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Medical Forum / Diseases and Disorders / Prostate Cancer / May 2007Sex after RP + RT
Having undergone RP in early December 2006 followed 4 months later by 6 weeks of RT I am interested to find out if anyone out there has gone through this 'Double Whammy' and managed to regain normal sexual functioning again. I would like to hear from anyone interested in responding to this who can advise me what to realistically expect. The doctors involved in my treatment have not been very hopeful that I will ever regain the ability to have a natural erection again. It is with some feelings of guilt that as we live our daily life and death struggles against Prostate Cancer that I am at all concerned about losing my sexual ability when maybe I should be thankful I am still alive and focusing more on fighting this evil disease. The ability to have satisfying sex probably appears relatively trivial to most people compared to the need to stay alive. However, I am what I am and I can't change that and my sexual relationship with my wife is something that is important to me and which I, nor she, was quite prepared to give up just yet. We have tried other ways to engage in mutually enjoyable sexual activities but nothing even comes close to being able to enjoy normal penile penetration and we both miss that. Unfortunately Cialis has not worked for me and I've only had partial success with the 'Gold Standard' self-injections of Trimix even when using .85 cc (almost a full syringe) the last time I tried it. This produced maybe a 75% erection, barely enough for penetration, and that only lasted about 10-15 minutes at most. I've also tried a VED with penis ring and achieved similar results to the Trimix injections, i.e. only partial erections that didn't last long. I have also found the injections to be quite painful and not just a pinprick that I keep hearing about from some other users. This has made me quite apprehensive about continuing with the injections. Maybe this hesitation is why I'm only getting partial erections, it has certainly taken the edge off the excitement of it all. I'm not sure if the pain is due to an adverse reaction to the medication or if I'm just overly sensitive in that part of my anatomy. The pain is not a burning sensation but more of a deep aching as if my penis has been struck with a blunt object and bruised although there are no visual signs of bruising. My Uro suggests it's due to the fact that I've been through Radiation Treatment for the past 6 weeks but I doubt this since I felt pain right from my first injection which was administered before my RT even started. The initial pain was however less than what I am experiencing now but then I started at a much lower dosage of Trimix at just .25cc compared to .85cc now. I cringe at the thought of going to a full 1cc syringe. I am fully aware that eventually I may also have to also undergo HT and if that happens I will no longer even have the desire for sex so I'm told. However, since I'm now just 60 years of age, until I'm forced to succumb to HT I would like to believe I could look forward to a few more years of being able to enjoy a relatively normal sexlife. Perhaps I'm expecting too much but I hope not. Best Regards, Norman P.S. If Bill from New York, Rufus from the U.K., or Heather from Brampton happen to read this message please be invited to contact me again. I had intended to contact you all after my RP but many weeks passed by after I left the hospital in December before I checked my Hotmail messages again only to find all of my saved messages had been cleared out and I lost your contact information. Sorry about that..... Stats: Routine check-up: June 2006 - No symtoms - revealed PSA of 27 @ age 59 Biopsy: Aug 2006 G7 (4+3), T1c RP: Dec 07 2006 G7 (4+3), T3, nerves spared (so I'm told, but havn't actually read report) PSA: 0.2 @ 6 wks; 0.4 @ 12 wks; 0.57 @ 15 wks IMRT: Apr 10 -May 22 2007 @ age 60 >Having undergone RP in early December 2006 followed 4 months later by 6 >weeks of RT I am interested to find out if anyone out there has gone through [quoted text clipped - 37 lines] > >Norman, First of all - yes - you should be thankful being alive and a pillar of your family. There is more to life than sex. That state of mind will also relax you and take away the pressure to "perform" which is part of the reasons of the "problem" I am 67 of age - 2 years after RP. Trimix gets the tool up for 3 hours which is sufficient to enjoy haven twice. Get a Uro who has more experience in the different proportions of Trimix. You may, like myself, at the beginning to use a stronger one. Also the pump is helpful in getting blood into all those corner which were not used for a while. >I am fully aware that eventually I may also have to also