prostate Cancer, which contains excellent chapters on pre and post surgery information you will find helpful.

Question #2: As far as post surgery pain and stamina, you will have some discomfort during the first week. I took the pain medication whenever I felt uncomfortable. Believe me, it works. After a couple of days at home, I took the meds less frequently...started every four hours, then went to every six hours, etc. until finally I was at one pill per day. I took the last one day nine post surgery. When I stopped I still had about half of the prescription left which I took as a sign my pain recovery was better than most. Stamina gets better each week after surgery. It builds gradually. For me, I was at pre-surgery stamina four weeks post surgery. I restricted my lifting to no greater than 10 pounds until six weeks post surgery.

I hope I provided the requested information.
Posted 12/11/2006 12:55 PM (GMT 0)

Thank you all for you wonderful input.  Your support is overwhelming to me.

I read the Walsh book after diagnosis, but before deciding on treament.  Now I want to go back and re-read the open RRP stuff.

I never thought of starting Kegal exercises... this is a wonderful suggestion.

I am happy with my decision for an open RRP.  The Cleveland Clinic urology dept is ranked 2nd in the nation and they do hundreds of them a year. 

Posted 12/11/2006 1:07 PM (GMT 0)
Hey Researcher,
As youve probably notissed, it's different for every one who goes through it. I was almost your age, 50 when I had my R.P. and like others I was pretty sore and took pain meds which helped alot. My Dr. unlike a lot of others had me keep the Folly in for 3 1/2 weeks. When I had it taken out I was pretty much dry. I leaked a little when I sneesed or passed gass but that was about it. I practiced alot with starting and stoping the flow while peeing. I think that helped alot as did lots of Kegels before surgury. One thing that I haven't seen posted here is when I woke after surgury my testicles were huge and black & blue and my penis was almost pulled all the way into my body. I said to the Doc, What happened? I'm all potato's and no meat!!! He said don't wory, it's quite normal, and in time the lenght of your penis will come back. I'm happy to say he was right.
I didn't try to scare you as I don't know if it happens to everyone but I lived through it with little problems. So good luck my friend and keep us posted.
Pete
Posted 12/11/2006 1:49 PM (GMT 0)
Researcher..... Good luck. If I have any advice for you it is that you read the posts on this site more extensively than myself. Had I paid more attention I would have seen the posts on the Kegel exercise. Realy important to read the post entitled "Our Journey" by Bluebird.

Though I would never be so presumptuous to ever advocate one method of therapy over another, I will tell you that everything I've heard about the DaVinci Robotic procedure is that the margins are at least as good as the open procedure or darn close to it. With only 4.5 years of use with the robotic machines simply do not have the body of results which are very extensive with open surgery or radiological. The best advice is to rely on the reputation and skill of the surgeon. One thing I can definitely say is that if the surgeon you go to does only open procedures, that is what he will recommend as the best method. The very same can be said of doctors who do only one procedure. Keep in mind the old adage: "If the only tool you have is a hammer, everything looks like a nail."I happen to be one of those people who believes in this technology and if it floats my boat, I'm goin' with it. Plus, I've only read good things about the DaVinci on this site.

Though I have not done the Kegels I am in pretty good shape except for a being a few pounds overweight. I work out, play tennis 3-4 times per week, walk, bike, etc. To quote the groundskeeper from Caddyshack (played so brilliantly by Bill Murray), "So, I got that goin' for me."

Jay
Posted 12/11/2006 5:34 PM (GMT 0)

Thanks again for everyone's wonderful input. 

When I had my doc appointment to discuss treament options, I knew I wanted surgery, especially at my "young" age.  And I went in expecting to go the robotic laproscopic route.  However, after some discussion with the doc, I opted for the open RRP.  He did not try to push me into any one direction as the Cleveland Clinic does both open and robotic. 

As I have read here on this forum, the decsion is really a personal one.  There is no wrong or right choice, there is just my choice.  My biggest "concern" has been the 10 and 15 year (or more) recurrence rates.  At 51, that's really what all this boils down to in my mind since I have a lot of years left (or so I hope).  The long term recurrence data that I can find is minimal even for the open RRP.  So until my post surgery pathology report comes back, the doc won't discuss my long term prognosis, which I understand.  As Dr. Walsh says in his book, the 1st objectice of surgery is to cure the cancer.  Continence and potency are 2nd and 3rd concerns, although we guys (myself included) seem to fixate on these latter two concerns!

Can anyone provide the URL for the "Our Jouney" message.  I'd like to read it, but have not found it yet.

Posted 12/11/2006 5:52 PM (GMT 0)
hi Researcher,

I can ditto what others have said, and also to add that the worry and unknown was worse than the actual experience. Jeff never took a pain pill (because he didn't have any pain) and went back to work 12 days after surgery. I think that was a little too soon because he would come home pale and tired, but he insisted on going. he owns his own company so he felt driven. well, he is a very driven person anyway. everyone is different but I would think if you are in good shape, you'll be feeling good enough to go out and do things at least 2 weeks post surgery. the catheter was the most bothersome thing for Jeff. so do your Kegels and walk several miles a day. Bluebird's "Our Journey ~ Sharing is Caring" is on this first page. take care and remember...no question is a dumb one. kat
Posted 12/11/2006 9:26 PM (GMT 0)

Thanks M. Kat.  I read the "Our Jouney" message, thanks for pointing it out.  I was just talking to my wife this morning about what to wear home from the hospital and the message provided some insight.  It's like I thought... loose is better!

Cancer is not new to me as my wife is an ovarian cancer survivor (stage 1C).  She had her surgery/diagnosis exactly one year prior to my biopsy.  Her CA125 has been good (CA125 is kinda like PSA, only not as reliable) and a CT scan in October showed everything is all clear.  But we've decided not to do cancer next year for Christmas!  lol

Thanks again everyone for your support.

Posted 12/11/2006 9:57 PM (GMT 0)
Researcher87, Kegals ,walking,walking up stairs starting and stopping your pee. Ditto on all my friends here. I had open 2 months ago feel Great. I had a Rising 2 days after catherter was removed. Viagra and sex anytime. Sometimes I get a stiff one without it. 59 Years old. 6 gleason 2 out of 12 . The confidence in the surgeon is number 1! Shepla
Posted 12/12/2006 5:30 AM (GMT 0)

Same here...start the kegal's now along with walking.  The incision of the RRP was not that bad.  I did have a complication after surgery but just due to bad luck.  Went to my 1 month post cathater appointment today.  Dr. said I'm progressing in the bladder control about adverage.  I wish I would have been one of the quick leak stoppers.  But, it is getting better.  Dr. said just keep up with the exercises.

  While I had "the hang" I wore a light robe that the wife sewed up the middle when no one was here.  Other times wore sweats or shorts.  I only had the leg bag which made for frequent trips to empty it.  I would ask for both the large hang bag and the leg bag.

  Pain wise I'm not sure,  I had thrown my back out a few days prior to surgery.  So, having to spend so much time on my back made it hurt.  Maybe that is why I really don't remember the incision site being sore.  Did not notice being tired a great deal.  Strength never bothered me either.

  I had been on the 25mg Viagra / day plan.  Had only slight firming and leingthing.  The Dr. added the 100mg when ready for "action" to the plan today.

  Oh yeah...like the other post said.  The Boy's were swolen and purple after surgery.  But it does go away!!!

  I too went RRP because I was relaxed and confident with my Dr.  One reason is that he is about my age.  Kinda figured he could relate a little more about going through this at 43.

  Good Luck

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