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Medical Forum / Diseases and Disorders / Prostate Cancer / August 2006If you did it again?
For those of you have been down the PC lane for a while I have some questions with, I guess, no real answers. Knowing what you know now, what if anything would you have done differently prior to treatment? I'm not talking about taking a different avenue for treatment I'm talking about personal things such as telling the children/boss/co-workers about PC, maybe taking a vacation, spending time with your spouse/SO/girlfriend. What was the most difficult thing for you to do? What was your greatest fear and did any of your fears materialize? How do you feel about those fears now? What would you tell your best friend or son to do prior to treatment? Bev > For those of you have been down the PC lane for a while I have some > questions with, I guess, no real answers. Knowing what you know now, what if [quoted text clipped - 6 lines] > you tell your best friend or son to do prior to treatment? > Bev My biggest fear before surgery was that I would wake up and find I didn't have a catheter, presumably because a check of my lymph nodes showed extensive cancer, and the surgery was aborted. Of course, that didn't happen, and for all I know there would have been a catheter there anyway. Also, when I woke up I was pretty spacy from the surgery and my resident immediately told me what had been done before I had a chance to check anything. This is just an example of how when one is in such a situation, fantasies run rampant and one should not take them very seriously. The other bit of advice I regularly do give is not to try to preapre yourself for the worst. You can't really do it, what you fear usually doesn't happen, and in any case it just makes you unhappy. Although it hasn't panned out [yet?], for a single man of 50 w/o children it was not inconceivable that I could still marry a woman young enough to bear a child. Therefore, I think someone should have mentioned even the thought of banking sperm. Other than that, I wish I had not bought the robe and pair of slippers that I only wore once in the hospital. :-) Bill Denton RP 2/12/02 PSA .93 Memphis Bill, I have no idea but are you sure they cannot harvest sperms much like they might harvest eggs? You are still producing swimmers - they just lost their ocean and the tidal wave. But I guess you have to find the right woman first. But if you find the right woman you might want to check with a fertility clinic. Let's see, if you manage fatherhood at age 55, you'd be 73 when that child graduated from HS and 77 at the college graduation ceremonies. Ummm, are you sure you want children? I'll be 65 when my youngest grandchild graduates from college. Wear the robe and slippers; you've got them so enjoy them. Bev > Although it hasn't panned out [yet?], for a single man of 50 w/o > children it was not inconceivable that I could still marry a woman [quoted text clipped - 7 lines] > PSA .93 > Memphis > Bill, > [quoted text clipped - 25 lines] >> PSA .93 >> Memphis Bill, I am 62, and the father of a 17-year-old girl. I suggest you cut to the chase and marry a gal who has a child at least of elementary school age. That way, it won't be all that many years until you have a teenager in the house, at which point you may decide that an early death isn't all that bad an option. (g) Alex Bill, I completely agree after having spent three hours this afternoon with my 12 YO granddaughter listening to rap music and country videos. In that length of time my phone rang 17 times and they were all calls for her. She was in a foul mood because it was that time of the month and she wanted to spend the night with her friend - and I'm just the grandmother not the mother so it was not my decision! May I suggest sending her to visit you for a few days? You just might change your mind about kids. LOL (I know that would not work, she'd come out and be on her very best behavior and you'd think that is the way children always behave.) She had webratsmusic.com going with the Pussycat Dolls song "BEEP" and I really wanted to ask her if she knew what the "ha-ha" was when they sang "while you play with your ha-ha" But I figured I'd be a grandmother and keep my mouth shut. I'm sure she knows about guys playing with their ha-ha. (Of course maybe not, after all we have grown men here who don't understand beating it and now they are not allowed to play with the spammers. ROTFL) I'm with Alex find a good woman with grown kids and an ex-hubby that can afford to send the kids to A & M. That way you get to do all the fun stuff like go to the games and be there to provide moral support. The kids are too old to want a father figure but they'll like having a great guy to do things for them. (Especially if he has a really cool car and he lets them use it on special occasions.) OTOH I know a great gal who is 29 and looking for a really nice guy. She swears they don't exist. She doesn't want children. She's got a Masters degree and a career she loves. There are plenty of good women out there - finding them is a whole 'nother story. Bev Obviously, finding a woman w/ kids is the easiest way to have them [I do think, Beverly, that it is probably physically possible to harvest sperm but it doesn't sound like much fun.]; indeed, it is almost impossible to find an "age-appropriate" woman w/o kids. But there is a man thing about spreading his seed. To make it worse, there are 3 men in my generation of Dentons [all w/ PCa] and only 1 son going forward. He lives up in the Northeast and when my brother and I die, the Denton name will disappear from the Mississippi Delta where we have been for a few generations. That is sad. 29? Send photos! Bill Denton RP 2/12/02 PSA .93 Memphis Email me and I'll send you to her office web site. Matchmaking across state lines. LOL Bev > Obviously, finding a woman w/ kids is the easiest way to have them [I > do think, Beverly, that it is probably physically possible to harvest [quoted text clipped - 12 lines] > PSA .93 > Memphis > Bill, I completely agree after having spent three hours this afternoon with > my 12 YO granddaughter listening to rap music and country videos. In that > length of time my phone rang 17 times and they were all calls for her. She > was in a foul mood Insanity is hereditary. We get it from our children and grandchildren. -- >> Bill, I completely agree after having spent three hours this afternoon >> with [quoted text clipped - 5 lines] > Insanity is hereditary. We get it from our children and grandchildren. > -- Not true. My grandson told his mom on the way out of our driveway today, "I had fun with Grandpa today." Grandkids are great! At least they are at 2½. >I'll be 65 when my youngest grandchild graduates from college. I'm estimating I'll be 90. <g> The youngest was 3 years old this month....and I'm 69. I waited to read the rest of the guy's stories...to tell my own. I was 56 when I found out that I had a 6-7 PSA...from my internist. (I say 6-7 cuz the first was 6.4...then 7 on the follow-up) I had not had a physical for a number of years also...and was diagnosed with Type 2 diabetes at the same time. I was stunned by the diabetes and was told that after THAT was handled...I should see a urologist. I dealt with the diabetes and then found this great group. I had the 7 PSA...had a biopsy...and found out that I had T1c Gleason 3+4=7 prostate cancer. I got all the books...read like crazy...and listened to many of the expert opinions given here. I was divorced, 56, and had a girlfriend. No family or friends...as I had retired almost 10 years prior from Walgreen's as a druggist. I had both of my parents being ill and in nursing homes. I left Walgreens after 24 years, cuz they balked at me taking time off to take care of my folks. I took a leave and never returned. So...both folks passed...and a 100 year old aunt was placed in a nursing home. So when I found out about the cancer...the great folks here mentioned that I had a great doctor in my practice. I sought him out and set up an open RP in March of 2005. My fear...was that I