undergo HT and if >that happens I will no longer even have the desire for sex so I'm told. [quoted text clipped - 22 lines] >PSA: 0.2 @ 6 wks; 0.4 @ 12 wks; 0.57 @ 15 wks >IMRT: Apr 10 -May 22 2007 @ age 60 Thanks "RR", At least this gives me some hope. I'd be interested to know just how soon after RP you started having good results with injections, what dosage you use, and what Trimix mixture proportions you are on. Thanks again for your advice and any additional information you can provide me on this would be greatly appreciated. For the record, my prescription reads as follows: Triple Therapy 8 mls 4.7cc Papaverine (60mg/2ml) 2.36cc Alprostadil (20mcg/ml) 0.94cc Phentolamine (5 mg/ml) BTW they charge me $160.00 Cdn for this here in Canada! Regards, Norman >>Having undergone RP in early December 2006 followed 4 months later by 6 >>weeks of RT I am interested to find out if anyone out there has gone [quoted text clipped - 102 lines] >>PSA: 0.2 @ 6 wks; 0.4 @ 12 wks; 0.57 @ 15 wks >>IMRT: Apr 10 -May 22 2007 @ age 60 Norman, outliers aside, "normal" function, in the sense of the same as before, is pretty much a thing of the past. I.e. relatively few men are able to have spontaneous erections again w/o physical, as opposed to visual, stimuli even w/o the double whammy. That said, I think most men who were able to before are able to have serviceable erections after primaryTx. Not sure about adjuvant/salvage Tx. Others will chime in w/ their experiences. Bill Denton RP 2/12/02 PSA 1.5 Memphis Hello, Norman: I'm sorry to hear that the surgery didn't clear it all out. I will keep you in my thoughts and prayers about the outcome of the RT. Presumably you'll have a PSA test in July or so? As for erections ... of course it varies, but everything I've read says that even with both nerves spared, one waits nine months to a year before erectile function returns. And you've had RT on top of that, so I'd guess that would slow down the nerves' healing. (As for myself ... LRP in November 2006. I get a very soft one when the wife and I are intimate. Viagra does not help it yet. But I am told that the fact that I do get some physical response is a hopeful sign that the nerve (only one spared) will come back online down the road.) Remember, you are still healing. Try stuff, enjoy what is possible, and be patient with your body. While you may have to eventually give up some of the things of youth, it is not at all clear that you must do so now. All the best, Charlie > Having undergone RP in early December 2006 followed 4 months later by 6 > weeks of RT I am interested to find out if anyone out there has gone > through this 'Double Whammy' and managed to regain normal sexual > functioning again. I only had the RP and am one of the lucky ones that has been able to enjoy some semblance of a normal sex life again. It did take well over a year, and even now at almost 5 years I still see some subtle improvements. That said, sex will never be what it once was. Count your blessing for whatever you get back, whether full or partial, and then you'll really enjoy it when it happens.  SignatureJK Sinrod www.SinrodStudios.com www.MyConeyIslandMemories.com Thanks "JK", I remember reading a previous post of yours about "the Ring is the Thing" and that this had been very successful for you. I have also tried the VED + Ring method but after the ring was slid off the VED onto the base of my penis I had only about a 75% erection which did not last very long. In your post I remember you said something about even with only a semi rigid erection you were able to adjust the placement of the ring in such a way that it really caused the blood to flow into your penis and achieve 'rock hard' erections. I could not understand how you did this from your previous instructions and have tried different ways to repeat your success but have not had any luck with it. I would be very greatful if you wouldn't mind sharing your technique again and explain in more detail how you do this. As you can probably tell I am very frustrated with this ED thing and would appreciate all the help I can get before I totally lose my mind. Thanks again for your support, Norman >> Having undergone RP in early December 2006 followed 4 months later by 6 >> weeks of RT I am interested to find out if anyone out there has gone [quoted text clipped - 7 lines] > whatever you get back, whether full or partial, and then you'll really > enjoy it when it happens. I had an RP then RT 6 months after. Docs told me say goodbye to erections after the RT. Today 4 years later still have solid erections. Mental state is a big part of it. Physical fitness is the other. I took things seriously when they told me I was going to die. Went down to my college weight of 174 from 215 when diagnosed. Stopped eating fats and only ate things