Doc Rok Update

Hello folks. I am scheduled for a surgery at Mayo clinic to remove my seminal vesicles (SV's) and about 18-20 lymph nodes. They will do an "open" surgical procedure where a vertical incision will be made in my belly from my navel to my pubic bone. I am wondering what the recovery is like from this operation. They must go through my skin, stretch the muscles, then incise the abdomen wall, and finally get to the SV's. All of U who have had an open radical prostatectomy or a similar operation to remove lymph nodes near the prostate gland, can U tell me what the recovery was like, how much physical pain U had to endure, the time line to healing up, what was helpful to have around (I have heard a recliner is a necessity), the pain meds U used if any, how soon U could walk around, go up and down stairs, return to your full lire. Mayo will not give me any names of men who have been through this procedure to get info. Please write doc rok with any information that U men may have to share with me as I go through this procedure. It is planned for 11/17/16. Tx all. Doc Rok

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  • It hurt like hell the second day then started improving. I was on hydrocodone. I was back to work full time in six weeks. Don't rush it though. Walking will be your friend. Good luck!

  • I had my pelvic lymph nodes removed at the Mayo Clinic in 2012. The surgeon was Dr. Kearnes (not sure I spelled his name correctly). I am sorry to say that I had a horrible recovery. I had a serious case of ascites, lymph node fluid filling my belly, that required that I have a drain installed for almost 2 months. I was in the hospital for two weeks after my surgery and was put on TPN. I couldn't eat any food for almost two months. It was miserable and I lost 30lbs. The doctor told me it was a rare side effect of the surgery. The unfortunate part of my ordeal is that my cancer still spread and I am currently on chemo with several bone mets. For me the surgery did nothing to stop my cancer and resulted in the worst possible side effect. I live in Dallas and stopped going to the Mayo Clinic after my experience. I currently get treated at the NIH Cancer Center and am on a chemo clinical trial.

  • Yikes sfboy58. I am so saddened and frightened as I read your post. Such nasty ramifications with your situation. Yes, Carnes is the guy who will do the surgery for me. TPN stand for what again, sorry to be such a nincompoop! And your cancer spread after the surgery, do they try to compensate for that in the surgery, in that they are careful to keep the tissues free from the cancer that exists in my seminals? My hope is that your hassles are a rare side effect of the surgery. But who the hell knows? So much risk here with this surgery. Sometimes I wonder if it is worth the risks? And now on chemo buddy. I am so impressed with your courage, endurance and efforts. TX so much for telling me of your experience at Mayo. doc rok

  • I just saw your reply. TPN is basically fluids that are given to you when you are not allowed to eat food. They installed a port in my arm and I had a backpack which had a big bag of the fluid. I was hooked up to the fluids for 24 hour every day for over one month. The drain in my belly was there for almost two months. Miserable! Hope you don't get this side effect. The good news is that it is nit common. When they did the surgery they took out more lymph nodes then planned and more had cancer than appeared on the C11 scan. That is probably why it had already spread beyond those lymph nodes. Good luck on your surgery. Wish you the best.

  • Hello again sfboy58. TX so much for your clarification. I have a curious twist of fate with my upcoming surgery. After my consultation with the Mayo boys, I went to another Urologist here in the Twin Cities for an outside, and independent opinion from him on the proposed course of action ordained by Mayo. To my utter shock and surprise, Dr. Chris Weight, U. of Minnesota Urologist, said he could do the same procedure (SV's removed and lymph nodes removed) robotically. Really I said. Yes. Why did not Karnes and Kwon tell me that too? Weight trained at Mayo, curious fact, after his residency at Cleveland Clinic. Two year fellowship at Mayo following C. Clinic. So he knows the players at Mayo. After my consultation with Weight, I asked him to call Karnes and discuss this robotic option. He called Karnes and Karnes said that he thought that the robotic procedure was "reasonable". Why did not he tell me that? Karnes does only the open style of surgery and is not a robotic guy. Weight is! (robotically competent). There is a robotic doc named Gettman at Mayo who is touted by Weight as very adept and competent. Did I get caught up in the politics of Mayo and some in house Urology power struggles boy 58? U tell me. Anyway, I am so relieved in hearing this other option. Long story shorter, I am changing my surgery from Mayo to the U. of Mn. and am scheduled 11/15/16 for the procedure. I am glad that I followed my instincts and got another opinion outside of Mayo. Even more ironic that Weight trained at Mayo and is quite familiar with them. Post surgery I will post again and let the guys know what happened and where I stand then. Tx so much for your support my man. Doc

