Guest guest Posted January 23, 2011 Report Share Posted January 23, 2011 wrote: > ... From the men who have visited my husband with many > different types of PC treatments, they seem to want to brag > they have little incontenence, ED, or shorter penis's! ... One of the questions I've wondered about is how many men are really truthful about the problems they have experienced after treatment. I suspect that the men who participate in groups like this one are a little more candid than the average man. They're here to share information and they may be more open about it. However many men who experience impotence or incontinence are unable to say so to the people they know. They think it would be a black mark against them. And in fact there are indeed people out there who think that a man who has lost his ability to get an erection, or who has to wear a diaper, is somehow less of a man - to be pitied or treated as the butt of jokes. I think this may also account for the wild variation in the reports of impotence and incontinence in the medical papers. If the surveys are truly and believably anonymous, I suspect they report much higher rates of impotence and incontinence than if a doctor asks his own patients face to face about their experience. When a man says to me that treatment had no effect at all on his potency or on any other health issue, I tend to take it with a grain of salt. I think, well ... maybe. Alan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2011 Report Share Posted January 23, 2011 Alan and all I can understand your thinking I've been around this community since 1996 and know that treatment can cause various levels side effects or none. Factors that come into play include the skills and knowledge of the practioner, the actual status of the cancer (sometimes surgeons get a surprise when they get in to the area of the prostate). The side effects of treatment can affect family relationships (eg continence issues, erectile disfunction and hormone manipulation treatment giving lower testosterone impacting on how attentive we are to our partners) All these kick off a vast array of emotions from deep depression to "Hey I'm alive, I'll live with whatever side effects I have". You have also spotted that men may talk down side effect issues. I suppose all we say on the group is study your options, be informed, decide which is the treatment choice for you. Then once the choice is made and the treatment done, don't look back look forward. Worry about what you can change, not what you can't, enjoy life to your best ability. Choose based on which outcomes you want and which side feects you can live with or can be minimised. For every bad story there is a good story about each treatment, often men who have shown no relapse and have few or no problems aren't on these kind of lists. RRP in 1996 various treatments since including radiation, vaccination trial, hormone manipulation (Bicultamide, Zoledex, Diethyl Stilbesterol + Clopidogrel) Side effects ED, continence and effects of hormones. Re: New Member Denny wrote:> ... From the men who have visited my husband with many> different types of PC treatments, they seem to want to brag> they have little incontenence, ED, or shorter penis's! ...One of the questions I've wondered about is how many men arereally truthful about the problems they have experienced aftertreatment.I suspect that the men who participate in groups like this oneare a little more candid than the average man. They're here toshare information and they may be more open about it.However many men who experience impotence or incontinence areunable to say so to the people they know. They think it would bea black mark against them. And in fact there are indeed peopleout there who think that a man who has lost his ability to get anerection, or who has to wear a diaper, is somehow less of a man -to be pitied or treated as the butt of jokes.I think this may also account for the wild variation in thereports of impotence and incontinence in the medical papers. Ifthe surveys are truly and believably anonymous, I suspect theyreport much higher rates of impotence and incontinence than if adoctor asks his own patients face to face about their experience.When a man says to me that treatment had no effect at all on hispotency or on any other health issue, I tend to take it with agrain of salt. I think, well ... maybe.Alan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2011 Report Share Posted January 24, 2011 -- I had a prostatectomy 3 years ago, and went through a mild bout of depression for about a year after that. The best place I know (on the Internet) for discussing post-prostatectomy sexual and incontinence problems is the " Prostate Cancer and Intimacy " ( PCAI ) mailing list on http://www.prostatepointers.org/mlist/mlist.html You (or your husband) might want to participate in the ongoing (sometimes very painful) threads. Prostatectomy doesn't usually cause " castration " . It often -- perhaps usually -- causes erectile dysfunction. _That_, we can often ameliorate. Most doctors aren't expert in that area, and many don't care about their patients' lives after surgery. But there _are_ treatments that work reasonably well, for a lot of men. > > " recently diagnosed at stage T3, I am 59 with a gleason score > 4+3=7 and a > PSA of 5.0 Anticipating radical prostectomy in Feb. " > > I urgently recommend that