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Medical Forum / Diseases and Disorders / Prostate Cancer / January 2007questionable incontinence treatments
Now about seven weeks post-RRP (11/17/2006), my local urologist recommended a collogen injection to the neck of my bladder via cystoscopy, scheduled next month, to help dry me out. He also prescribed 15 mg. of Enablex. He gave me an injection in my arm to test for allergic reaction to collagen. Today, however, I went to Memorial Sloan-Kettering for a two-month follow-up with my surgeon, Dr. James Eastham. I also met with sexual medicine program director, Brian Mulhall. Whilte the focus of the exam with Dr. Mulhall was not incontinence, the subject came up. Both doctors, independent of each other, told me the proposed collagen injection was "extremely unusual" and "not indicated" and virtually guaranteed me that it would not work. Dr. Eastham also told me that Enablex is not useful for post-RRP incontinence. An associate (fellow) of Dr. Eastham who examined me before Dr. Eastham came into the room told me the same thing about the collagen - basically, to forget about it and put my faith in the passage of time. It sounded as though none of the three of them ever heard of collagen injections for male post-RRP incontinence -- though I do see a few relevant hits in Google (none of which look too promising). All of this left my confidence in my local urologist somewhat shaken. Are his treatment recommendations totally off the wall, or has anyone here had or heard of successful treatment using collagen and/or Enablex?? My question is not so much whether to follow the local guy's advice (I'll take the advice of three experts from MSKCC over his, without hesitation, and plan on cancelling the cystoscopy, as they also recommended). What I'm wondering is if I ought to start looking for another uro... or if I even need a urologist. Maybe I should just continue kegeling, etc. and wait for myself to heal. I'll see doctors Eastham and Mulhall again in four months. Dr. Mulhall, btw, was very personable and clearly is a doctor I can trust. He prescribed Caverject 2x per week, and 25 mg. of Viagra the other 5 days and told me to stay in regular touch with a nurse practitioner in his office regarding response to these meds. So why do I need a local urologist?? (snip review of recommendations of uro & others) > So why do I need a local urologist?? Excellent question. Re: Enablex, see: http://www.rxlist.com/cgi/generic3/enablex_ids.htm Regards, Steve J Steve or anyone, I don't see anything there suggesting that it's inappropriate for me, although it makes no specific mention of use after a radical prostatectomy. I got the clear impression from Dr. Eastham, though, that he wasn't recommending Enablex for someone like me. Any experiences with it, anyone here? Thanks. > Re: Enablex, see: > [quoted text clipped - 3 lines] > > Steve J Dear Tom, First, thanks for the update. I was looking forward to hearing your "report". . All of this left my confidence in my local urologist somewhat shaken. > Are his treatment recommendations totally off the wall, or has anyone > here had or heard of successful treatment using collagen and/or > Enablex?? This relates to the question you raised early on: "Should I be treated locally or drive the 2 hrs. to NYC"? The answer is, you're probably better off being treated in a good hospital even if it's inconvenient. I've come to believe that if at all possible, people should avoid putting "promixity" at the top of their list when choosing a doctor. I live in Manhattan, where there are plenty of choices, but if we had it to do over again and say, forex, the best doctor was at Hopkins, I would try to persuade my husb. to pick up and go to Baltimore. Other people do it. Sadly, your local uro (and others) may indeed be "off the wall". I was looking thru the archives in this grp yesterday for info about nutrition when I came across a post that described the experiences of 6 (extremely rich) men who had been diagnosed with PC. Keep in mind that these people had had access to the very best medical care. In spite of that, I was amused (and felt "validated") to read the following: "Weinstein's conclusion, after visiting 30 doctors in the U.S. and corresponding with 14 abroad: ``There are 8,500 urologists in the U.S., and 8,200 don't have the faintest idea what they're talking about.'' (See "PC hits on of of six men", 8/16/06.) >>What I'm wondering is if I ought to start looking for another uro... or if I even need a >>urologist. It sounds like you may need follow-up care and if you can communicate with a good doctor by phone and see him occasionally, if necessary, that sounds like a good option. My husband's experience with ED doctors kind of validates this. J. saw 2 docs here in NYC who were just real duds. Then on the 3rd try, he found the right one -- a doc who had "written the book" about this subject, so to speak. What struck me about this whole thing was that JJ had only needed to see the doc twice and that was it. What I concluded from that is that if you want to see a top doc who is not in your neighborhood and you have to be in their office only infrequently, it might be worth the trouble. I think you answered your own question about getting a new doc, Tom. It's really hard to find one without a personal referral. The other day I was looking for some referrals