that research stated would kill or have an impact against PCa. Really resricted calories while getting into the best of physical shape - endurance - flexibility and strength Followed the Ornish Diet for PCa I guess the payoff is no PCa and erections on a daily basis. I am only 50 and age plays a big part I know. It is possible - but it takes alot of hard work and dedication. I am starting to believe that calorie restriction, eating only healthy foods and fitness is a stronger treatment than anything on the marker. >I had an RP then RT 6 months after. > [quoted text clipped - 15 lines] > > Followed the Ornish Diet for PCa I also believe in the mental thing, but not the rest. Due to physical issues and laziness I am at least 30 lbs overweight, never exercise, eat all the steak, meat, butter and fat I want.... but no sugar and little carbs, and have all the erections I want. I'm not knocking physical fitness, but I don't think it's anything but "busy work" when it comes to PCa. SignatureJK Sinrod www.SinrodStudios.com www.MyConeyIslandMemories.com > I had an RP then RT 6 months after. > > Docs told me say goodbye to erections after the RT. > > Today 4 years later still have solid erections. Mine are not solid. I'd call them "good enough". > Mental state is a big part of it. Physical fitness is the other. > > I took things seriously when they told me I was going to die. > > Went down to my college weight of 174 from 215 when diagnosed. Huh? My weight dropped from 197 at diagnosis to 170. The last 6 months, my appetite has been poor. Two docs said that's a known symptom of cancer. The tumor suppresses the appetite. I've been making the most of that as I did need to lose weight. The docs have cautioned me that the Lupron will lard on some belly pounds. I've been gradually increasing my exercise. > Stopped eating fats and only ate things that research stated would > kill or have an impact against PCa. > > Really resricted calories while getting into the best of physical > shape - endurance - flexibility and strength I'm walking more. Doing stretches and twists when I think about it. I also work out with hand weights. > Followed the Ornish Diet for PCa I looked it up and found some reviews and commentary on the web: "Prostate cancer is, by and large, linked less with deficiency than with caloric overload (the same seems to be true of breast cancer, coronary disease and type-2 diabetes). David Ricketts is well aware of this and his recipes follow his own decision to keep his snacking, especially, "low-calorie and low-fat." Which brings me to the dessert section! Fresh fruit (without any flour, oil, or sugar) can be delicious and nutritious." http://psa-rising.com/eatingwell/beatpcacookbook_review.html I've been snacking on a fresh fruit a couple times a day for the last month. I would really like to get past all this. -kh > Thanks "JK", > [quoted text clipped - 17 lines] > > Norman It's kind of like grabbing the end of a balloon and squeezing the air up to the other end. When you get it as hard as you can, slip on the ring,and make sure it's really tight. The blood has nowhere to go but up, until your done. SignatureJK Sinrod www.SinrodStudios.com www.MyConeyIslandMemories.com > I would be very greatful if you wouldn't mind sharing your technique again > and explain in more detail how you do this. As you can probably tell I am > very frustrated with this ED thing and would appreciate all the help I can > get before I totally lose my mind. Norman, After someone on the group suggested it, I got the Actis ring. See http://www.phoenix5.org/sexaids/other/actis.html. It's very easy to put on, take off, and (most importantly) comfortable. It is made from latex, I think, so be sure neither you nor your wife has any allergy to latex. John > Having undergone RP in early December 2006 followed 4 months later by 6 > weeks of RT I am interested to find out if anyone out there has gone through > this 'Double Whammy' and managed to regain normal sexual functioning again. ... > However, I am what I am and I can't change that and my sexual > relationship with my wife is something that is important to me and which I, > nor she, was quite prepared to give up just yet. We have tried other ways to > engage in mutually enjoyable sexual activities but nothing even comes close > to being able to enjoy normal penile penetration and we both miss that. First of all, thanks for being straight about this and not buying into or repeating the "we find that just holding is more that enough." rhetoric. Holding and cuddling might be enough for some but for others, sex is a big deal and sex involves a firm penis penetrating a wet vagina, rhythmic thrusting, and finishing with a pulsing ejaculation. With that on the table, keep working with your doc and your spouse. December 2006 