wouldn't wake up. My first surgery...and a little crazy...but due to the other things in my life..I was being treated for anxiety and depression. So...MY biggest fear was dying during surgery. Irrational? Maybe...but I also didn't want to hear... "say goodbye for awhile...you'll see him in a few hours"...etc. said to my girlfriend. THIS scared me more than the cancer...which may have been crazy...but I was numb from anti-anxiety meds. I later thought...if I has a family...how could I have dealt with that scenario? "Say goodbye to dad...or your wife"...I was scared stiff. The anesthesiologist was great cuz when i told him my fears...he said..."forget about THAT happening"..."I have stuff to do this afternoon and it would mess up my day." I felt better. No goodbyes...no nothing...no..."you're gonna get sleepy now"...NOTHING. I was in pre-op...there were a million people around...I was signing papers...they were putting on surgical stockings...and the next thing I knew...I was awake. Other than my girlfriend...the only person there was a high school friend who I hadn't seen in 25 years. Amazing...since I talked to him a few weeks before surgery and he said "I'll be there." And he was. I'm so very grateful to this group for educating me about the books...and all of the support since then. There was no way that "I" could have gone on a trip or 'enjoyed myself'. I was in shock and needed to be sedated...for the weeks prior to the surgery. Not typical...but a true account. Ron B. Chicago Ron, I think that single guys have more problems with the PC and the SE of any treatment because they don't have that built in support system. Even the guys who are unhappily married seem to get through it better than the single (without a partner) guys. Your fears were not irrational. There's a whole lot of people who have surgery and never wake up for various reasons. So yes, you had a valid reason to be scared. How are you doing now? How's the diabetes? I think it is very hard to learn to control it. For most people it is a new way of eating and they feel so deprived of their favorite foods. Bev > I waited to read the rest of the guy's stories...to tell my own. > [quoted text clipped - 88 lines] > > Chicago > Ron, I think that single guys have more problems with the PC and the SE of > any treatment because they don't have that built in support system. Even the > guys who are unhappily married seem to get through it better than the single > (without a partner) guys. MEN'S HEALTH - A SPECIAL ISSUE Why Marrriage is Good Medicine For Men PARADE June 18, 2006 "...so-called `marriage benefit' begines to kick in right after the wedding, then builds. ....At every age, marriage not only protects mens' health, but also prolongs their lives." "Having a partner hellps men with cancer - specifically, cancer of the prostate or bladder - survive longer and with a better quality of life." "Conversely, the patients whose wives did not provide much emotional support fared worse. Which leads us to a harsh reality: Not every marriage is good medicine." "Evidence is mounting dramatically that the QUALITY of a marriage is strongly related to health. In fact, a man who has a secure marriage and continues to be sexually active lives longer, succumbs to illness less often and heals from wounds and surgery faster." "Only secure and happy marriages reap the rewards of better health and longevity." Oh yes.....My memory fails me. I was told also that if the cath was not in the surgery was aborted. When I woke up in Surgery Ward, I was on the moon, my mouth and throat felt like it was a dezzert fire, and I begged for water which never came, I felt down below and felt nothing.....finally after a bit I was given a spearmint popcycle stick. It helped. I could go on. Walking was the best for me. I walked that day, and all the days after. I run now, do ok, still worry about cancer, and am glad I past the RP test. Hello Leonard. Just me, John Loomis >> For those of you have been down the PC lane for a while I have some >> questions with, I guess, no real answers. Knowing what you know now, what [quoted text clipped - 22 lines] > yourself for the worst. You can't really do it, what you fear usually > doesn't happen, and in any case it just makes you unhappy. Leonard, You are one of the most positive people I know; worry doesn't seem to be part of your vocabulary. I can understand your looking closely at the odds and calculating your chances. I'm so glad you have survived PC and are here to help everyone else get through this ordeal. You've thrown me a life line more than once; thank you. Bev > My biggest fear before surgery was that I would wake up and find I > didn't have a catheter, presumably because a check of my lymph nodes [quoted text clipped - 9 lines] > yourself for the worst. You can't really do it, what you fear usually > doesn't happen, and in any case it just makes you unhappy. Hello Beverly, That is a loaded question and answer...... Jees where do you start. 1st of all no man wants prostate cancer either old or young. 2nd, When you find out you have it, and depending on age, a whole world of ideas passes through the mind. Getting past the Prostate Biopsy, and the Rectal exams fine. Finding solutions to the problem not so easy. Telling people also not so easy... The thought of erectile function, and loss of prostate gland.... Wow.... Important aspect to being a man..... I was a younger man and dx'd at 49.....oh what fun. We live in a rural area, and the Dr., retired now, threw a box of kleenex at me with the wife and husband meeting.....I was crying... He wanted to cut off my balls, "Orchimany" or something..... Then he suggested Lupron Depot, and radiation. All antiquated, and yes I did go for that....what a mistake that would have been. I decided to get in gear and drive down to see other Specialist. This is 1999, I was 49, and had a son entering high school, and one entering College. I ended up at Stanford Medical University with Dr. James D. Brooks. He looked at my slides, read my letter, understood my son was entering College at his University. He said, I can help you, and I can do an RP on Nov 17th, 99. I took that invitation. My healing went well, I was up and walking, and working. I did not master the art of erection for 2 years.....I did not pee myself.....right away....Thank Dr. Brooks. I used the pump, injection, and viagra. Now 7 years later, and missing being total, I am very happy I do not have prostate cancer, and do have a great sex life. That is an important aspect for a man I believe. Or I believe it ...... I miss ejaculation lots........my orgasm is small, and quick. I have no complaints.....I am glad to be alive..... John Oh...... Telling the young boy's about this was tough. I undid my robe, and showed them....Show and tell. They saw the pee tube, the bucket, the stiches.... That was not easy for either of us, but figured it was a good way to express the whole process. I do not like to hide things.....Thank God I had boy's and not a girl.... My wife was very supportive, and while during recovery of 1 to 2 years... My wife supported me. I can only be glad for that! To this day and going on year 7, I have to get a PSA test. I had to buy viagra on the internet since I do not drive down to the Bay Area for prescription, etc. I use about 1/3 of a 110 mgs pill. It wakes up willy. I enjoy that aspect, and do miss ejaculation. All the part of sex and men and women... Oh well, rather be sending in my diary, than my death notice.... Wish all you woman with men, suffering with PSA, to take the time, evaluate the diagnosis, and go for the cure. I know I did not do a great job of writing.....sorry. Get tested, take your chances, see a Dr. specialist.... Love your family and wife. Just me. John Loomis > For those of you have been down the PC lane for a while I have some > questions with, I guess, no real answers. Knowing what you know now, what [quoted text clipped - 9 lines] > you tell your best friend or son to do prior to treatment? > Bev Did you tell the boys you had cancer before you had the surgery? Was the oldest still home when you found out or already at college? Father's don't do show and tell with daughters - that's the only difference. It's still just as hard but probably not any harder and maybe it is in some ways easier. Thank you for your thoughts. Bev > Hello Beverly, > That is a loaded question and answer...... [quoted text clipped - 69 lines] > > you tell your best friend or son to do prior to treatment? > > Bev > Did you tell the boys you had cancer before you had the surgery? Was the > oldest still home when you found out or already at college? I told my 3 young sons, (1 out of college, 1 in college, 1 in HS at the time), plus everyone else I knew. We all had fun making jokes at my expense. Death, penis size, no more sex life, everything was fair game. I found it all very comforting that everyone knew what was going on. Since I've been an Atkins guy for 8 years now, when folks came to see me during my recovery, they brought me plates full of corned beef and pastrami and such. It was alot of fun even though I was cathedered.  