  • I went to a oncologist and urologist and considered having the surgery in my hometown. But the surgeon, who knew Dr Karnes, did not have as much experience. So I elected to do my surgery at Mayo. I was not given a robotic option from my hometown surgeon. I would definitely go with the robotic option if I had.

  • Hi sfboy58. I know what U mean. I also was not given the robotic option from Mayo. Why? not sure but my robotic man in the Twin Cities, who did a post doc at Mayo of two years, said that Karnes does not do the robotic. Another Urologist at Mayo does the robotic, named Gettman. Is it politics, egos, collusion ( docs in cahoots with each other), I do not know? Very disturbing though! My doc here has only done up to 30 of these operations on a radiated bed, like I have. He says he can handle the scar tissue and is hopeful because I am only doing surgery on my SV's and lymph nodes, not the prostate itself. I still have my prostate gland due to the fact that I have been radiated 2x. On my biopsy at Mayo, no cancer was found in it, so it is being left in me. My doc here said that if they were trying to remove the prostate gland too, that he is not to sure he would recommend the robotic due to the complexity of the operation. I am taking a big risk with the robotic, do not want the open at Mayo, and there are no guarantees boy 58. I am hopeful my man here can do the procedure with no permanent damage to my ureter nor rectum. He says only 1-2% chance of that occurring. Here I, we, go again sfboy, "rolling the dice" once more. I sure hope for a positive outcome. Also I consulted with another Urologist yesterday, and he said he would not do surgery, and instead put me on hormones. I know that! Others have said the same thing. So much variation in recommendations from these docs. Mayo said do the surgery because positive chance we can get the cancer and at least get another 3-5 years of quality of life out of it. Tx for everything U write and send me positive vibes. Were U happy with the election results, since Tenn. is a red state I believe? Doc

  • I actually live in Dallas, TX. Even though I live in a red state, the election was a disappointment to me since my candidate lost. Better luck next time!

  • My main candidate lost too. And U live in a red state. Good 4 U 58. doc

  • From 'alt.support.cancer.prostate' group. Not everything on the list is necessary. groups.google.com/forum/#!s...

    <begin quote>

    Post-Prostatectomy Shopping List

    I compiled this shopping list of paraphernalia that it would be good to have

    on hand when you get back from surgery starting in September 2001 before my

    own operation based on responses I got to a request here for suggestions.

    Thanks to all those who helped put this list together. Since then I have

    re-posted periodically it to make it available to the newly diagnosed.

    Occasionally,additional items are suggested and I try to remember to add

    them next time I post this message.

    One thing I would like to make clear up front - the list is exhaustive

    because I have included almost everything everyone has ever suggested. This

    does NOT mean you should run out and buy everything on this list. Some of

    these items are in the "luxury - nice to have" category and others are

    specific remedies some individuals found they needed for complaints that may

    have been specific to them.

    Read through the list and at least think about what is here and what its

    purpose is. Get creative in thinking how you might adapt something you

    already have around the house to function in the place of some of these

    items.

    I've taken the liberty of broadly ranking the suggestions with what in my

    opinion are the more important items first.

    Certain activities, not strictly hardware items, were recommended

    frequently. I've included those activities as well.

    Hardware:

    . A pair of oversized basketball type warm-up pants with snaps or zipper up

    the leg (to allow discreet access to the catheter and bag). Get a pair that

    is large enough to accommodate the large (night) bags and smaller (walking)

    bags - that will be provided by the hospital. A dark colour will be less

    likely to show wetness from any accidental leakage compared with a light

    colour. Fast drying material ("parachute material") is recommended if

    possible. This is not essential.