for an ED doc for a guy living in a different state. I looked at Urologychannel.com, the Indiana state uro society, and elsewhere and I found the names of a lot of docs but who really knows what they are like? I just wanted to put in a plug for a book I have used a lot over the years. It is called the Consumer Union's Guide to Doctors", and it is a sort of Consumer Reports for MDs put out by a non-profit org. It gives referrals to so-called "top" docs according to state and specialty, but unfortunately does not list "subspecialties" (e.g, ED, incont., etc). Anyway, I went to the org's website, checkbook.org, and I found out that they have info not only on doctors but on *hospitals* and certain health plans, which could be very useful to some folks. You can access the info online but I would buy the book for $20. It's worth it. [Also, if you live in certain metro areas and need a plumber or a roofer, this is the place.] > Dr. Mulhall, btw, was very personable and clearly is a doctor I can trust. I'm glad to hear it. Somehow, he "sounded" that way on paper. Good luck, Leah Thanks for your kind replies, Leah. You're a support and fount of information, your thoughtful contributions advice genuinely appreciated and helpful. A further update (a milestone perhaps)... I woke up this morning for the first time since surgery on 11/17/06 completely DRY! I'm sure there will be more leakage, such as with physical activity (even walking seems to bring it on), but this is a major first. Tom > Dear Tom, > > First, thanks for the update. I was looking forward to hearing your > "report". [snip] > > Dr. Mulhall, btw, was very personable and clearly is a doctor I can trust. > [quoted text clipped - 3 lines] > > Leah Dear Tom, > Thanks for your kind replies, Leah. You're a support and fount of > information, your thoughtful contributions advice genuinely appreciated [quoted text clipped - 4 lines] > will be more leakage, such as with physical activity (even walking > seems to bring it on), but this is a major first. Dear Tom, I wrote you a long note yesterday, but for some reason it didn't post? Now, I'm in a bad mood bec. I got taken for a ride in the health-food store yesterday but I will try not to take it out on you. I'm glad you had a milestone yesterday. It took my husband 3 mos. to get "dry" and since then he's had few problems. You know, there was an article in the NY times last week about everything in life being pathologized nowadays. ("What's Making Us Sick is an Epidemic of Diagnoses" 1/2/07). Basically, it said that a lot of things that used to be "normal" are now labelled a "disease". Fully one out of 2 americans is "sick" in some way, acc. to the article. Anyway, I just mention this bec. it seems like your recovery is proceeding on course, i.e., "normally," and you might just be "pathologizing" it. It takes time for the body to heal, and with your surgeon's skill, I am confident that you will do well in the long term. I think you are one of the lucky ones with this illness who can endure some discomfort for a while and then forget about pca and move on with your life, i.e., go back to being a "person" rather than a "patient". If your post-op numbers are as good as your pre-op ones, your risk of recurrence is very low. That's probably why your doc doesn't think you need a psa test done that often and I would follow his recommendations. I'm sitting here in dread of opening the mail (husb had a test done last Friday), and believe me, the less often you have to go thru this the better. I know you were upset about the advice your local uro gave you, and I sympathize with you, because one of the worst feelings you can have is that the people you (and all of us) consider authority figures, e.g., doctors, do not know what they're doing (or worse, may not be doing what is in your best interest). So I have some good news: your local uro is not "off the wall" completely. I looked at the Mayo Clinic website and they list collagen injections as a common treatment for incont but they also say it almost never works. So looks like you might have been spared some trouble. I think your incont. will clear up with time, but you might just be interested to know that the Cleve. Clinic and others have had some very good results with some unconventional treatments, such as biofeedback, for some types of incont. Also, talk to Dr. Mulhall about the Caverject. It is known that it can cause "burning" in some people and if there's any of that, trimix or bimix would probably work better. The thing with injections is that it does take a bit of a learning curve to get it right. You once asked me for my husb.'s ED doc's number but somehow that request fell thru the cracks. I think you are in good hands but since I owe it to you, here is the info: Arnold Melman, MD Montefiore Hospital Bronx, NY 10467 718-920-5402 He also has a Manhattan office but in your case, the Bronx one might be more convenient. But if you call, they could will give you all that info. Anyway, I hope things continue to improve for you. You just have to hang it there. Keep us all posted and good luck. Leah > Dear Tom, * * * > I'm glad you had a milestone yesterday. It took my husband 3 mos. to > get "dry" and since then he's had few problems. You know, there was an [quoted text clipped - 3 lines] > to be "normal" are now labelled a "disease". Fully one out of 2 > americans is "sick" in