SignatureJK Sinrod www.SinrodStudios.com www.MyConeyIslandMemories.com > For those of you have been down the PC lane for a while I have some > questions with, I guess, no real answers. Knowing what you know now, what [quoted text clipped - 9 lines] > you tell your best friend or son to do prior to treatment? > Bev No regrets at all. SignatureJK Sinrod www.SinrodStudios.com www.MyConeyIslandMemories.com You sound like my hubby when we were discussing this subject this morning. He said virtually the same thing but I think he phrased it as there was nothing to change. Bev > No regrets at all. > For those of you have been down the PC lane for a while I have some > questions with, I guess, no real answers. Knowing what you know now, what if [quoted text clipped - 6 lines] > you tell your best friend or son to do prior to treatment? > Bev I can think of two things I'd do differently in advance. 1. Read up on PSA many years ago so I'd know it when my primary care doc was incompetent. The SOB may have killed me by ignoring a high and rapidly rising PSA for 2-3 years. I will and DO tell anyone who is or loves a man to watch that man's PSA beginning at age 40, read the first half of a good PC book the minute his PSA hits 2.0, and start grilling his doctor on the book. If that doc's finger is not brown, so to speak (i.e., if s'he's not almost EAGER to do a DRE), I'd consult a urologist at 2.0 to begin defining a baseline. 2. Arrange a better post-op recovery ward, even if it meant choosing a different hospital up front. My week of recovery was an avoidable nightmare because it was in an overworked, institutional VA hospital. Only my surgeon's strong intervention in changing my situation, my awareness of wrong drugs, and my willingness to piss some people off if that's what was necessary kept me healthy and from walking out of that GD place the minute I could walk. I'm still angry almost two years later. I found nothing difficult about it (once out of the recovery ward). What I resent most is the 10-12 months of time the damned disease has taken from me even if I die 30 years from now. I'll resent the end game when it occurs, but that's not a factor yet. I'll get back to you if ADT becomes necessary, any RT goes awry, or mets get ugly. Didn't have any fears that I noticed. When stuff happens -- and it WILL -- I try to apply the Serenity Prayer very pragmatically, evaluate the risks, make some choices, actively manage what can be managed, including the end game in this case, and keep on keepin' on. What I CHANGED (besides diapers) is the pre-PC presumption that I've got 20-30 years left on the clock (I'm 62). I now often pay others to do time-consuming things I could do myself (e.g., I haven't touched my damn sprinkler system in two years now, and a contractor built every stick of my new shop). Our bigger change is my wife's retirement, which frees us up for some long trips. As far as decisions we made after initial treatment, including one very challenging one, we wouldn't change a thing, because we researched and analyzed it so dang much real time that not much COULD happen to affect the validity of that decision. What . . . you expected a SHORT answer? I.P. I think PC has changed your attitude about life in general but do you think it has had a bearing on those you love? Has it changed your relationship with them? For better or worse? Bev > > For those of you have been down the PC lane for a while I have some > > questions with, I guess, no real answers. Knowing what you know now, what if [quoted text clipped - 49 lines] > > I.P. Beverley asked: > I think PC has changed your [I.P.'s] attitude about life in general but do you think > it has had a bearing on those you love? Has it changed your relationship > with them? For better or worse? Sorry this took so long, Beverley. I've been away a lot lately, and wanted to give your excellent question the thought it deserves. I'd be hard pressed to identify a major change in my attitude (I've always been an outspoken and pragmatic geek; nothing new there), but I asked my wife your question in general terms and listened to her speak freely about it. (With no kids or parents, my wife pretty much fills my close circle of "loved ones".) We're aware of no changes in our emotional relationship since learning of my cancer(s). We've been married for 37 years, and reaffirmed decades ago that we really WILL be together until death do we part. If PC is the mechanism or our parting, so be it. Moderate ED had already impacted our sex life, so post-op impotence was not unexpected and was just the final coffin nail in normal sex. She grew up farming and spent her next 30 years as an engineer and manager with an extremely challenging career; she's as pragmatic and self-reliant as I. She's very often faced far bigger alligators on the job than the CHANCE that PC may accelerate my demise, and will face with equal grace and grit that REALITY if it occurs. She's given unwelcome orders to Pentagon generals, had to tell an assistant SECDEF facts he didn't want to hear, and lost both parents in the year preceding my diagnoses, so dealing with cancer is just another challenge in the bucket. She also feared for decades that one day two guys would knock on her door bearing my lifeless carcass (or parts thereof), considering the sports and activities I have always been involved in and the enthusiasm I put into them; PC is a very slow, more predictable, and manageable threat compared to those. IOW, by now she's ahead of the game, and is coasting. She was very involved and informed in the doctor and cancer and hospital research, the options and decisions, every medical consultation, the recovery process, and our subsequent choices. This gave her the same degree of comforting power over my cancer that I have, such as it is. We fought the beast shoulder to shoulder then, and will do so again if and when necessary. In the meantime our primary reminder of the beast is in my pants, not in our hearts or minds. I was touched that my brother joined us from 2,000 miles away during most of my week in the recovery ward. This was our first brush with a bona fide death threat to either of us, and I'm sure his visit strengthened our bond and helped my wife cope. But then my brother and I returned to our own lives and now essentially ignore the fact that I caught cancer first and may thus have to deal with its recurrence first. That's fair; I'm four years older. [I'm also better looking and retired, but he's still working and richer (duh!). It all evens out.] To top it all off, her net income increases when I die. I spend more than my pensions provide, so she gains when I die and my pensions stop. ;-) But, ya know, I do see her working harder to make my life easier, and that's saying a lot given that's always been her nature. I guess I need to go upstairs and tell her again that I notice and appreciate that. I.P. > Beverley asked: >> I think PC has changed your [I.P.'s] attitude about life in general but [quoted text clipped - 4 lines] > Sorry this took so long, Beverley. I've been away a lot lately, and wanted > to give your excellent question the thought it deserves. [redacted] > But, ya know, I do see her working harder to make my life easier, and > that's saying a lot given that's always been her nature. I guess I need to > go upstairs and tell her again that I notice and appreciate that. You didn't answer the question about you, but your wife is one hell of a woman. 