you slow down and take a critical look > at your diagnosis before selecting a treatment. > > Here's why: A Gleason score of 4+3 is on the fine edge of > high-risk, and I believe that it would be prudent to have the > biopsy specimens evaluated by an expert. Insurance covers the cost. > > Everything that is done from here on depends upon the accuracy of > the Gleason > scoring. It is critical. > > Here is a list of such labs: > > Bostwick Laboratories [800] 214-6628 > Dianon Laboratories [800] 328-2666 (select 5 for client services) > Jon Epstein (s Hopkins) [410] 955-5043 or [410] 955-2162 > Jon Oppenheimer (Tennessee) [800] 881-0470 > Lucia (303)724-3470 > > This is a " second opinion " and should be covered by > insurance/Medicare. The cost, last I heard, was about $500. More > if further tests, which might be prudent, are ordered. > > The chosen lab can give instructions on shipment arrangements. > > In civilized jurisdictions, those specimens are the property of > the patient and not the medic nor the lab. Sometimes it is > necessary to educate them on that point. > > The report of the clinical stage is incomplete. It should read > " T3_, the last position being a lower-case letter such as a, b, > etc. This is also critical. > > But " T3 " clearly means that the tumor has breached the wall of > the prostate gland and that there may be PCa (prostate cancer) > cells loose. This is serious, but not necessarily awful IF proper > tx (treatment) is applied. > > See, generally, the Prostate Cancer Research Institute at > http://www.prostate-cancer.org/pcricms/ and for the clinical > stage matter, > http://www.prostate-cancer.org/education/staging/Pinchot_Clinical_Stage.html > > Caveat! The PCRI strongly states, " T3 disease is not likely to be > cured with RP. Such patients are best treated with prolonged ADT > and with RT consolidation to the prostate and regional tissues. " > > I urgently recommend that you consult a true cancer expert, a > medical oncologist; preferably one who is well-trained in tx of > PCa. Geographically, where are you? > > Regards, > > Steve J > > " Empowerment: taking responsibility for and authority over one's own > outcomes based on education and knowledge of the consequences and > contingencies involved in one's own decisions. This focus > provides the > uplifting energy that can sustain in the face of crisis. " > --Donna Pogliano, co-author of _A Primer on Prostate Cancer_, > subtitled > " The Empowered Patient's Guide. " > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2011 Report Share Posted January 24, 2011 Alan -- > I think this may also account for the wild variation in the > reports of impotence and incontinence in the medical papers. If > the surveys are truly and believably anonymous, I suspect they > report much higher rates of impotence and incontinence than if a > doctor asks his own patients face to face about their experience. I think that's been tested in the field, and found to be correct. If someone wants _honest_ responses, they need to be collected anonymously, by a third party. Patients lie to doctors, and doctors' biases show up in their reported results. Also, you need a decent measuring stick. I went to a presentation last year by a doctor who was setting up a study to track long-term side effects and " quality of life " numbers, for various PCa treatments. [He worked for an institution that offered all the treatment modalities, and wasn't biased for any particular one.] He said he wanted to use " validated scales " . But he _didn't_ want to use the IIEF (International Index of Erectile Function) (which _is_ a validated scale) -- .. . . " It's too narrow, and doesn't really measure the degree .. . . of satisfaction with the patient's sex life " . So whatever he measures, it won't be comparable with what anyone else measures, or has measured in the past. > > > ... From the men who have visited my husband with many > > different types of PC treatments, they seem to want to brag > > they have little incontenence, ED, or shorter penis's! ... > > One of the questions I've wondered about is how many men are > really truthful about the problems they have experienced after > treatment. > > I suspect that the men who participate in groups like this one > are a little more candid than the average man. They're here to > share information and they may be more open about it. > > However many men who experience impotence or incontinence are > unable to say so to the people they know. They think it would be > a black mark against them. And in fact there are indeed people > out there who think that a man who has lost his ability to get an > erection, or who has to wear a diaper, is somehow less of a man - > to be pitied or treated as the butt of jokes. > > I think this may also account for the wild variation in the > reports of impotence and incontinence in the medical papers. If > the surveys are truly and believably anonymous, I suspect they > report much higher rates of impotence and incontinence than if a > doctor asks his own patients face to face about their experience. > > When a man says to me that treatment had no effect at all on his > potency or on any other health issue, I tend to take it with a > grain of salt. I think, well ... maybe. > > Alan > Quote Link to comment Share on other sites More sharing options...
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