some way, acc. to the article. Leah, You're right about the pathologizing, of course. It is pervasive in healthcare; perhaps more evident in psychiatry than anywhere. However, in the case of urinary incontinence I can't help but feel that it is "pathological" (i.e. a condition of injury or disease). Of course it's true that like many post-traumatic conditions and responses, either emotional or physical, urinary leakage after an RRP is "a normal response to an abnormal situation." Surgery severfely traumatizes the bladder and surrounding organs. Healing takes time, I know, but anything that I can do that has a realistic chance of expediting that process, I'm willing to consider. I'm sure you understand this. > Anyway, I just mention this bec. it seems like your recovery is > proceeding on course, i.e., "normally," and you might just be > "pathologizing" it. It takes time for the body to heal, and with your > surgeon's skill, I am confident that you will do well in the long term. * * * So am I. Thank you. * * * > Also, talk to Dr. Mulhall about the Caverject. It is known that it can > cause "burning" in some people and if there's any of that, trimix or > bimix would probably work better. The thing with injections is that it > does take a bit of a learning curve to get it right. We did talk about it. Because I had already started Caverject (two trial injections with my local uro), he said that I should continue with it, at least for the time being. If I am not comfortable with it, he said, he would change the prescription to Trimix. > Anyway, I hope things continue to improve for you. You just have to > hang it there. > > Keep us all posted and good luck. Thank you again for your supportive and informative posts. When I see your user name in this newsgroup, I always read your comments. Best wishes, Tom Dear Tom > > Dear Tom, > [quoted text clipped - 10 lines] > anything that I can do that has a realistic chance of expediting that > process, I'm willing to consider. I'm sure you understand this. You are absolutely right; I was confusing 2 issues. And of course you would want to do anything possible to treat you incontinence. You're right that "urinary incontence" is a pathology -- it is a condition of injury of disease. But, unlike you, there have been some people here, most notably Gary G., who seemed not to have accepted the reality that incont. and other unleasant things, like ED, are normal, tho (often) temporary, pathologies of the recovery process. Hope things improve soon. Leah Leah, But I do get what you and others here have been saying about patience and giving myself time to heal. I haven't called to cancel the collagen injection yet, but I have no intention of doing it. In fact, what I'm planning on is calling on Tuesday and cancelling both of the upcoming appts scheduled with the local uro, just telling the receptionist that I've decided to hold off for a little while and I'll be in touch. Thank you. Tom > Dear Tom > [quoted text clipped - 25 lines] > > Leah > ... What I'm wondering is if I ought to start looking for > another uro... or if I even need a urologist. Maybe I should just > continue kegeling, etc. and wait for myself to heal. I'll see doctors > Eastham and Mulhall again in four months. > ... > So why do I need a local urologist?? In the 3 years since my radiation treatment I have been examined a number of times, but the main thing that seemed to me to be the key part of my followup care has been the PSA test - something that can be ordered by my regular physician. I'm not any kind of doctor and my advice is worth what you're paying for it, but my feeling is that, unless you're experiencing difficulties that really need treatment, you won't need any more followup than you're getting at Sloan. Just be sure that you get regular PSA tests so that if a recurrence appears you will see it in time for prompt attempt at salvage radiation. Alan My most recent PSA, as of about a month ago (roughtly 30 days post surgery), was 0.00, with neg. margins reported by pathology. Question: After an RRP, how often is it generally recommended to get PSA tested? Or can a generalization be made? Perhaps individual factors are important to consider? Dr. Eastham at MSKCC told me yesterday to come back in four months and that would be the next one I'd need, then six month after that, and then annually (if I remember what he said correctly) for the rest of my life. I've also been told, by a local PCa survivor friend in his 70s (I'm 48) who had radiation/hormone tx, so his situation may be different, that I should have my PSA tested monthly or so, in order to accumulate as many data points as possible. When I mentioned this to Dr. Eastham, he said he thought that was excessive. Is my friend's reported need for frequent PSA testing than what Dr. Eastham says I require a result of differences in the treatments we received, perhaps our ages, or other factors? Or are there different schools of thought on test frequency. Thanks. > > So why do I need a local urologist?? > [quoted text clipped - 11 lines] > > Alan > Question: After an RRP, how often is it generally recommended to get > PSA tested? Quarterly, last I heard . . . and what I do. I.P. >> Question: After an RRP, how often is it generally recommended to get >> PSA tested? > > Quarterly, last I heard . . . and what I do. Like everything else about this disease, your mileage