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 Non Illegitimi Carborundum >> Beverley asked: >>> I think PC has changed your [I.P.'s] attitude about life in general but [quoted text clipped - 3 lines] >> Sorry this took so long, Beverley. I've been away a lot lately, and wanted >> to give your excellent question the thought it deserves. > You didn't answer the question about you, Actually, I did, on 7/23 in this thread, but only briefly, as I figure MY reactions to my PC are pretty well known by now. > but your wife is one hell of a woman. You're peaching to the choir. Thanks. I.P. > For those of you have been down the PC lane for a while I have some > questions with, I guess, no real answers. Knowing what you know now, what [quoted text clipped - 3 lines] > about taking a different avenue for treatment I'm talking about personal > things such as telling the children/boss/co-workers about PC I read up on it and learned what I could before telling my wife. Then, she and I told our children. Knowing a lot helped both processes immensely. My kids were not even all that concerned until they their aunt at the hospital (she watched my dad die). > , maybe taking a > vacation, Wife and I had a cruise planned for our 25th Anniversary. Literally came home and went to the hospital a couple of days after. > spending time with your girlfriend. I had no time. I was on a cruise. > What was the most > difficult thing for you to do? The bowel cleansing the night before. > What was your greatest fear and did any of > your fears materialize? How do you feel about those fears now? My fears were that the surgery would be harder than the bowel clensing. It was not. As it turned out, I had the easiest job of all. Slept the whole time. > What would > you tell your best friend or son to do prior to treatment? Just that. It's a breeze. It is much harder on the family who is worried you're going to leave; the wife who has to take care of your; and the girlfriend who can't even show up and has to worry from afar. 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 Non Illegitimi Carborundum >>My kids were not even all that concerned My parents told us kids the same way. Honestly, we weren't really that concerned either, although I remember thinking at the time that prostate cancer was "not as bad compared to some of the other cancers". We thought everything would be okay, as he was getting treatment ofr it. That was back in '96. I really didn't read up much on it, until my dad took a turn for the worse. I wish what I knew now, I knew back then. I really think i would have helped him deal with it better, however, he didn't like to discuss it much. Briefly: I failed my first PSA with a reading of 5. I was 46 years old and had not had a yearly physical in a long time, probably 20 years. I was most fortunate to have my PSA tested at a "Health Fair" at work. I was asked by a friend and his wife to have the PSA test, best $5 I have ever spent. So I have never passed a PSA. I was like I.P. Freely the first 2 Doctors that I went to (Internal Medicine) were not very knowledgeable on PSA, PCA, etc. I had read several books and everything else that I could about the prostate and questioned them pretty good on the one and only visit that I had with them. I eventually ended up with a really good Internist and an Excellent Surgeon at a Teaching Hospital that I have a lot of respect for. They would not direct me toward a certain treatment, The Surgeons words were "You have Prostate Cancer and here are the known treatments, Do your research, Make your choice, come back and be prepared to tell me why you made the choice." I chose surgery and have not looked back, that was in 8/99 and the PSA has remained less than 0.1. Now if I were to do it over, I would have been getting a periodic physical, not sure if you need one every year before 50 or not, but at least I would have had a Doctor that I could talk with and trust. I would have taken more meaningful, longer vacations when younger, we tried to stay on budget and live within our means, I should have charged more and paid later. I have had a fairly healthy lifestyle since I was about 40, but prior to that I was a real slob, I would have cut back on the red liquor and cigarettes, not sure if it hurt me that bad but couldn't have helped. Exposure to Agent Orange did not help, but since I was not destined to be President, like Clinton and George W., not sure I could have avoided it. Oh well Beverley, hope this was what that you were looking for if not I just muddled your compilation. Hope all have a good evening. cil > For those of you have been down the PC lane for a while I have some > questions with, I guess, no real answers. Knowing what you know now, what [quoted text clipped - 9 lines] > you tell your best friend or son to do prior to treatment? > Bev > Briefly: > I chose surgery and have not looked back, that was in 8/99 and the PSA has > remained less than 0.1. Haven't heard from you in a year, Max. Good to hear you're still beating the bastard. 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 Non Illegitimi Carborundum > Haven't heard from you in a year, Max. Good to hear you're still beating > the bastard. Sorry about that, Clyde. I guess when your grandson, Max, comes back from vacation and says, "I missed you grandpa", Clyde Lomax becomes Max. > Haven't heard from you in a year, Max. Good to hear you're still beating > the bastard. Well, HELL, Steve . . . we're all (if not on ADT) still doing that. What's that got to do with PC? I.P. >> Haven't heard from you in a year, Max. Good to hear you're still beating >> the bastard. >> > Well, HELL, Steve . . . we're all (if not on ADT) still doing that. What's > that got to do with PC? I don't think I understand your post, but it looks like you're inquiring as to my definitions: CIL found his almost 7 years ago. He had surgery and, to my knowledge, no other treatment. His PSA when last reported was .052 and he reports now that his PSA represents an unbroken string of sub 0.10 readings. I'd say that's soundly beating the bastard. I found mine a year later. For awhile I was beating the bastard. Then it came back, and I nuked it. Then it came and I knew that I did not have sufficient assets to kill it. But, I called in reinforcements and it's been a to and fro battle ever since; one that I'm bound to lose if my people at the skunkworks don't come up with a neutron bomb. Until then, I am merely surviving. Many of us are in that position. But, CIL is beating the bastard. 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 Non Illegitimi Carborundum >> Steve Kramer wrote: >> [quoted text clipped - 6 lines] > I don't think I understand your post, but it looks like you're inquiring as > to my definitions: Given the frequency of references here to DIY sex and your repeated reference to "beating the bastard", I'm surprised my "beating the bastard" comment needs explanation. Hint: it AIN'T about CIL, whatever that is. ;-) I.P. >>> Steve Kramer wrote: >>> [quoted text clipped - 10 lines] > reference to "beating the bastard", I'm surprised my "beating the bastard" > comment needs explanation. Hint: it AIN'T about CIL, whatever that is. ;-) Ha! CIL is a handle for Mr. Lomax. And I completely missed your joke. Don't I feel like a f------- a------! Email me. When were you there? Where were you? Hubby was stationed at Cam Rahn Bay. You know you have VA benefits, don't you? Do you have a son? If so, when do you think he needs to be tested? What would you tell your son-in-law? Bev > Briefly: > [quoted text clipped - 47 lines] > > you tell your best friend or son to do prior to treatment? > > Bev > Knowing what you know now, what if > anything would you have done differently prior to