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Medical Forum / Diseases and Disorders / Prostate Cancer / March 20076 Mths - Still Leaking
I'm closing in on 6 months since my prostatectomy and I still leak. Much of my leaking is due to stress like sneezing, coughing, bending over to tie my shoe and of course lifting objects. Is there still hope this will resolve by itself? Last visit to the urologist suggested that down the road I could have some surgery to relieve this from happening. I'm kind of down on more surgery if I can't help it. Second PSA post surgery was again, 0.01. If it wasn't for the leaking (and no erection yet), I feel like I never had surgery. Any suggestions, words of encouragement or advice? Thanks, Tony > I'm closing in on 6 months since my prostatectomy and I still > leak. Me, too, at 28 months, after my surgeon said he expected me to be dry within a few months. He keeps insisting I do my Kegels regularly, I keep forgetting. Maybe I'll try them for a few months some time if I can ever form the habit . . . I.P. Freely > > I'm closing in on 6 months since my prostatectomy and I still > > leak. [quoted text clipped - 3 lines] > forgetting. Maybe I'll try them for a few months some time if I can ever > form the habit . . . I would at least give the pelvic floor exercises a try although if you have not overcome incontinence after 12 - 18 months then its likely permanent. In that case there are still steps you can take, though they involve additional surgery, as discussed in the second link in that post. --- The Palpable Prostate http://palpable-prostate.blogspot.com Me too at 43 months. Most guys are pretty dry at 6 months but improvement can continue up to 18 months. I continued to improve slightly even after that but still use a couple of pads/day. "Stuff" happens to paraphrase a popular bumper sticker. Kegels should help with stress incontinence but my experience says they're not worth a damn. One side note, my biopsy said I had cancer in the apex of the prostate. I'm going to ask my surgeon when I see him in another couple of weeks if my biopsy may have influenced him to dig deeper in that area which is of course digging right into that last sphincter we need for continence. While I don't expect him to remember my case specifically, maybe he can comment generically on whether guys with apexical (did I just make up a word?) cancer can expect some leaking. Anyway, pads are a bit of a bother but not the end of the world and besides, you still have quite a bit of time for improvement. Dave Perry > I'm closing in on 6 months since my prostatectomy and I still > leak. Much of my leaking is due to stress like sneezing, coughing, [quoted text clipped - 14 lines] > Thanks, > Tony > Me too at 43 months. Most guys are pretty dry at 6 months but > improvement can continue up to 18 months. I continued to improve [quoted text clipped - 32 lines] > > Thanks, > > Tony Dave - Apical. -Gordy Thanks Gordy. I knew "apexical" wasn't correct but I couldn't think of what the correct word could be and I was too lazy to look it up. I'll be sure to use "apical" when I see my uro. Dave Perry On Feb 25, 5:07 pm, alv...@gmail.com wrote: > > Me too at 43 months. Most guys are pretty dry at 6 months but > > improvement can continue up to 18 months. I continued to improve [quoted text clipped - 27 lines] > > > Second PSA post surgery was again, 0.01. If it wasn't for the > > > leaking (and no erection yet), I feel like I never had surgery. > > > Any suggestions, words of encouragement or advice? > [quoted text clipped - 8 lines] > > - Show quoted text - > pads are a bit of a bother but not the end of the world I raid all the local Rite-Aids or Walgreens when they offer twofers on the only pad I consider of any use, the Serenity for Men. That way a very generous week's supply costs $2-$3. I.P. > I raid all the local Rite-Aids or Walgreens when they offer twofers on > the only pad I consider of any use, the Serenity for Men. That way a > very generous week's supply costs $2-$3. > > I.P. Thanks for the heads up so to speak. Many of my local suppliers including Rite-Aids and Walgreens don't often carry Serenity for Men and when I find them there's only one or two packages on the shelf and never on sale. My last two packages came from Amazon.com at roughly $5 less than the retail price around here, no way near two for one. Free shipping over $20 so that helps. I'll continue to search the shelves for sales. I still use Depends when "protection" isn't an issue (around the house) but they are an inferior product especially since they