may vary. Best bet is follow your doctor's recommendations. I had a positive margin that the surgeon was mildly concerned about. I had hyper-sensitive PSA tests quarterly for the first year and half or so, then went to semi-annual. Recently, having passed the 6½ year mark with no sign of recurrence, I've been placed on annual PSA/Exam schedule. About the only constant I can think of with the PSA testing is that for the first couple of years you'll experience mild (and maybe not so mild) anxiety while awaiting the results of the test<g> Bob RRP 03/2000 > Best bet is follow your doctor's recommendations. Not blindly. Mine probably killed me, we hear horror stories here every week about incompetent doctors, and peer-reviewed PC literature very often soundly criticizes doctors, including oncologists, for their bad advice. IMO, a pt is well-advised to double-check almost any PC advice with this forum and the resources it recommends. I.P. What you say was also said to me by Dr. Eastham, exactly, and I agreed that my PSA could be tested at my PCP's lab (a large multidisciplinary group practice with excellent modern facilities). Interestingly, a month ago when the local uro told me to get the PSA test 30 days after surgery, he wrote me a scrip (as my PCP could easily have done) and I took it to the lab for the blood draw. I wondered at the time why he didn't have his own staff draw my blood and send it out, but I followed his instruction without questioning... even though it might have saved me a second co-pay (or maybe not). > "mountainguy1958" <mountainguy1958@gmail.com> wrote in message > > [quoted text clipped - 13 lines] > > Alan I know it is way too late at night but the double entendre struck me as hilarious! Bev <SNIP> He prescribed Caverject 2x per week, and 25 mg. of Viagra the other 5 days and told me to stay in regular touch with a nurse practitioner in his office regarding response to these meds. <SNIP> Second entendre unintended. Virtual touch, audio only, with the NP named Joe. Some video or photographic "touch" might behpful, such as for getting the hang of Caverject. I used 5 mcg. last night, as advised by Dr. Mulhall. This was the first I've tried it at home. Resulting firmness was about 3 x 10 -- not usable, but only done "for exercise," so the frustration factor was low. I previously have had two injections in the local uro's office -- one (2.5) had a similar result, and the other (10 mcg.) caused a three-hour painful erection. > I know it is way too late at night but the double entendre struck me as > hilarious! [quoted text clipped - 4 lines] > practitioner in his office regarding response to these meds. > <SNIP> Now it's too early in the morning because I'm reading and I guess I need to read more carefully because I'm thinking 3" x 10" - what the hell is he complaining about? Not useable? Somebody needs to figure out what to do with that beauty. LOL (I always knew those mountain boys had a reputation for being special - now I know why.) Seriously, keep in mind if you need to "drop" that erection you can take a strong decongestant. It should have an effect in 20-30 minutes. If that doesn't work - go to the hospital but make sure you tell them what you took to drop it and how much. When they are done with you, your sinuses will be clear and you'll be so happy (and maybe sleepy) that you will not be able to drive home but you won't be in pain. I wonder what it is about these drugs that causes the pain. Hubby uses Muse and often afterwards he describes an after effect that is a dull ache. The only thing I can think of is that it is a forced filling and then afterwards your body can't exactly figure out what to do because it does and doesn't want to fill. Sort of like mixing espresso and alcohol - do we stay awake or go to sleep? If I remember correctly you have a wife. Would it help if she helped in this exercise program? (A NP named Joe is no fun for most guys.) I'd say go pick up a Playboy Mag for some stimulating reading but there so much for free on the internet. Personally I think it is difficult to raise the necessary state of horniness so that the mind and body are working together when you are too busy trying to make sure you are doing the right thing with a darn needle in your hands, worrying about whether it is going to work, if you are going to have pain, etc. I guess what I'm saying is if you have a willing wife you could turn your exercise program into something more intimate. I know that for guys that means intercourse but a nice touch, feel, play session can be very good for both of you. Also don't forget about oral sex. If that has not been part of your "normal" lovemaking then you might want to talk about it. (Can't do it with Muse - gawk! Muse will leak.) Bev (Who either needs to get her mind out of the gutter or read more carefully LOL) > Second entendre unintended. Virtual touch, audio only, with the NP > named Joe. Some video or photographic "touch" might behpful, such as [quoted text clipped - 13 lines] > > practitioner in his office regarding response to these meds. > > <SNIP> Since you're only a couple of months post-op, it is way too early to be fretting over incontinence. Lots of guys leak up to six months and a lucky few such as myself leak after three years. As a leaker, I looked into collogen (or is it collagen? - I don't know) and apparently it offers only temporary relief. Incontinent