treatment? Nothing. > What was the most difficult thing for you to do? I don't recall anything in particular. > What was your greatest fear Waking up without a catheter because they found something real bad in there. > and did any of your fears materialize? As you know ED is still an issue. I think it's getting better. > How do you feel about those fears now? All my fears were rational. Actually, I don't really like the word "fears", because it suggests something irrational. > What would you tell your best friend or son to do prior to treatment? Get fit, lose weight if you ought to, spend some quality time with your loved ones (we took some long vacations hiking in the mounatins, which covered the fitness and quality time parts). For me the time spent in the mountains put me in a calm, almost spiritual frame of mind; when I went to the hospital, I was completely ready for everything that happened. SignaturePeter Headland It sounds like you have maintained a very positive attitude. Did you make your plans to go to the mountains prior to your surgery because you knew you were having surgery? Bev > > Knowing what you know now, what if > > anything would you have done differently prior to treatment? [quoted text clipped - 27 lines] > went to the hospital, I was completely ready for everything that > happened. > Did you make your plans to go to the mountains prior to your > surgery because you knew you were having surgery? That's it. We were fortunate enough to be able to get reservations at short notice. SignaturePeter Headland Knowing what you know now, what if > anything would you have done differently prior to treatment? Not trusted my internist, who kept telling me my accelerating PSA was a normal part of aging. As soon as I got concerned, I should have gone to a urologist. I had read a lot about PCa when I suspected the possibility. I knew I would have surgery and the local doc, a skilled urological surgeon with a good track record in RP's would do it. The biggest downer for me was finding I didnt have negative margins and that the Gleason went from 3+3 to 3+4. I'm now 4 years out from the surgery (age 68), but I will have to wait 10 years before I can be called "cured". I am happy not having the ultra-sensitive PSA test. "Undetectable" is, at this point in my life, good enough for me. I have been lucky with side-effects. One nerve spared. I am basically continent, but I don't have much "holding" power. For fear of wetting the bed (which I have done three times in 4 years), I sleep lightly and get up 3 or 4 times at night. Erectile function returned after 6 months, and pretty decent with the help of Viagra. Don't miss ejaculations. (Hey, the bed stays drier.). My concern now is what I will do if the PSA starts going up. Don't want hormones yet. Salvage radiation concerns me because I already have minor rectal problems. However, if the PSA stays undetectable for a couple more years, I'm at an age where I might decide to do nothing. Now---for the real unexpected positive. Having a life-threatening disease has made me value each day. It has also put a whole lot of other problems in perspective. I think I've grown and am a better person for it. I never really could "live one day at a time" until I got this disease. Now I can. > Knowing what you know now, what if anything would you have done differently prior to treatment? I definitely would have learned what that PSA test really meant on my annual general lab work reports and had gotten a baseline earlier and tracked it myself instead of my GP. > I'm talking about personal things such as telling the > children/boss/co-workers about PC, maybe taking a > vacation, spending time with your spouse/SO/girlfriend. I would not have been such an open book with most of the people that I've told. I've discovered that some of the those people that I thought that I could have trusted and confided in, as well as my expectation of consolation and encouragement, for the most part have been a huge disappointment. > What was the most difficult thing for you to do? To get past the overwhelming irrational fears that I had of my situation after dx, make a choice of treatments, and which doctor to trust by putting my life into their hands. > What was your greatest fear and did any of your fears materialize? Personally speaking, my greatest fear was death, which obviously did not materialize. Second was a the fear of a botched operation with much physical and emotional suffering. Tied for second, was inoperable cancer. > How do you feel about those fears now? I still have some irrational as well as some rational fears at times, although they are not as overwhelming. Some of the above mentioned fears have since dissipated, but some still remain a concern. > What would you tell your best friend or son to do prior to treatment? Which one of you would like to take my place? Joking aside.... Prior to MY treatment or THEIRS? Prior to MY treatment I would tell them that this is one of life's chapters and that life will go on afterwards, cancer free and cured. Prior to THEIR treatment, ditto. To do their own research, and to draw their own conclusions from that research on proceeding with treatment and choosing the right doctor to perform it. B.A. > I would not have been such an open book with most of the people that > I've told. I've discovered that some of the those people that I thought > that I could have trusted and confided in, as well as my expectation of > consolation and encouragement, for the most part have been a huge > disappointment. In case it helps, consider these observations: 1. Realize that many people are so shocked to learn of another's bad news that they are afraid to say ANYthing. What do YOU say to a friend who has just lost a loved one, for example? It's tough to be comforting when one is very uncomfortable. 2. "Trust"? Trust to do what? "Trust" implies you had a specific response in mind, never a legitimate expectation of other people. 3. Some people get or give encouragement in very different forms than others. The standard "Oh, you'll be fine" and its variants are medically meaningless unless they come from our oncology team, as I recently got re my colon cancer. Now THAT was encouraging, because it was based on medical assessment and thus may be useful . . . but it's still not necessarily a fact. 4. As for consolation . . . I presume my friends are sorry that I have cancer; I don't need them to vocalize it, although it doesn't hurt to hear it. (There are exceptions. We had a case here a year or so ago when a friend all but gloated over a forum member's cancer; maybe that case was yours.) 5. I don't care who in my real world knows I have cancer, or a sore elbow, or a blue shirt, and have zero expectations of their response upon learning those facts. Thus their response cannot disappoint. 6. Similarly, I haven't "confided" in anyone. That implies mystery. I've simply TOLD people, unemotionally and unmysteriously, as though it was that blue shirt or sore elbow. After all, strip this beast of emotions and it's just one more ice-breaker slightly more interesting -- except to sports nuts -- than, "How 'bout them Cowboys?" No one beyond our immediate family under our same roof will give anywhere NEAR the degree of "Damn!" we do about it. I.P. Hi I.P. I think we've both had a discussion about this many months ago about certain unfortunate responses that I've gotten from a few so called "friends and neighbors". Everything from "better you than me", to "I had a dream seeing you in a coffin", (not once, but twice from the same so called good friend.) I'm no diplomat, but I know how to speak to people and communicate in a positive/helpful way as sales is my profession and is paramount to success in my field. Plus my mom raised me better. I've been on the other side of the fence a few times before, and in no way have I ever responded so callously to anyone who was so emotionally devastated as I. Better to say nothing if it ain't nice. To have someone (friends and neighbors) to talk to and to listen was all I was really after during the first few weeks of dx. I can go