narrowed their absorbent area resulting in side leaks. Leaks are becoming a part of my life in other ways. I've been trying to track down a roof leak for the last two rainy seasons and now there's a leak at the lower corner of my sliding door the source of which is also eluding me. I've reduced both to a small trickle but more goop is on order. At least I know exactly where my urinary leak is coming from - I haven't tried the goop there yet. :) Dave Perry >> I raid all the local Rite-Aids or Walgreens when they offer twofers on >> the only pad I consider of any use, the Serenity for Men. That way a [quoted text clipped - 5 lines] > and when I find them there's only one or two packages on the shelf and > never on sale. Walgreens may have stopped carrying them. When the pads show up in Rite-Aid's nationwide Sunday ad (as they are nationwide this week), we ask one of the stores to order a case or two. I'm stocked up for several months now at $3.50 per pack of 20. Some Rite-Aids do not honor the corporate ads; those are listed on the nationwide flyers. When I encounter one of those Rite-Aids, I tell them I'm shopping at other Rite-Aids. I.P. It should be of some interest that Rite Aid is selling them, on-line, 2 for 1, and free shipping.  SignaturePSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05, 2/06, 6/06 PSA .07 .05 .06 .09 .08 .132 .145 Casodex added daily 07/06 PSA <0.04 Non Illegitimi Carborundum >>> I raid all the local Rite-Aids or Walgreens when they offer twofers on >>> the only pad I consider of any use, the Serenity for Men. That way a [quoted text clipped - 16 lines] > > I.P. > It should be of some interest that Rite Aid is selling them, on-line, 2 for > 1, and free shipping. Crap. I didn't realize their shipping was free. Could have saved us an hour of driving around. I.P. >> It should be of some interest that Rite Aid is selling them, on-line, 2 >> for 1, and free shipping. >> > Crap. I didn't realize their shipping was free. Could have saved us an > hour of driving around. Yeah, but what pretty scenery! SignaturePSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05, 2/06, 6/06 PSA .07 .05 .06 .09 .08 .132 .145 Casodex added daily 07/06 PSA <0.04, <0.05 Non Illegitimi Carborundum > "I.P. Freely"wrote. >>> It should be of some interest that Rite Aid is selling them, on-line, 2 [quoted text clipped - 4 lines] > > Yeah, but what pretty scenery! Back to bid'ness . . . I had no luck trying to order from them at their sale price. I was able to get some pads -- but not the 20-packs -- in my shopping basket, but it was at full price. I.P. >> "I.P. Freely"wrote. >>>> It should be of some interest that Rite Aid is selling them, on-line, 2 [quoted text clipped - 8 lines] > sale price. I was able to get some pads -- but not the 20-packs -- in my > shopping basket, but it was at full price. I guess the sale is over. My need for pads is much less than yours, so I only ordered two packs. SignaturePSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA <.1 <.1 <.1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05, 2/06, 6/06 PSA .07 .05 .06 .09 .08 .132 .145 Casodex added daily 07/06 PSA <0.04, <0.05 Non Illegitimi Carborundum >> I had no luck trying to order from them at their >> sale price. I was able to get some pads -- but not the 20-packs -- in my >> shopping basket, but it was at full price. > > I guess the sale is over. Nope; still on. Just can't put the 20-packs in the cart. I.P. > >> I had no luck trying to order from them at their >>> sale price. I was able to get some pads -- but not the 20-packs -- in my [quoted text clipped - 3 lines] > > Nope; still on. Just can't put the 20-packs in the cart. Then buy 10! And, later, buy 10 more. Or do your Kegels ;-) SignaturePSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA <.1 <.1 <.1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05, 2/06, 6/06 PSA .07 .05 .06 .09 .08 .132 .145 Casodex added daily 07/06 PSA <0.04, <0.05 Non Illegitimi Carborundum >>>> I had no luck trying to order from them at their >>>> sale price. I was able to get some pads -- but not the 20-packs -- in my [quoted text clipped - 3 lines] > > Then buy 10! And, later, buy 10 more. I'll try again. Serenity for Men come in two package sizes. One size has 48 pads per package (the 48-pack), the other size has 20 per package . . . the 20-pack. Only the 20-pack (a single bag of 20 pads) is on sale; the 48-pack (a single pack of 48 pads) is not on sale. But the only size package I can put into my shopping cart is the 48-pack. I can't put any quantity -- not one, 10, or 100 -- of 20-packs in the shopping cart. Other buyers here aren't making that distinction, thus are trying to buy the 48-packs, not realizing they are not on sale. I.P. I did not see the 2 for 1 rate on rite-aid.com (drugstore.com). 