was not that long ago. You have time for more healing and physiological improvement. I'm going by the reports here as I chose seeds and IMRT, both of which failed. In my case, I lost on the treatment side, my last PSA, just before going on Casodex was 60. I won on the side effects side. Even after 3 weeks on Casodex and 10 days on Lupron (I realize the hormone treatment has not exerted itself yet.) I have 80+% firm erections without Vitamin-V (it's 95+% firm with Vitamin-V or Cialis) and ejaculate a small quantity of semen (It feels like a lot more). Like others, I will be on hormones (ADT) forever but "forever" is defined as until someone, perhaps Dendreon, develops a silver bullet actual cure. This might not happen in my lifetime. If it does and it works for me, then I win a second chance. As I said, I have serviceable erections. I'm fully continent to the degree that I can drink 20 ounces of water and sleep though the night. Back to your situation. You did not say if the surgeon was able to do a "nerve sparing" or what the final path report was like. Some choose surgery because they "want to know". This might give some insight into your chances of recovering erections. > I am fully aware that eventually I may also have to also undergo HT and if > that happens I will no longer even have the desire for sex so I'm told. > However, since I'm now just 60 years of age, until I'm forced to succumb to > HT I would like to believe I could look forward to a few more years of being > able to enjoy a relatively normal sexlife. According to some, while their libido did wane on HT, they can have erections, penetrative sex, and orgasms. -kh Good luck to you. Thanks "KH" for your support on this, glad to hear I'm not the only one for whom sex is still 'a big deal'! I much appreciate your feedback...... you have given me some renewed hope for the future. Best Regards, Norman >> Having undergone RP in early December 2006 followed 4 months later by 6 >> weeks of RT I am interested to find out if anyone out there has gone [quoted text clipped - 58 lines] > > -kh Good luck to you. >Having undergone RP in early December 2006 followed 4 months later by 6 >weeks of RT I am interested to find out if anyone out there has gone through [quoted text clipped - 12 lines] >relationship with my wife is something that is important to me and which I, >nor she, was quite prepared to give up just yet. Ain't it the truth!! Not everyone reacts the same to the loss and as much as the "I want to live" is foremost in your mind going into this, once you are in the recovery stage some things that were not the major concern before become important again. To pretend they are not important is silly. Do what you can to make it work while trying to accept that things may never be quite the same. Philosophizing aside, I think part of your problem with the Trimix is that you shouldn't be using trimix right now. It has been found that in Prostectomy patients that for about the first two years they are very susceptible to penile pain with the trimix formula. For that reason most docs will us bimix during that period. The downside is that bimix is less likely to work as well as the trimix does. However, the lack of pain may make up for the lowered effectiveness!!! So try and get a bimix Rx to try. After the two years you can try trimix again or even quadmix and my not have the pain problem. My experience is that it is VERY hard to find a truly competent ED specialist that really knows the ins and outs (no pun intended) of all these issues. It seems to me that there is simply not enough money to be made in doing ED work for a URO to make it their main specialty to the exclusion of other URO stuff. > Having undergone RP in early December 2006 followed 4 months later by 6 > weeks of RT I am interested to find out if anyone out there has gone through [quoted text clipped - 62 lines] > PSA: 0.2 @ 6 wks; 0.4 @ 12 wks; 0.57 @ 15 wks > IMRT: Apr 10 -May 22 2007 @ age 60 Dear Norman, When someone tells you this is a mental thing as well, believe me, after working with my husband it is hard to keep hubby mentally positive. So your mental state is 100 % important. Ike had RPx 7/18/2002. It took a little while, but between the two of us, no pills or outside stimuli, we managed with a shorter but still hard erection and we are now 69 and 66 and a little Vaseline. His PSA started to rise in 9/06 and is now in the middle of of his RT and he , we still can as of a few days ago. We are about a week or more active. I hope this helps, I almost went nuts with him because his mental attitude was give up. The doctor said , why worry, at the beginning of RT, your already impudent and I said no he isn't. The doctor said this should do it then, but IT HAS NOT, MIND OVER MATTER. . Please hang in and I hope you