    .A recent suggestion:

    "I have found convertible hiking pants (pants whose lower leg can be

    zippered off to create a pair of shorts) to work wonderfully well while

    wearing a catheter. This type of pant also has a side zipper on the lower

    leg, which makes leg bag access a breeze. You can open the upper zipper (the

    one that runs around the leg) part-way to switch bags and let out the hose

    to the large drain bag."

    . A five-gallon plastic bucket is very useful at night as a receptacle for

    the large night bag. The bucket may become your constant companion around

    the house. Get a square one if you don't already have something else.

    . "Invalid" cushion (looks like an inner tube)

    . Antibiotic ointment/lubricant (Polysporin, for example) for where catheter

    exits (some had this supplied by their hospital). Some recommend a

    water-based lubricant such as KY Jelly but that tends to dry out quickly.

    There has been some debate about the best fluid to use. You want something

    slick, long lasting and certain not to damage the tube. It would be nice if

    it were also antibacterial. I used Polysporin and Erythromycin with no

    problem.

    . Alcohol swabs to clean the catheter at the tip of the penis (single use

    wipes designed for cleaning the skin before an injection).

    . A pair of slippers or sandals or loafers.

    . Over-the-counter stool softener

    . Get a haircut and trim your toenails before surgery

    . Several people recommended buying, borrowing or otherwise acquiring the

    use of a reclining chair.

    . Place a chair by the bed with the back facing the bed. Use the chair as a

    bedrail to help you get up. Use the seat as a bedside table to hold some of

    the things you want to keep handy. I would STRONGLY suggest you test this

    out BEFORE you go to hospital to be certain it can take your weight as a

    handrail before you rely on it post-surgery!

    . A pillow to hug early on to ease pain in laughing etc.

    . A pillow to put between your knees while sleeping on your side.

    . Grab bars in the area of the commode (don't use towel racks for grab

    bars!)

    . Use a plastic coat hanger stuck between the mattress and box spring to

    hang the bag from or just place it in the bucket on the floor.

    . Nice baggy, soft sweat pants or warm-ups - oversize with drawstring if the

    weather is warm inside the house or out of doors

    . A soft bathrobe belt to make a shoulder strap to suspended the big bag if

    you prefer it to the "walking" bag.

    . Silk/nylon/rayon boxer shorts for the period you have the catheter

    . Several people recommended buying, borrowing or otherwise acquiring the

    use of a reclining chair.

    . A plastic sheet to go under the bed sheets and protect the mattress once

    the catheter comes out. A large plastic garbage bag might work in a pinch.

    . Have enough easy to prepare food on hand for 2-3 weeks

    . Book(s) you've been intending to read

    . Fresh batteries for your TV remote

    . A cordless phone and up-to-date phone list

    . Some big baggy mesh shorts (in summer)

    . Suspenders may be helpful, in place of a belt

    . Two dozen inexpensive white washcloths (in a big bundle)

    . Some of the little plastic, stick-on hooks to put in the shower etc., for

    a place to hang the bag or simply the pail, placed outside the tub.

    . To help stave off possible urinary tract infection, either Ural (seems to

    be an Australia/New Zealand over-the-counter drug) or a supply of cranberry

    juice. They work in different ways to achieve the same thing.

    . A watch or interval timer to remind you not to stay sitting too long

    . A walking stick may prove to be helpful.

    . A safety bench (maybe a plastic lawn chair?) for the shower (sometimes

    you're a little light-headed when you first come home and it's nice to have

    something to sit on)

    . A raised seat to put over the toilet (as an alternative, or in addition

    to, grab bars)

    . A grabber for picking things up if you drop them so you wouldn't have to

    bend down.

    .If you have the hardware, fill up a MP3 player with your favourite tunes &

    use headphones to help "drown-out" the hospital noise.

    . A "toilet seat lifter". I would be inclined to bend a coat hanger into a

    hook that I could work under the lip and lift,

    but there are probably commercial step-on type mechanical devices akin to

    garbage can lid lifters out there. Just use a stick or bend at the knees,

    keeping the back straight. Heck, just leave the lid up for a few days.