on, but as I've mentioned a few posts ago, I've found more information, then encouragement here on this ng than elsewhere much closer to home. But I do understand what you are trying to communicate. It was much, much more than passing cavalier remarks made by some who just happen to express themselves that way and knows no better. More mean spirited. There is a difference. You mentioned gloating, perhaps. B.A. > Hi I.P. > [quoted text clipped - 16 lines] > themselves that way and knows no better. More mean spirited. There is a > difference. You mentioned gloating, perhaps. I THOUGHT that was you with those incredible responses from a couple of now ex-friends, but wasn't sure. They sound like pieces of work! I.P. > I think we've both had a discussion about this many months ago about > certain unfortunate responses that I've gotten from a few so called > "friends and neighbors". Everything from "better you than me", to "I had a > dream seeing you in a coffin", (not once, but twice from the same so > called good friend.) I just don't talk much about it. If someone comes to me to ask how my cancer is going, I tell 'em the truth; I wake up every morning converting oxygen and carbon dioxide. Sometimes, I will tell them I had great news; it looks like I'm going to live past my retirement date. Of course, I also have fellow employees with prostate cancer. Those conversations are about the same as those on this NG. Let's face it. If you talk to someone about a terminal disease, they have two ways to go. They can be sympathetic which men hate. Or, they can respond with what they think is humor and most are not very good at that. My path? I talk to my wife about things that are important considering my disease and after it has run its course. I talk to my son about him and his potential tendency. I talk to my doc about treatment. I talk to you all when I need support. 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 Non Illegitimi Carborundum > snip> maybe taking a vacation,> I was diagnosed in December but put off treatment until after we had taken a driving tour of Ireland in April. >> snip> maybe taking a vacation,> > I was diagnosed in December but put off treatment until after we had taken > a driving tour of Ireland in April. I must have the years wrong. I thought you were treated in May '05. Was it May '06? 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 Non Illegitimi Carborundum >>> snip> maybe taking a vacation,> >> I was diagnosed in December but put off treatment until after we had >> taken a driving tour of Ireland in April. > > I must have the years wrong. I thought you were treated in May '05. Was > it May '06? Hey Steve - I was diagnosed in December 2004. Our trip to Ireland, April 2005, was planned and paid for, so I delayed treatment until after we returned. > Hey Steve - I was diagnosed in December 2004. Our trip to Ireland, April > 2005, was planned and paid for, so I delayed treatment until after we > returned. Okay. I had it right. Now, I don't know how I was confused. Maybe another Lupron moment. 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 Non Illegitimi Carborundum >"Steve Kramer" <skramer@cinci.rr.com> wrote... >>> "Beverley" <beverly.brown28@verizon.net> wrote... [quoted text clipped - 9 lines] >2005, was planned and paid for, so I delayed treatment until after we >returned. very wise. we hadn't paid for a holiday for this year, yet; i now find (after operation in april) that i can't face "anything fancy". i don't think i could cope with a "driving tour" of anywhere, even now. SignatureRobin Fairbairns, Cambridge My greatest fear going in was bladder spasms. I had read in the ng about guys that had terrible pain with that, and then I never had one. Good example of worrying about nothing and wasting a lot of time and emotional turmoil for naught. I was more or less healthy going in and no one I knew of in my circle of friends and acquaintances that had RRP had lasting problems except one that was impotent. I went in thinking that I would regain continence within three months. I had ED going in, so impotence was not that big of a surprise, although I think I did underestimate the effect it would have on me long term, i.e., depression. I guess I wish I had been more realistic going in about the side effects, meaning the incontinence. I really did not expect that. Final comment. Telling friends and coworkers about the cancer was very revealing for me. My boss, a guy, raised his hands and cut me right off. He did not want to hear any of the details. Others sat there looking at me with a blank stare as if to say "why are you telling me this". Some that I communicated with via emails never responded to my message about the cancer. Basically there were two people, one female and one guy that appeared genuinely interested and supportive. The guy's grandfather died of PCa, and his father and uncle both had RRP, but both of them are fine without lasting SE's. So be prepared for some strange reactions when you tell people about this happening to you. As my friend said, "don't underestimate the power of that word CANCER". Great question Bev. > For those of you have been down the PC lane for a while I have some > questions with, I guess, no real answers. Knowing what you know now, what if [quoted text clipped - 6 lines] > you tell your best friend or son to do prior to treatment? > Bev The last paragraph of Buttercup's Dad's post stuck home: (snip) > Final comment. Telling friends and coworkers about the cancer was very > revealing for me. My boss, a guy, raised his hands and cut me right [quoted text clipped - 9 lines] > CANCER". > Reactions to my news ranged from friendly interest to indifference. What really devastated me was this: a man whom I had considered for >50 years to be my closest friend (and whose father had died of colon cancer) refused to drive me to the hospital for my first treatment (cryo). He gave several different excuses which all boiled down to "it's inconvenient." I would have done that favor for him in a heartbeat. It was the absolute worst most callous thing anyone has ever done to me. I have had no contact with my ex-friend for over two years and I curse his name daily. OTOH, I gain much soul nourishment by being as helpful as I can to brothers and sisters who are in such distress from this merciless killer. Regards, Steve J "What does not kill me, makes me stronger." --Friedrich Nietzsche Steve, I understand completely. B.A. > Reactions to my news ranged from friendly interest to indifference. One solitary woman at work cared. The only visitors I had were half a dozen friends that I grew up with on the job. Not one person from management visited, called or sent a card. The department director, a few weeks after I was back to work, said, "I heard about your cancer, Steve. I had no idea you were gone or I would have visited." Yessir, I'm irreplaceable! 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 Non Illegitimi Carborundum On July 24, Steve Kramer replied to me: > Not one person from management visited, called or sent a card. The department director, a few weeks after I was back to work, said, "I heard about your cancer, Steve. I had no idea > you were gone or I would have visited." > > Yessir, I'm irreplaceable! > Yup, it's called callousness. Or good business. They will use you until they use you up, then they will throw you away. Regards, Steve J "Be respectful to your superiors. If you have any." -- Mark Twain, "Advice to Youth" > On July 24, Steve Kramer replied to me: >> Yessir, I'm irreplaceable! >> > Yup, it's called callousness. Or good business. Or total incompetence. The useless, chauvinist bureaucrats my wife was unfortunate to work with her past 6 years sidelined her during her last year because her nationally recognized superiority embarassed and frustrated them. Their loss . . . and part of the reason their $70B program is on the skids. She came out ahead when remaining highly visible heads began to roll, and skated into retirement sans the hassles her bosses faced. Unless I knew for a fact that my planned and managed departure would