and your wife have the same luck as us so far. Charlotte Dear Norman, >>>Having undergone RP in early December 2006 followed 4 months later by 6 >>>weeks of RT I am interested to find out if anyone out there has gone through >>>this 'Double Whammy' and managed to regain normal sexual functioning again. I just got this the other day and it is topical so I am forwarding it to you. It sure cheered up my husband. He had RP in 10/05 and will have RT in about 2 wks @ MSK. In response to your question there are people out there who are doing well. It's interesting that when it comes to RT my impression is that doctors are very cautious and will lay out the worst-case scenario. It was just the opposite with the surgery. [--From Bill M.]: "Surviving is what you make of it. Try not to pay attention to what "they tell you". I had surgery (RP) and salvage radiation at MSK. Good hospital but it is kind of a factory. Anyway before radiation they told me I would most likely lose my sexual function. I didn't. They also told me I would not want to continue with my triathlon competitions (swim, bike & run), wrong again. I completed three races with 3 months of completing 8 weeks of radiation (including placing second in my age group in a race 4 days after completing radiation) and never missed a day of work. This year I continue my life style." (A few words redacted.) Also, husb and I hate the word "survivor"; it implies that you are hobbling along. The above person is doing more than that, he is living "strong", winning. >>>>I would like to hear from anyone interested in responding to this who can >>>>advise me what to realistically expect. The doctors involved in my treatment >>>>have not been very hopeful that I will ever regain the ability to have a >>>>natural erection again. I asked the doc about the chances of spouse functioning sexually after RT *with injections* as he has been doing. Doc seemed noncommital so I pressed him for some explanation. He said, "The problem is vascular". Now what I am telling you is pure speculation based on about 15 minutes of research on cornellurology.com. The problem my husband and many men get from RP is that their erectile nerves are damaged and their brain can't transmit the signals to the penis to fill up with blood when they are excited. It's a "wiring" problem. The doctors get the "engine running" by injecting something directly into the penis that causes blood to flow into it and the chambers to fill up with blood. My guess based on what I read at the above site is that the "vascular" problem means damage to the "container": The tissue of the blood vessels or the chambers of the penis may become degraded by the RT and may not be strong enough to produce a workable "valve". The organ will leak. So no matter how much of the "elixir" you inject it would not help in this scenario. This is pure conjecture on my part. But I would rather find out what the problem is then go banging my head against the same wall. **Ask your doctor! >>>> maybe I should be thankful I am still alive and focusing >>.>more on fighting this evil disease. The ability to have satisfying sex >>>probably appears relatively trivial to most people compared to the need to >>>stay alive. There is no need to apologize about being normal. Many men in your situation will get the "Dead men don't have sex" rejoinder. The truth is we don't know whether they do or not. I imagine men in heaven having sex and eating all day. And if you are a Muslim martyr you will have 70 virgins to occupy you. Seriously, sex is not the only thing in life but there is no reason for you to give up at this point. It's way to early. What you must do is get yourself to a world-class ED specialist, not just a urologist. I have read so many msgs by men who have struggled for a really long time to get the Trimix dose right because they had been treated by inexperienced doctors. Start with sexhealthmatters.org. They list the very top people in the US * and Canada *. The thing to do is to interview some ED specialists and find one that you like and who knows the business. It took my husband 3 tries. Just FYI, after my husband finishes rad at MSK he will be referred to the resident "sexpert" for follow-up, in this case Dr. John Mulhall. You want to be treated by somebody of his caliber or of my husband's doc, Arnold Melman. It may be worth it even if you have to travel to get it. My husband has had to go to the doc only twice. At first mtg doc gave him Trimix. The dose was too high and guess what -- he developed the exact same symptoms you've had. I just ran this by my husb and the way you described the soreness is practically "channeling him." And he has not had RT yet. I think after my husb got the dose right he did not have this problem. It happened 2 or 3 times altogether. >>>and