    . One person indicated his hospital made him wear a pair of anti-embolism

    stockings the whole time he was there. He bought another pair when he went

    home and suggests considering doing the same.

    Repeated Advice:

    . Learn to roll sideways out of bed (rather than sit on the edge trying to

    stand upright). Practice before going to the hospital.

    . Walking is the best way to get your body ready and to recover.

    . Wait to see how bad your incontinence is BEFORE purchasing a lot of pads

    etc. but do buy a package of men's guards to bring to the appointment when

    the catheter is removed

    . Kegel, pre-operation and post-catheter removal (not with catheter in)

    . Drinking straws - you will want some for the first week.

    . Plastic cups - they're lighter than glass

    . Extra pillows - for sitting up in bed and as arm rests at night and for

    the couch.

    . Velcro Foley straps - the walking bag can slip down your leg and pull on

    the tube.

    . A current phone list - one of contact people who must know, one of friends

    to come visit you, walk, and meals, shop for you. Spread the burden.

    . A few woman's menstrual pads - don't be shy, the big ones, they're

    smaller, cheaper than incontinence pads and can be added to the diaper and

    changed more often.

    .Travel bag - like a baby changing bag for when you go out or the keep

    women's pads in your pocket.

    . Viva paper towels - to help when wet. they're soft.

    . Toilet wipes - the first few times they're nice, along with baby wipes for

    everything.

    . Diet plan - coffee is bad for bladder, eat more fruit, less meat, no

    cheese & bananas while on stool softeners. Diet and supplements are part of

    permanent recovery plan.

    . Look into a cancer society group such as "Man to Man" that meets monthly

    and go to a meeting before surgery.

    - Remember, what you are going through is TEMPORARY, in a few weeks you

    won't even remember the discomfort of some of this stuff!

    JP <end quote>

  • Hi, would a hot water bottle or heated pad be useful for the pain? Or may be an ice pack?

  • Excellent and helpful post. Golden helpful hints

  • Hi Dan R3254. Hey buddy, great list of materials to have around. I expect to have the catheter out after one night in the Hospital. So I hope no catheter issues in my surgery. I hope so! Pain control, moving around the house, walking as much as possible, no drainage problems, stool looseners, practicing rolling out of bed, keeping the pressure off of the incision area, extra pillows, I am renting a recliner for the ordeal since I do not have one, and on and on Dan, I hope to integrate as many of your suggestions as I can to minimize my recovery. So much depends upon the results of my incisions and removals. tx much. steve

  • Very nice post. I am dealing with a supra-pubic catheter that will thankfully come out in a week. Suspenders were a big help; I wish I had thought of that earlier. I find prune juice, stool softener pills to be a help in regularity even before my surgery. I keep a fleet enema-in-a-bottle handy when the other remedies aren't working. I'll need a good chiropractor down the road when I am healed up.

  • Hey WSOP tx much for your reply. I will keep your advice in mind as I try to minimize the constipation stuff with prune juice, stool softeners, and other stuff to try and remain loose and not constipated. Doc

  • My experience at Mayo with Dr. Karnes was similar to sfboy58. I had the bi-lateral pelvic lymph node dissection in 2013 (post RRP, post RT) and I also had the fluid build up post surgery. I had to use vacuum therapy for six weeks to close the incision and drain the fluid. The incision was re-opened two or three weeks after surgery due to the "leaking". My local wound care doctor said because the surgery took over six hours, the layer of fat under the skin liquified post surgery (not lymph node fluid as mentioned by sfboy58). The surgery took longer than expected because I had prior prostate bed radiation. I now have a very unsightly scar. Otherwise, post surgery recovery was similar to the open prostatectomy, with one major difference - the catheter was only in for about 24 hours, not a week. Scrotum had severe swelling and was very painful for about a week. I didn't use any prescription pain medications. Discharged from hospital in less than 48 hours