personally harm people in some very small company -- or loved my job -- I'd be hard pressed to keep plugging away at a job I could afford to leave once I encountered a threat to my longevity. I.P. I took early retirement (55) from a job that I found very stressful resulting in panic attacks and skin rashes. Five years later at age 60, the very week I would have started "normal retirement" I was diagnosed with prostate cancer. Had I stayed another five years putting up with all the nonsense I would have had a retirement gift of a positive biopsy. That would have really chapped my hide as they say. As it is, I got a cheap clock that no longer runs and now occupies a landfill and five years of carefree good health (as far as I knew). I survived just fine without them, too bad they survived without me. Come to think of it, maybe the stress started the PCa. Those SOBs. Dave Perry > > On July 24, Steve Kramer replied to me: > >> Yessir, I'm irreplaceable! [quoted text clipped - 15 lines] > > I.P. > I took early retirement (55) from a job that I found very stressful > resulting in panic attacks and skin rashes. Five years later at age [quoted text clipped - 6 lines] > survived just fine without them, too bad they survived without me. > Come to think of it, maybe the stress started the PCa. Those SOBs. I recognized three specific threats to my longevity decades ago, and took a gamble on retiring then, figuring I could bag groceries or write for food later if necessary. I've had ZERO, NADA, NO regrets. Tip: Those threats not only materialized, but apply to all of us: 1. Islamofascism. It became obvious to me 30 years ago with one specific scene on TV, etched in my mind forever. 2. Nuclear (and other WMD) global proliferation. Among my wife's purviews 20-25 years ago were tracking and trying to manage exactly those threats. It was scary and ultimately certain even then. 3. Age. A little bird told me that the older I got, the more likely I was to become disabled or dead. Both are now finite prospects making every day not spent kowtowing to a boss an even greater pleasure. I didn't get a clock, and my wife had to bake my retirement cake, but I DID get 20 years of youthful freedom my still-working peers will never see. It triggers an idea well worth propagating to our children: find a career you love more than sex and/or invest heavily and retire early. I.P. Dave, I did the same. I bailed at 56 and retirement so far it is not too bad. My job was not that stressful but I got tired of the BS. Work your butt off and get the ball rolling a certain way and all is grand, a new leader comes in and all of the previous work is negated and start in another direction. If I get to feeling like I need something to do or miss my old job I call some of me ex-coworkers, or the wife will load me down with honey-dos. I need to work somewhere for 4 quarters to get my Social security (SS) paid, I retired from Civil Service (DOD-USAF) and did not pay SS we had our on CSRS retirement that I paid. Good luck to all.. cil (seems some confusion on cil these are my initials) >I took early retirement (55) from a job that I found very stressful > resulting in panic attacks and skin rashes. Five years later at age [quoted text clipped - 26 lines] >> >> I.P. I too don't receive SS for similar reasons but I need more than 4 quarters to get it so I won't bother to even think about working. Spouse gives me plenty of honey-do's also plus we purchased a large piece of property that always has something waiting. For every item I cross off the to-do list, I add a couple more. But, there's no deadline so who cares. My wife still works, my pension would be adequate for us if she didn't work, the puppy just peed on the carpet, PSA still <0.1, life has its ups and downs but it ain't bad. Now, where are those paper towels? Dave Perry > Dave, > [quoted text clipped - 42 lines] > >> > >> I.P. > Dave, > I retired from Civil Service (DOD-USAF) and did not pay SS we had our on > CSRS retirement that I paid. Wow! Did you know an IP? >> Reactions to my news ranged from friendly interest to indifference I knew from a prior experience not to judge how someone might react to receiving such news, remembering how lousy I was at handling it when a friend told me she had a terminal disease. I was not able to convey my sorrow, offer any support of any kind at all, I just plain sucked-------was wordless, beyond a "I'm sorry" for the hours that she and I were at our class reunion together. I even avoided her for the rest of the night, not knowing what to say. What a dud I was, and she had been a friend years ago. She died a month later. I have kept that exerience in mind when questioning the reactions of others when I have dropped my news on them. I now know that I can set the tone, so to speak, so that even bad progress reports can be delivered such that they are easier to handle by the recipients. > > Yessir, I'm irreplaceable! Hey, are you not the one who recently told others that the good news was that you would be able to live long enough to retire? Or something like that. I just did just that, took an early retirement as of June 30. And nope, it does not help ones ego to see that you truly are easily replaced! But then, it sure has been nice traveling, gardening, working in the woods, doing all kinds of things without counting the hours available before going back to work. So far, I love it. There is even time to exercise, in addition to gaining eight hours of increased exercise just by getting away from the desk. Keep us informed, please, as to your progress with the Casodex, and anything you may be willing to share. I assume that you are still on the Lupron, along with the Casodex? > PSA .07 .05 .06 .09 .08 .132 .145 > Casodex added daily 07/06 > Hey, are you not the one who recently told others that the good news was > that you would be able to live long enough to retire? Or something like > that. Ah, but here's the crux. 1) I enjoy my job... a lot! So, staying on is not a bad thing with me and it is something I do for myself. 2) I look forward to retirement more because that's when my financial plan matures. I am really doing that for my wife. > I just did just that, took an early retirement as of June 30. Congratulations!! Don't know what you did, but if you're happy not doing it, that's the greatest! > Keep us informed, please, as to your progress with the Casodex, and > anything you may be willing to share. I assume that you are still on the > Lupron, along with the Casodex? I am on both and so far, my body has made no notice of the additional medication. 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 Non Illegitimi Carborundum > My greatest fear going in was bladder spasms. I had read in the ng > about guys that had terrible pain with that, and then I never had one. > Good example of worrying about nothing and wasting a lot of time and > emotional turmoil for naught. I thought it was the ball clamps. I'll tell you David, yours was one of more memorable entries into this NG since I've been here. 