I can't change that and my sexual relationship with my wife is something that is important to me and which I, >>>nor she, was quite prepared to give up just yet. We have tried other ways to >>>engage in mutually enjoyable sexual activities but nothing even comes close >>>to being able to enjoy normal penile penetration and we both miss that. Get the expert help. Many men retain potency after RT. If not you can pursue first-line remedies such as injections or VED. If that doesn't work there are other tx such as penile implants. This may seem unappealing but I have never read a bad word about them, it seems the customers like them. I have already considered that husb and I may not be able to have conventional sex at some point but we will have to cross that bridge. Sure it would be a blow but that doesn't mean our life would have to fall apart. Here is a little "validation" for your (normal) desires from the poet P.B. Shelley: Love's Philosophy The fountains mingle with the river, And the rivers with the ocean; The winds of heaven mix forever, With a sweet emotion; Nothing in the world is single; All things by a law divine In one another's being mingle;-- Why not I with thine? etc. >>>I'm not sure if the pain is due to an adverse reaction to the medication or if I'm just overly sensitive in that part of my anatomy. The pain is not a burning sensation but more of a deep >>>aching as if my penis has been struck with a blunt object and bruised >>>although there are no visual signs of bruising. My Uro suggests it's due to >>>the fact that I've been through Radiation Treatment for the past 6 weeks but I>>> doubt this since I felt pain right from my first injection which was >>>administered before my RT even started. Could be the uro is right. The body needs time to heal. Dr. Scardino compares the tx to a "concussion". As I said your pain sounds classic for a too-high dose of Trimix. The fact that your doc doesn't know this is cause for concern. You will have to consult a competent person to see whether this tx will likely work for you. Also the pump works well for a lot of people but I'm not familiar with it. >>>I could look forward to a few more years of being >>>able to enjoy a relatively normal sexlife. Perhaps I'm expecting too much There is no cutoff for having a good sex life. I told my husb after reading these lists that I was shocked that people have sex when they are very old. He replied, "That's encouraging". In general husb and I are feeling very good. This is a change. A few months ago when I found out about husb's recurrence I was a basket case. I was walking into trees, losing a lot of weight without enjoying it and feeling hopeless. What changed everything for me was a *concept* I borrowed from the English writer CS Lewis who found love in middle age only to find out that his wife had incurable ca. They did have 7 years together. Lewis wrote in "A Grief Observed" how he and his wife managed to get over their "dread" of the ca and enjoy their life fully, literally to the last minute. (He said the best conversation they had was talking continuously thru the night the day before she died.) Anyway, this is hard to explain and it may not be for everybody. But here is is his secret as I understood it: If you have ca (or your partner does) you have 2 choices. Most people will: "Live with Cancer" That means the person's whole life will be touched by the disease. They may feel themselves damaged or think the future is bleak. The person and the disease are inseparable. The alternative is to: "Live!" "(with Cancer)" Lewis explains that life by definition is made up of good and bad things. So as he saw it he and his wife were "living life" while having a big debit in the ledger. He was not denying the disease at all. The way he saw it the cancer was just in the mix. That still gives you the chance to pack as much as you can into the "Assets" column. "Living with cancer" can break somebody because this disease carries so much baggage. In reality, most people are burdened with all kinds of problems but they see the problem as "divorced" from themselves. A person may have diabetes or heart trouble or whatever and they will think, "I have a chronic disease", not "My life is over". In my husb's case he is in good health, looks good and can do everything another person can do. If you look up what are the biggest stressors in life you will find things like Unemployment, Bankruptcy, Divorce, Life Changes at the top of the list. Cancer is not even there. I can attest to this because unemployment and financial problems is what threatened to break my husband, not ca (he has also had a melanoma). Husb defied the odds and started a new career at 53. He got his first good assignment one month after he was dx. Now 2 years into it he is very good spirits