  • Tx much for your response Notsdr. I am glad U got through the situation altho it sounds harrowing too. They told me to expect a 2-3 hour surgery. Hmmm! What is vacuum therapy, BTW? I did not know about scrotum swelling, that is a new angle now. I agree that the catheter for only 24 hours is good news. I too have had external beam radiation and a brachytherapy prior. Carnes says he can handle the job. How about fluid buildup with the lymph nodes extraction? So much can go wrong, what goes right, is your PSA under control with no increase sine 2013? I appreciate your response again buddy. Docrok

  • Vacuum therapy is the use of a vacuum device by a wound care doctor to drain fluid and close the wound. A catheter like tube extends from the re-chargable battery operated mini-vacuum to the open wound. The other end is sealed to the body by tape, with the tube on top of the open wound, to create the vacuum. I have photos of the device and what the incision looked like post surgery and after the incision had to be reopened if you would like to see them - off line. As for my PSA, it was about 17.5 the day of surgery, and 2.3 two weeks thereafter (no bicalutamide was used, contrary to Dr. Karne's recommendation). The C-11 showed activity in 5 nodes, 12 were removed, and 3 had PCa (GS 4 + 4). Query - did the surgery miss two or did the scan show false positives? My guess is the former. PSA began to rise within a few weeks after surgery, and rose to 49 within a year and a half, at which point I started and continue to use intermittent 50 mg bicalutamide therapy. Brief history - DX age 52 09/08, PSA 136. RRP 12/08. pT3bNOMX, GS 4 +3 with tertiary grade 5. IGRT 09/09. There are published online results for Dr. Karne's pelvic lymph node surgeries based on the C-11 scan. See:

    urotoday.com/index.php?opti...

  • Hello Notsdr; Tx again for your reply my man. Vacuum therapy I guess is a possibility. I just must see how I come out of all this. How difficult will it be for the seminals to be removed, and then the LNodes. I am not even sure what to hope for? Guaranteed swelling, incision not healing, what the hell is going to happen. So many unknowns. Hey tx for the forward on Carne's URO today article. Very interesting. I hope post surgery that my PSA comes way down and stays that way. Mine is at 11 right now and quickly rising. I saw the PSA going more rapidly late last year. So I went to my local Urologist and he referred me to Mayo, the c 11 and the rest is history to right now. My surgery is planned for 11/17/16. Just two weeks away from D-Day. I really appreciate your feed back Notsdr. Doc

  • Best of luck with the surgery! Looks like you have done your homework and know the potential risks and rewards. I hope you have the best possible result.

  • Tx for your support my man. Two weeks from today I will be undergoing the surgery. Yikes! Keep me in your thoughts Notsdr, and send your positive vibes my way. doc

  • Good luck Doc and a fast recovery. The things we have to deal with.

  • I concur with you. The crap that goes along with this Journey are difficult and cumbersome. Trying to keep up the energy to fight back. It gets tiresome, discouraging, frustrating and is fraught with hassles. Doc

  • Hi

    I had salvage extended lymph node dissection and right retroperitoneal lymph node dissection performed by Dr Karnes at Mayo in January 2013. I had open RP 12/2005 and salvage RT 5/2006 at MSKCC in NY

    The surgery at Mayo was long (about 6 hours) but uneventful. Unfortunately of the 25 nodes the removed 15 were cancerous widely distributed in the lymphatic chain. The C-11 Choline scan only picked up a few in one area. Those are the chances one takes in this type of surgery. I found Dr. Karnes to be a very competent surgeon and my patient experience at Mayo was good.

    Recovery was typical for major abdominal surgery. I was up and walking the next day and left the hospital the following day. I stayed another night at the hotel in Rochester MN and my wife and I drove to Minneapolis the following day and flew back to NY. The trip home was not fun but... We flew home first class and this was very helpful. I worked from home for a couple of weeks and then back to normal activities. If you have not had major abdominal surgery beware it hurts no if and or buts so you need to prepare yourself for the ordeal.

    Yours sounds like a different procedure than mine. Good luck.