48 pads is $16.99 plus shipping. Amazon.com offers them for $13.42 with free shipping if you "subscribe," that is, agree to buy them on a periodic basis (once a month, once every two months, etc.). > It should be of some interest that Rite Aid is selling them, on-line, 2 > for 1, and free shipping. [quoted text clipped - 19 lines] >> >> I.P. It would appear they have a regional identification capability. See if you can get there by going here http://www.riteaid.com/stores/weekly_ad/detail_item.jsf?tnumber=T04515&circularI d=1191&page=4®ion=west SignaturePSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA <.1 <.1 <.1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05, 2/06, 6/06 PSA .07 .05 .06 .09 .08 .132 .145 Casodex added daily 07/06 PSA <0.04, <0.05 Non Illegitimi Carborundum >I did not see the 2 for 1 rate on rite-aid.com (drugstore.com). 48 pads is >$16.99 plus shipping. Amazon.com offers them for $13.42 with free shipping [quoted text clipped - 23 lines] >>> >>> I.P. I just bought two packs, 48 pads each, for $13.32 from Amazon and there was no mention of req > I did not see the 2 for 1 rate on rite-aid.com (drugstore.com). 48 pads is > $16.99 plus shipping. Amazon.com offers them for $13.42 with free shipping [quoted text clipped - 39 lines] > > - Show quoted text - > I just bought two packs, 48 pads each, for $13.32 from Amazon and > there was no mention of req I buy 48 pads for $8.36 at local Rite Aids. I.P. What do you guys wear BVD;s or boxer shorts with the pads when leaking? I was told to get some for after my husbands radiation seed implant on the 20th of March. He weighs over 200 lbs and wears boxer shorts. I was at CVS drugstore and looked for some pads, but came away confused with the sizes and how the pads will stay in or on . shirleyann Hello, Shirley Ann: I know how you feel. When my father-in-law took me home from the hospital after my catheter came out, we stopped at a Walgreen's to get some more pads, as the discharge nurse said I shoudl try something different than what I had on. So I stood there staring and mostly feeling like a fool for not knowing what did what. The pads (or guards) for men are designed to cup the man's testicles and penis. They're held in place by adhesive that attaches to the underwear. I do not know if one can wear pads with boxers; I've read it both ways on this newsgroup -- I've always worn briefs. The product package will say "for men" on it. Some of the men on this newsgroup have suggested that using women's sanitary products work well, also, and that they are cheaper than the guards. I suspect that their incontinence issues are pretty mild, but that might be an option if your husband's leakage is minor. The other products you see are the protective briefs. There are two styles: either a 'pull-up' that you wear like a brief, or one that has adhesive strips so that it tapes, like an infant's diaper. The advantage of the latter (I guess) is that there is less disrobing required to change them, but I never use them. I still leak a little too much to trust the pads for my entire work day (it's been not quite 4 months since my LRP). So, I wear a protective brief while at work, and change it around lunchtime if I've leaked a lot. Since I can lock the restroom I use, I can partially disrobe without problems. The pads are pretty much a 'one-size-fits'all' thing. But the briefs come in a couple of sizes and a few absorbency levels. The sizes correspond to your husband's waist, and the absorbency level would be determined by his leakage. So, when you see 'Depends Protective Underwear Extra Absorbency Small/Medium,' that's for someone with waist under 43 inches (?) and who is leaking enough so that the regular absorbency level is not enough. I hope it all goes well for your husband. How old a man is he? What were the numbers associated with his diagnosis? All the best, Charlie > What do you guys wear BVD;s or boxer shorts with the pads when leaking? > [quoted text clipped - 6 lines] > > shirleyann Briefs or boxer briefs are necessary to hold pads in place. I find boxer briefs much more comfortable than briefs anyway, because the former don't dig into the crease between leg and abdomen like briefs can. And as far as I'm concerned, only one brand of pads is of any use: Serenity for Men. Everything else is too narrow, allowing even the smallest of puppies to stick his