cancer notwithstanding because overall his work life is going well. And it doesn't hurt that he works as a medical writer/editor. He has been reviewing materials about MS for some time now and that makes him want to go home and hug his PC. We recently went on a brief vacation (to Canada) and I implemented this new philosophy. I set the ca apart from ourselves. I realized that we were the same couple we were 3 years ago when he didn't have the disease. Fundamentally we or our marriage were not different. So I enjoyed myself as a person living fully while having a serious problem. Anyway, this made all the difference. Sorry to chew your ear off. You sounded a bit down. A much worse problem is when you stop desiring things. Good luck. Leah A much worse > problem is when you stop desiring things. BRILLIANT summation. Thankyou. Hughie. > Dear Norman, > [quoted text clipped - 214 lines] > > Leah Thanks Leah, Wow! What can I say.......... I didn't expect such a strong and warm response as this. It's so very nice of you to take the time to write something like this, and you are right about me feeling "a bit down". Don't get me wrong though, I'm not giving up...... just very frustrated at not really understanding what is going on in my body and why it is not functioning the way I expected it to. I've never had a single incidence of ED in my entire life and quite honestly didn't think that I would have much trouble recovering full functionality fairly quickly after RP especially since my sexual desires are still as stong as they ever were. I just don't buy into that 'it's-all-in-the mind' rhetoric that some people talk about, at least not in my case. Here I am almost 6 months after RP and I'm still so totally impotent I just can't believe it, absolutely nothings happening down there and I am just feeling devastated by this. Like I said before I'm not giving up...... quite the opposite in fact! The reason I posted on this NG was to hear from wonderful and understanding people like you and the others who have responded to this thread so I could get further insights, ideas, and directions on what courses of action I should persue next. Believe me, I have been through this with my Uro and the Rad Onc. but either I'm not explaining my questions very well or I'm not understanding their anwers but basically I'm not getting the answers to simple questions like "exactly will radiation affect my ability > Dear Norman, > [quoted text clipped - 214 lines] > > Leah Thanks Leah, Wow! What can I say.......... I didn't expect such a strong and warm response as this. It's so very nice of you to take the time to write something like this, and you are right about me feeling "a bit down". Don't get me wrong though, I'm not giving up...... just very frustrated at not really understanding what is going on in my body and why it is not functioning the way I expected it to. I've never had a single incidence of ED in my entire life and quite honestly didn't think that I would have much trouble recovering full functionality fairly quickly after RP especially since my sexual desires are still as stong as they ever were. I just don't buy into that 'it's-all-in-the mind' rhetoric that some people talk about, at least not in my case. Here I am almost 6 months after RP and I'm still so totally impotent I just can't believe it, absolutely nothings happening down there and I am just feeling devastated by this. Like I said before I'm not giving up...... quite the opposite in fact! The reason I posted on this NG was to hear from wonderful and understanding people like you and the others who have responded to this thread so I could get further insights, ideas, and directions on what courses of action I should persue next. Believe me, I have been through this with my Uro and the Rad Onc. but either I'm not explaining my questions very well or I'm not understanding their anwers but basically I'm not getting the answers to simple questions like "exactly will radiation affect my ability > Dear Norman, > [quoted text clipped - 214 lines] > > Leah Thanks Leah, Wow! What can I say.......... I didn't expect such a strong and warm response as this. It's so very nice of you to take the time to write something like this, and you are right about me feeling "a bit down". Don't get me wrong though, I'm not giving up...... just very frustrated at not really understanding what is going on in my body and why it is not functioning the way I expected it to. I've never had a single incidence of ED in my entire life and quite honestly didn't think that I would have much trouble recovering full functionality fairly quickly after RP especially since my sexual desires are still as stong as they ever were. I just don't buy into that 'it's-all-in-the mind' rhetoric that some people talk about, at least not in my