    Bill Manning

  • Tx so much Bill for your reply. Yes mine is the removal of the seminals along with lymph node removal. C 11 shows no lymph node contamination, but who knows what they will find. I always feel like I am "rolling the dice" each time I have taken a shot at the PC. Can U advise me on specific things I can do to "prepare myself for the ordeal?" Much appreciated Bill.

  • Well sure I will try. I think it kind of depends on the individual.

    I tend to try to ignore the pain and push to get the healing underway. In both my RP at MSKCC and lymph node surgery at Mayo I was up an walking even before the staff tried to get me up. I walked the halls endless. The big reason is to get your bowels moving. It is painful but necessary to move as much as possible. You will likely have bloating and gas pains but keep moving as much as possible. I also wanted out of the hospital ASAP. In both cases I was offered to stay another day or leave, I also chose to leave in both cases. They will not discharge you until your bowels are working. Same routine at home walking as much as possible. In both cases I also had pressing business obligations and was on the phone and email from my hospital bed and all during my recovery (I am not sure this helped my recovery but it kept me distracted). I think the second time was a bit worse since I knew what was involved. It is no fun but it is very doable. I recovered well from both surgeries so I had no real complications.

    One caveat that prior to my first surgery in 2005 I was in exceptionally good shape and was a competitive age group triathlete and even in 2013 I was still in good physical condition despite years of treatment. Here is a link to my website sites.google.com/site/dolla...

    Try not to get too freaked out about the swelling in your groin area. It looks bad but it should be fine. If you go home with a catheter that part really is not fun make sure you keep the area clean and well cared for, I did use some anesthetic lubricating gel around the tip and the catheter. Luckily my lymph node surgery did not require me to have a catheter at discharge.

    If you are traveling a distance home from Mayo after the surgery be advised this may not be fun so take your time and try to be as comfortable as possible. As I mentioned we flew home the day after being discharged and flying first class was a significant benefit with easier boarding and de-planing as well more seat and leg room. The whole trip home was really difficult. I originally thought I could do it alone but I definitely needed help. In retrospect I should have stayed in the hotel for a few more days.

    As far as Mayo we stayed at the Marriott Residence which was helpful to have the extra room and the kitchen.

    My surgery was at St. Mary's Hospital and I imagine yours will be as well. The check-in procedure is amazing but can be a bit overwhelming. I was amazed at how many people were being admitted and we were assigned a check in time and there were long lines but they moved quickly and it was well organized. There is a waiting area for family members with a board constantly updating the patient status. I think I was in surgery for about 6 hours. They would test each node for cancer in the OR. It also took a bit of searching around to find the lymph nodes. I had 13 nodes removed in my original RP and then another 25 in this surgery.

    Dr. Karnes came to my room after surgery and updated me on what happened (even though the news was not great or what we had hoped for it was good to hear the results quickly).

    This was my approach and it may not be for you. This is only my experience and my approach considering my personal situation. I hope this is helpful.

    Bill

  • Hey Bill that was a lot of info. and much appreciated. I too hope to be out of the Hospital the next day. No catheter planned but I will have one initially after the surgery. I did not know about the bowel movement prior to discharge. I thought only walking some and urinary competence one needed to demonstrate. I have to check that out. When does one eat to get any food into the system? I think I have to check in at St. Mary's at 5:30 am. Sounds like a zoo from what U say. Lots of folks getting ready for whatever. Yikes! I too would like to be distracted from the pain. At home I hope I can walk around a lot, sitting and lying down could be difficult for the pain. I have rented a recliner for two months that many have recommended to get comfortable with the pain. Did U use one too? Swelling in the groin great. No one has forewarned me yet about what exactly the recovery will be like. How about any swelling in your legs, they told me is possible, since they are removing some lymph nodes? Did U have any swelling from the loss of LNodes? I am "fit" in terms of my physical being. I exercise regularly, am thin, and feel my tummy muscles are in shape. I will go in strong, and I hope I come out strong too. Of course I hope for a successful surgery. Hearing that Carnes comes in to tell you is an anxious moment for me as I learn what happened in surgery. 6 hours sounds like a long time. I was told the operation was 2-3 hours long. How come yours took so long> Running the LNodes to pathology and back? I do not think I will be as busy as U were when U were taking phone calls about work, etc. I am retired and have cancelled several groups and other responsibities into the first of the year to see how the recovery is going. I will be 6 weeks out Jan. 1, 2017. I live in Minneapolis, so am 2 hours from home. I have heard the ride home can be painful. The seat in the car giving me a ride back to my domicile, has a reclining seat. Hope it helps. I think I have hit most of the topics U mentioned. Tx for taking time to talk to me Bill. Very kind of you my man.