women have had these injections too. It's kind of like Botox for wrinkles. The stuff doesn't stay forever and needs to be replaced. The three experts are correct, it's of little to no value. Also, as to drugs such as Enablex and many others, you might find some relief from one or more drugs if your leaking is due only to minor bladder spasms. Relaxing the bladder might help a bit here. Stress incontinence is another matter and only Kegels (if you're a believer - I'm not) can help. I try to look (tongue in cheek) at my leaking as a good thing. Some guys get scar tissue after surgery, can't pee, and have to get reamed out - not a pleasant experience. That's not my problem. Dave Perry > Now about seven weeks post-RRP (11/17/2006), my local urologist > recommended a collogen injection to the neck of my bladder via [quoted text clipped - 36 lines] > practitioner in his office regarding response to these meds. So why do > I need a local urologist?? I'm with Dave here, I'd let some time go by. I know it's not very fun right now, at 7 weeks I was getting over an infection and felt very uncomfortable most of the day. I'd start out in the morning feeling pretty good and by the time I got to work, my butt hole was aching and I'd constantly feel the need to go, not because of a real need but because the reconstruction was still really sensitive. I pushed through it and by the end of 3 months I was not wearing a pad, but I kept them in my desk at work and in my truck. But I never used those pads even though at times my underwear would get a little damp. At this stage my urinary tract was still sensitive and I was uncomfortable a lot of the time but week after week and month after month I got stronger and less sensitive until now at 7 months I rarely feel any discomfort. Living in Denver I've been shoveling a lot of snow and a couple of time I have had some sensation in my scrotum after shoveling the driveway and sidewalks. I also started going to Yoga classes right after I got dry, Yoga is a lot of stretching but you also have to use your abdominal muscles allot which breaks up the adhesions and promotes better urinary control at least it did for me. I'd keep away from sticking anything up your urethra unless there is a really good reason to do so just because that area is still healing. As for the doctor, I'd stick with the office that performed your surgery for the foreseeable future, you are still healing from the work he did and I would not want to subvert his work unless you loose confidence in him. I have to drive across town myself but I don't go that often and I can always call for advice. Slone-Kettering is a big center with a lot of support from what my research showed. I also used a large cancer center The University Of Colorado Cancer Center which also has lots of support systems. My thoughts for what it is worth. Mike > Since you're only a couple of months post-op, it is way too early to be > fretting over incontinence. Lots of guys leak up to six months and a [quoted text clipped - 55 lines] >> practitioner in his office regarding response to these meds. So why do >> I need a local urologist?? Hi Mike. Good advice, and consistent with what you wrote to me back on September 4th: "My surgery was open... I looked for the doctor first and the procedure second." Following this, I took the same approach to treatment decions - finding a world class surgeon (Eastham) who is equally skilled at robotic and open procedures, and then asked which he was more comfortable with and/or which he thought was in my best interest, based on my age and condition. Like yours, he also recommended open conventional surgery. So I have to agree with this reasoning. I'll cancel the cystoscopy and injection, leaving a message that I've decided not to do it just now. The local uro is the best in my rural area so I don't want to burn the bridge, but I believe Dr. Eastham that I don't need a local urologist right now. I spoke with NP Joe for the first time today. Despite a couple of extremely long waits in the waiting room yesterday, I was reminded both yesterday and today what an incomparable hospital MSKCC is - at least in contrast to anything in my immediate area, and what a good choice it was for me. It sounds like you still feel the same way about UCCC Yoga is a great idea that I'd like to try myself. Btw, I lived in a variety of areas around Colorado around 20 years ago. Unforgetably beautiful mountains and people. I loved it, but don't miss the weather. Best wishes, Tom > I'm with Dave here, I'd let some time go by. I know it's not very fun right > now, at 7 weeks I was getting over an infection and felt very uncomfortable [quoted text clipped - 88 lines] > >> practitioner in his office regarding response to these meds. So why do > >> I need a local urologist?? Dave, I'm convinced. Thanks for the perspective. Tom > Since you're only a couple of months post-op, it is way too early to be > fretting over incontinence. Lots of guys leak up to six months and a [quoted text clipped - 55 lines] > > practitioner in his office regarding response to these meds. So why do > > I need a local urologist?? > Since you're only a couple of months post-op, it is way too early to be > fretting over incontinence. I think we've given up on trying to convince him of that. It's just not sinking in. I.P. |
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