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 Non Illegitimi Carborundum don't forget the table that bends backwards! > > My greatest fear going in was bladder spasms. I had read in the ng > > about guys that had terrible pain with that, and then I never had one. [quoted text clipped - 18 lines] > Casodex added daily 07/06 > Non Illegitimi Carborundum Here's another, slightly related, thought that has occurred to me many times over the past year or two: I am genuinely and damned glad I'm not young, because I would not want to be forced to face the trials our next generation will face. I am 95% convinced by extensive observation that the global threat we face from Islamofascism far exceeds anything the Soviet Union ever posed except -- maybe -- for one week in '61 and another week in '62, for several very specific reasons. I feel very fortunate to have entered this world (in a cognizant sense; I was born in 1943) after WWII, grown up in the superficially peaceful '50s and '60s, entered the military just as salaries more than doubled, contributed significantly to the Viet Nam and Cold wars without getting shot at, retired from the military just as its freedoms were curtailed significantly, began enjoying full retirement decades ago just in case something like the Shiites hit the global fan, invested very heavily during the booming '90s, and, with any luck, will die of old age before Islamic nuclear weapons strike my country. How my own race between cancer, age, and this threat to the free world will unfold obviously remains to be seen. Couldn'ta timed it better if I'd tried. I.P. > Knowing what you know now, what if anything would you have > done differently prior to treatment? Pound the doctor for every side effect the treatment may produce, whether it's HT, radiation, surgery, or anything else. Find another doctor and get a second opinion. Visit web sites and learn more about options. Find local support groups. Drop any doctor who says he doesn't know of any - he is incompetent and reprehensible. "Beverley" <beverly.brown28@verizon.net> > what if anything would you have done differently > prior to treatment? [quoted text clipped - 4 lines] > spouse/SO/girlfriend. What was the most > difficult thing for you to do? Well I guess it was a little difficult telling my wife and children, but only mildly. The most difficult thing was choosing which of several treatments to choose from. I finally chose radiation which turned out to be the right one for me. This was in 1991 and am still alive. >What was your greatest fear and did any of your >fears materialize? I don't recall having any fears. > What would you tell your best friend or son to > do prior to treatment? Be very certain that you know what the details and treatment choices are for you before making a decision. Warren, peace > Bev > For those of you have been down the PC lane for a while I have some > questions with, I guess, no real answers. Knowing what you know now, what if [quoted text clipped - 6 lines] > you tell your best friend or son to do prior to treatment? > Bev The phone call to my doc for the biopsy results was very difficult, but I got over it and got Dr. Walsh's book, it was a great help. Then getting up the morning of the surgery with no food or water for the past 12 hours and the ride in at 0530 in the dark quiet cold Monday morning in early December, (my doc liked to do these early morning) on my birthday to boot, that was the most difficult part. With support from the good folks here, on this NG, the rest wasn't bad. My greatest fear was being incontinent, that would have been a show stopper for me as I am very active runner and I had thought I wouldn't be able to do that again. My fears did not materialize. I am still doing what I like to do with no problems in that area or the other area either.... This I attribute to the skill of my surgeon. Try as hard as you can to get the best surgeon, if you decide on the surgery route. If anyone is in the twin cities area drop me a email and I'll put you on to a few names. One of them will be my doc. I think he's the greatest. Get the PSA test regularly especially if your dad or brother had/has this stuff. I don't care what anyone says, it's still a good first indicator of something amiss, until something better comes along. Dale j. SignatureEmail: dalej2@mac.com Bev, I think my reaction was typical - I wanted to keep it completely to myself, and asked my wife not to tell anyone. After a few days, and seeing how hard it was for her to not be able to talk to her friends for support, I realised I was being very selfish, and completely changed my mind. I'm glad I did; she got the support she needed, and I found out how great my friends were. I think more difficult was deciding to tell my co-workers. I didn't them them until after the surgery, but I decided that so many people DON'T get PSA checks until it's too late, that it was worth any potential embarassment. I'm glad I did; within a week two people went to get their PSA checked who were in their early 50s and had never had it done. I was worried about the surgery, and have had some complications, but still think I made the right decision, and won't change it. Chris. > For those of you have been down the PC lane for a while I have some > questions with, I guess, no real answers. Knowing what you know now, what [quoted text clipped - 9 lines] > you tell your best friend or son to do prior to treatment? > Bev >> For those of you have been down the PC lane for a while I have some >> questions with, I guess, no real answers. Knowing what you know now, what [quoted text clipped - 9 lines] >> you tell your best friend or son to do prior to treatment? >> Bev Bev, Sure, I've been careful about whom I've told. I figure clients don't need to know, and might react negatively, harming my business and therefore my ability to care for my family. But if I had kept my mouth totally shut I'd have been treated by the (for me) wrong doc. I got my biopsy by a local urologist, who sent it to a local lab. The lab found PCa, and the doc -- not a specialist in prostate surgery -- was ready to schedule me for open RP. All this about a week after diagnosis. I mentioned my situation to a friend, a researcher at a major think tank. He contacted a colleague who does research on medical issues, and she gave me the name of a leading medical team that specializes in prostate cancer. I saw them and for the first time learned about the wide range of options (and of side effects) that those with PCa confront. Given my situation (PSA 5, Gleason 6, small fraction of one needle showing cancer), these docs felt I could take my time to learn more and study my options. All of this came about because of one conversation with a caring friend who happened to be in the right spot to give a lot of help. Alex Thank goodness you opened your mouth and said something. Yes, some times the right people are in the right place when we need them most. Some might call it divine intervention while others might chalk it up to fate, the alignment of the planets or whatever; I don't think it matters why just that it happened. Bev > Bev, > [quoted text clipped - 17 lines] > > Alex Alex: Good point. Kind of a similar circumstance with me about the opening up and talking. Sometimes too much. Although one friend indeed helped me consider my options that I may not have thought about, there were a few people that I wish after the fact that I did not tell. It was hard to tell before, but I guess it did work out for the better overall. B.A. Well, my situation is/was a bit different from most, in that my wife was ill at the same time as I was. I had a routine general check-up in August 2005 - PSA 9. The next PSA test after 4 months showed 19. After doing my research I felt that a RP was a no-brainer - it took 2 minutes with the urologist to confirm that and set the date for the operation. At the time I was caring for my wife who was nearing the final stages of her battle with advanced lung cancer. So my dilemma was - should I delay my op to ensure I could be with my wife at the end or go ahead. In the event I went ahead, discharged myself ASAP and was able to be with her and the family during her last days. The op was on March 8th - I'm nearly continent, and hoping my ED will improve soon. PSA after 4 weeks was < 0.1, so I'm keeping my fingers crossed. I've been quite open about my condition with friends and family - don't regret that at all either. Lots of support - and lots of sad stories of others who have gone through worse than me. David Kinston melbourne.au > In the event I went ahead, discharged myself ASAP and > was able to be with her and the family during her last > days. Wow! That's a lot to cope with in just a few short months. Is there a remote possibility that you are Steve Kramer, photographer, now, or formerly, living in Thailand? Dora > Is there a remote possibility that you are Steve Kramer, photographer, > now, or formerly, living in Thailand? > > Dora Nope. The furthest I've been out of the USA is Jamaica and Mexico. SignaturePSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c |
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