  • Hello Doc Roc, we are all different. My experience is that I had a RPD and double hernia repairs at the same time. I went in the hospital on a Friday morning and out on a Monday morning. Except for the wearing of a Foley bag I didn't have a bad time of it. Climbing stairs was not a problem. However I do have a scar which prevents me from wearing my bikini bathing suit (lol).

    Good luck and good health to you.

    j-o-h-n Saturday, 10/29/2016 @6:14 PM EDT

  • Hi j-o-h-n: What is a Foley bag my man? No mention of that prior to my surgery? Yes I live on second floor of my duplex, so stairs are an issue for me. I do not plan to leave my home for at least 10 days and I hope that some progress will have occurred by then so that I can feel hopeful. Any specific advice on what I can do to help myself with recovery. Some have mentioned a recliner, which I do not have, for trying to find a comfortable position to sit and lie down in. Did U go to physical therapy for any assistance in recovery? How long before U felt back in the game again? Questions, fears, hopes my man. Docrok

  • FYI

    A Foley catheter (named for its designer, Frederic Foley) is a flexible tube passed through the urethra and into the bladder to drain urine. It is the most common type of indwelling urinary catheter. The tube of a Foley catheter has two separated channels, or lumens, running down its length.

    j-o-h-n Tuesday, 11/01/2016 6:53 PM EDT

  • Ok Foley bag is another name for the catheter. They tell me that I must have it for one day post surgery. If I am discharged the next day from St. Mary's, catheter comes out. Fine with me. Lots of questions about losing the seminals and what impact that has on my overall healing and body? Plus lymph nodes being removed. Unsure what lies ahead exactly. Some adventure! Best regards j-o-h-n

  • Hey DocRock,

    I had an open RP last December. I spent the night of the surgery (Friday) in the hospital but was discharged the next afternoon. I was off of the oxycodone by Sunday night, so the pain wasn't that bad, assuming you take it easy. I just took extra strength Tylenol for a few weeks. I wanted off of the oxy as fast as possible because of the constipation it could cause. That first fart was a huge relief. :)

    I found the catheter to be the most annoying part of the whole experience. I used the big bag for the most part and kept it hanging on the side of a five gallon pail for 90% of the time. I didn't really like the leg bag version, but that did allow me to get out of the house and go to Target. That first outing felt awesome. Changing the catheter bag was a pain in the ass, and maybe I was over cautious, but followed the instructions to the "T", with the alcohol wipes and vinegar rinses etc. By the end of my 10 days, i was experiencing some leakage, and the small bag didn't drain me as well as the big bag. I was just happy to get rid of that thing.

    I also had suction tube through my stomach for about 2 weeks after surgery, I ended up removing that myself, a little pre-Christmas present for me. I was back to work 3 weeks after surgery. That also leaked and kind of left me always soggy. But I understood the importance of getting rid of that extra fluid so kept with it.

    I found the recliner to be a good place to sleep my first few nights. You can't really move around in a recliner, which is good. I was happy to move to my bed where I could stretch out though. I was in the shower by Monday, which also helped a lot with attitude and just feeling back to normal a bit. While it's good to "take it easy", it's also good to stretch yourself a little bit to try to get back to some semblance of normal.

    I also bought a few pair of basketball warm up pants, with snaps down the side. Those were helpful with the catheter tubing. I didn't do too much for those first three weeks, except measuring the amount of bodily fluid I was removing each day. I was very prepared before my surgery, and purchased a lot of the things on the list above so I had everything I needed before I went it. The internet is great for buying stuff that might be a little embarrassing. I bought a lot of depends pads and stuff that i ended up not needing. If you need some, let me know.