head out the side windows and drool down the side of the car. I.P. > What do you guys wear BVD;s or boxer shorts with the pads when leaking? > > I was told to get some for after my husbands radiation seed implant on > the 20th of March. > He weighs over 200 lbs and wears boxer shorts. I wear briefs and I'm over 300 pounds. I can't imagine how they would work with boxers. I have boxers, but never tried them with pads. My Husband is 76 years old. He had no symptoms of running to the bathroom day and night like his friends did. His MD found a nodule on his prostate gland. That is how the tests all started. He had a biopsy, Lupron shot.This hormone shot was to shrink the gland as his was enlarged. He had a cat scan last week and it has shrunk, so the Oncologist is doing the radiation seed implant. His Urologist has prescribed antibiotics before the implant and 3 months after he will be on Flomax. shirleyann > My Husband is 76 years old. > He had no symptoms of running to the bathroom day and night like his > friends did. That just means that it's more likely that you caught his cancer in time. PCa often has no symptoms for awhile, and when they do show up, it's often too late for surgery or radiation. But it's frustrating nonetheless, isn't it? I had no symptoms before my surgery but I surely had side effects afterwards! --charlie I'm closing in on 6 months since my prostatectomy and I still leak. Much of my leaking is due to stress like sneezing, coughing, bending over to tie my shoe and of course lifting objects. Is there still hope this will resolve by itself? Any suggestions, words of encouragement or advice? ====> hi tony - at 6 months, i was still leaking. i just had my last surgery from complications from the scarring of the bladder neck. in fact, i slowly got a little drier as time went on. by 11 months, i was about 95% dry. at the 4 year coming up, i still leak off and on. yes, i leak when i tie my shoes and sometimes when i lift things. you will find out that you will adjust your lifestyle to help keep yourself dry. like if you are going to lay down to work on a car or lift something, you will go to the bathroom first to make sure you have an empty bladder. and i still have times, where i will start to leak out of the clear blue, it happened yesterday for example. just a few drops, and when i'm really tired, i'll leak. now, i can't speak for others. some say that they are dry from day one. and some are leaking so bad that they need a clamp or sling installed. so i guess the bottom line of all of this is simply the fact that we all stood at the gambling table of life and shook the dice and whatever you rolled is what you get. i want to wish you to have a dry pad soon. ~ curtis knowledge is power - growing old is mandatory - growing wise is optional "Many more men die with prostate cancer than of it. Growing old is invariably fatal. Prostate cancer is only sometimes so." http://community.webtv.net/PALMER_ENT/doc > you will adjust your lifestyle to help keep yourself dry. like if you > are going to lay down to work on a car or lift something, you will go to > the bathroom first to make sure you have an empty bladder. I have better luck with just the opposite: if I'm doing heavy work, I make sure I keep some urine in my bladder, enough to send a signal to my sphincter but not enough to stress it. (I stay dry when under stress with a full bladder, but it harms the bladder to remain full.) I.P. > I'm closing in on 6 months since my prostatectomy and I still > leak. Much of my leaking is due to stress like sneezing, coughing, [quoted text clipped - 11 lines] > > Any suggestions, words of encouragement or advice? Are you doing the pelvic floor exercises? There is a chart and discussion of progression of incontinence based on a study of 203 patients here: http://palpable-prostate.blogspot.com/2007/02/post-rp-urinary-incontinence.html At 30 weeks 85% of patients had minimal incontinence and at 54 weeks 91% so there there are still some progress to minimal incontinence in the second half year. In the next link is a discussion of urinary incontinence which discusses a different study and in that one after 18 months if one were still incontinence one could assume it was permanent: http://palpable-prostate.blogspot.com/2007/02/urinary-incontinence.html This last link also gives links to instructions on pelvic floor exercises and gives links to sources of treatment for otherwise permanent incontinence after RP. If you do wind up permanently incontinent you might follow up on those. --- The Palpable Prostate http://palpable-prostate.blogspot.com > I'm closing in on 6 months since my prostatectomy and I still > leak. Much of my leaking is due to stress like sneezing, coughing, > bending over to tie my shoe and of course lifting objects. > > Is there still hope this will resolve by itself? There is still hope. I'm not sure when my resolved itself. It was one of those things that after six or seven months, I just realized that my pads were always dry when I took them off. > Second PSA post surgery was again, 0.01. That's the most important thing > after six or seven months, I just realized that my pads > were always dry when I took them off. Sometimes mine are dry after a day, sometimes I'm glad I'm at home wearing sweats rather than out in public wearing khaki trousers . . . and I can't predict which days will be which. I.P. Hello, Tony: Congratulations on your second PSA test being so low. I'm still leaking 3.5 months out. From what I've read, it's normal. I do Kegels, but they don't really seem to improve things. --charlie RRP in August 2003. More or less totally incontinent of urine after the bladder neck resection. Had the AMS 800 artificial urinary sphincter implanted in September 2005. Did not work for me. Urethra too small for the device that clamps off the urine flow. Going in a week from today for a new sling procedure. Suggest you do some research on the options, e.g., sling, clamps, and so forth. Sounds to me like your case may be helped by the sling procedure. That is day surgery that will leave you with black and blue balls and a lot of soreness for a few days, but in the long run maybe dry pants! Check it out. From what I saw with my last Google search there are several new sling type procedures available. Good luck. And good luck on the erections. David S. > I'm closing in on 6 months since my prostatectomy and I still > leak. Much of my leaking is due to stress like sneezing, coughing, [quoted text clipped - 14 lines] > Thanks, > Tony Tony: < .1 is definitely the important issue. Kegels seem to help in the beginning. I could usually control leakage by explicitly squeezing when I was doing something thay was prone to leaking. If I didn't think about it, I would usually leak. I think that what happens is that the mind/body subconsciously learns to tighten up when you sneeze, laugh, bend over, etc. This happens over time. For me it took 2-3 months. YMMV. I would practise Kegels every now an then and let nature take its course. David Thanks to everyone that responded to my post. I guess time will tell and I'll still have hope. I ran into a friend of mine that is considerably older than me and he dried up about 8 months after surgery. I am VERY grateful for my PSA scoring of 0.01. With only 10% of my prostate involved with the cancer, I'm trusting (and praying) that it's gone forever. In the meantime, I'll deal with the pads and leaks and hope they stop soon enough. What's ironic is, prior to my surgery, my surgeon told me in the 10 yrs he's been performing the surgery, only 1 person has had major leakage problems and most clear up after 8 weeks out after surgery. Thanks all again for the help and advice. I'm sure there are tons of guys with success of clearing up and it would have been nice hearing from some of those guys. Take care all, Tony > From: "David&Joan" <djmarchand@cox.net> > Organization: Cox [quoted text clipped - 16 lines] > > David > What's ironic is, prior to my surgery, my surgeon told me in the > 10 yrs he's been performing the surgery, only 1 person has had > major leakage problems and most clear up after 8 weeks out > after surgery. My surgeon said that before and after my surgery; he seems genuinely amazed at my leaky outcome, keeps urging me to get serious about my Kegels. I.P. On 25 Feb 2007, you wrote in alt.support.cancer.prostate: > I'm closing in on 6 months since my prostatectomy and I still > leak. Much of my leaking is due to stress like sneezing, coughing, [quoted text clipped - 14 lines] > Thanks, > Tony Tony, I had the same problem for a number of months. My RP was in Dec 05 and I still leaked a bit, as you state, well into May. It progressively got better until I didn't need any pads at all. It takes time, different amounts of time for different men. Some uros consider the leaking like coughing, sneezing, etc as being still fully continent.Only happens occasionally. Congrats on the great numbers 0.01 is super! I wasn't so lucky. My first came back 0.87 and my second 5 weeks after that at 1.1 . Continued good luck with both the PSA and the continence!! Russ |
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