case. Here I am almost 6 months after RP and I'm still so totally impotent I just can't believe it, absolutely nothings happening down there and I am just feeling devastated by this. Like I said before I'm not giving up...... quite the opposite in fact! The reason I posted on this NG was to hear from wonderful and understanding people like you and the others who have responded to this thread so I could get further insights, ideas, and directions on what courses of action I should persue next. Believe me, I have been through this with my Uro and the Rad Onc. but either I'm not explaining my questions very well or I'm not understanding their anwers but basically I'm not getting the answers to simple questions like "exactly will radiation affect my ability > Dear Norman, > [quoted text clipped - 214 lines] > > Leah > .... I just don't > buy into that 'it's-all-in-the mind' rhetoric that some people talk about, > at least not in my case. Here I am almost 6 months after RP and I'm still so > totally impotent I just can't believe it, absolutely nothings happening down > there and I am just feeling devastated by this. ... 6 months is still very early. Did the surgeon do a "nerve sparing"? What about the margins? >...Believe me, I > have been through this with my Uro and the Rad Onc. but either I'm not > explaining my questions very well or I'm not understanding their anwers but > basically I'm not getting the answers to simple questions like "exactly will > radiation affect my ability I've also noticed that they don't like to talk about it directly. Perhaps it's because they don't know. Everyone is different. It's a gamble. You know what you have to do. Be patient, there are reports that healing can take up to 2 years. With luck, one morning, -Sproing-oing-, salute the flag! If it takes another 6 months, so be it. Work on the rest of your health. I lost over 25 pounds. Diet, exercise, cardio and strength training, rest, play, you know the drill. Keep at it. The more the blood flows, the better the chance of recovery. -kh keep pullin' Sorry about that............. seem to be having some kind of glitch here, not sure why those messages got sent before I finished writing. I'll try and complete this again, see below: Thanks Leah, Wow! What can I say.......... I didn't expect such a strong and warm response as this. It's so very nice of you to take the time to write something like this, and you are right about me feeling "a bit down". Don't get me wrong though, I'm not giving up...... just very frustrated at not really understanding what is going on in my body and why it is not functioning the way I expected it to. I've never had a single incidence of ED in my entire life and quite honestly didn't think that I would have much trouble recovering full functionality fairly quickly after RP especially since my sexual desires are still as stong as they ever were. I just don't buy into that 'it's-all-in-the mind' rhetoric that some people talk about, at least not in my case. Here I am almost 6 months after RP and I'm still so totally impotent I just can't believe it, absolutely nothings happening down there and I am just feeling devastated by this. Like I said before I'm not giving up...... quite the opposite in fact! The reason I posted on this NG was to hear from wonderful and understanding people like you and the others who have responded to this thread so I could get further insights, ideas, and directions on what courses of action I should persue next. Believe me, I have been through this with my Uro and the Rad Onc. but either I'm not explaining my questions very well or I'm not understanding their anwers but basically I'm not getting the answers to simple questions like "exactly how will radiation affect my ability to have erections?". All I get in reply is oversimplied answers such as "after RP radiation will likely cause further damage and the chances at your age that you will be permanently impotent are greater than 70%". The Rad Onc said that he was primarily focussed on treating the disease, and that is probably the way it should be, but at the same time I just feel that these doctors just don't care enough about the overall well-being of their patients and I wish they had a more holistic approach to their profession. Thanks again for your support and please keep us posted about your husbands progress, I would like to know how he responds to the treatment. Having just completed RT myself it is too soon to know what the results are, I have an appointment with the Rad Onc. on Aug 13th. and am scheduled to have a PSA test done the week prior to that. I'm getting nervous already wondering what the results will be. Best Regards, Norman > Dear Norman, > [quoted text clipped - 214 lines] > > Leah
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