    As we always say on this board, every person's experience is unique, but I'll go on record as saying that it wasn't as bad and I expected it to be and would definitely do it all over again knowing what i know.

    Chuck

  • Hi Chuck:

    Tx for taking time to reply Chuck and to attend our last meeting. First pain pill cessation, I agree I wan to get off of the Oxy ASAP. How high a dosage of high does Tylenol did U have to take to survive w/o much pain? Yes, I have rented a recliner for the first 8 weeks in hoping I can find some comfort at first. Initially, was sitting in a chair, and sleeping prostrate on a bed tolerable? Sounds like the first several days it was not. U were back to work after three weeks, wow dude, that is encouraging. They are not anticipating a catheter once I leave the hospital, so I hope to avoid that hassle. My prostate gland is still in me and there are no plans to remove it. Just cut the seminals out and two loops of lymph nodes, 18-20 in I hear. So much uncertainty here Chuck. By stretching do U mean to do some exercises to assist one, or just that do things that I need to do like cook, clean, move about the house, up and down stairs to do laundry, etc.? I am glad to hear U endured the ordeal, and have moved on. I hope your PSA is now not rising and staying stable. Hope to see you on the 10th at Hope Lodge for our next meeting Chuck. Best regards: Doc

  • For Tylenol, I was doing about 1000mg at first. and then slowly lowering that. There really wasn't that much pain if i didn't move around alot. But then, it took awhile for the pain blockers to leave my body too. I must have been on a pretty heavy dose as the incision site was pretty numb for a few weeks.

    I didn't actually try to sleep in my bed the first few nights, it was just easiest to stay in one place. Plus, the tougher part for me was sitting up from a lying position without help, given where the incision was. So it was just easier.

    By stretching I was talking more figuratively, but there is value in the physical stretching too. There are some scar stretches that you can find on YouTube and I learned about from my physical therapist. Also, walking around helps the bowel activity etc. so I encourage both as you are able.

    It's a journey, but not a totally intolerable one. Take your time, but expect that you'll be back to nearly normal in 4 - 6 weeks. At least that was true for me, and it sounds like your surgery will be about like mine, or a bit less involved if anything.

  • Hi Chuck: Helpful advice my man. Yes I plan to move around, walking, as much as possible. I have rented a recliner presuming sitting upright and lying down could be cumbersome and painful. 1000mg is the dosage U mentioned. Tx I will be asking for an authorization for PT from my surgeon. 4-6 weeks sounds good to me. I hope I can rebound in that time. I would like to be leading our support group in January Chuck. Doc rok

  • I'm confident you will be good as new (well, almost).

  • Yes Chuck, my confidence is shaky right now with all of the feedback I have gotten. I want to be optimistic and realistic at the same time. I vacillate between fear and hope, back and forth. I am adopting your attitude of success with some limits. I already suffer from ED and some stress and other incontinence. No more nasty side effects, etc., is hoped for. Keep in touch my man. Contact me from the info. on the program description for our group anytime to check in and send me your positive vibes. doc

  • By the way, are any of the other posters on this site also members of our group? It was funny to hear guys speak last month mirroring comments on this board. The guy who "knows his body so well that he would detect any change" was one, also the guy who is all about supplements, vegan diet etc. Do you know?

  • I am not sure about other members on this Malecare site. There are other sites that some go to. If U come to the next meeting, and I do, remind me to ask others for their favorite blogs places. I know one man who comes has one such place he likes to go. Let us get a list going of choices in this realm. Hope to see U on the 10th, one week b-4 my planned rendezvous with the Mayo bunch. Yikes Doc

  • Good luck with your surgery! Now that you have the robotic option, I'm confident you will bounce back quickly. Stay positive!

  • Hey Chuck; Good to see U last night. U R becoming one or the more active in the group with your interactions. I like that. Yes surgery, I am relieved that I have another options besides the open, for the SV's. Tx for the encouraging words. Doc

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