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Medical Forum / Diseases and Disorders / Prostate Cancer / January 2006Update on Spouse
For some reason he's far more cheerful than when he went off this morning, he's been nervous for days because of unpleasant experiences he had ten years ago. His PSA is 15, he goes back in two weeks for another sample and a biopsy - under ga.. His scans show a very enlarged prostate, his flow test was slow but scans on bladder and kidneys didn't show anything untoward. Best of all (to him), his swollen scrotum was scanned and showed a condition which sounded like a gadget you'd buy in a plumber's merchant and which I've forgotten. It was explained that the space between membranes round the testis fills with fluid for some unknown reason. It can be drained if it becomes uncomfortable but usually returns. Since it doesn't seem to be diseased he'll live with it. So I'll stick around if you don't mind, and continue learning. Mary > Best of all (to him), his swollen scrotum was scanned and showed a > condition which sounded like a gadget you'd buy in a plumber's merchant > and which I've forgotten. It was explained that the space between > membranes round the testis fills with fluid for some unknown reason. It > can be drained if it becomes uncomfortable but usually returns. Since it > doesn't seem to be diseased he'll live with it. Sounds like a hydrosele. (Pronounced hydro-seal---I can see why it reminds you of a plumbing device.) Claude >> Best of all (to him), his swollen scrotum was scanned and showed a >> condition which sounded like a gadget you'd buy in a plumber's merchant [quoted text clipped - 4 lines] > > Sounds like a hydrosele. THAT WAS IT! Thanks. (Pronounced hydro-seal---I can see why it reminds > you of a plumbing device.) Yes, that's how I saw it in my mind's eye :-) Especially as we've just finished a large plumbing job in the house. Mary > Claude >> Best of all (to him), his swollen scrotum was scanned and showed a >> condition which sounded like a gadget you'd buy in a plumber's merchant [quoted text clipped - 5 lines] > Sounds like a hydrosele. (Pronounced hydro-seal---I can see why it reminds > you of a plumbing device.) Yeah, "monkey wrench" just didn't seem right. >>> Best of all (to him), his swollen scrotum was scanned and showed a >>> condition which sounded like a gadget you'd buy in a plumber's merchant [quoted text clipped - 7 lines] > > Yeah, "monkey wrench" just didn't seem right. And we're not allowed to talk about ballcocks anymore ... Mary On January 26, Mary Fisher wrote, in pertinent part: > Best of all (to him), his swollen scrotum was scanned and showed a > condition which sounded like a gadget you'd buy in a plumber's merchant and [quoted text clipped - 3 lines] > diseased he'll live with it. > The description sounds very much like a hydrocele. I've been there, done that, got the T-shirt. It's pretty much harmless, unless it grows to an uncomfortable size. Information can be found on WebMD http://www.webmd.com/ by searching on "hydrocele." Regards, Steve J > So I'll stick around if you don't mind, and continue learning. > > Mary > > > On January 26, Mary Fisher wrote, in pertinent part: >> Best of all (to him), his swollen scrotum was scanned and showed a [quoted text clipped - 6 lines] > The description sounds very much like a hydrocele. I've been there, done > that, got the T-shirt. And??? > It's pretty much harmless, unless it grows to an uncomfortable size. That's what he feels. > Information can be found on WebMD http://www.webmd.com/ by searching on > "hydrocele." Thanks, I'll have a look. Mary Quoting me: >> The description sounds very much like a hydrocele. I've been there, done >> that, got the T-shirt. >> She responded: > And??? > Huh? Oh, an explanation is desired? First an anecdote: Immediately after my cryosurgery in 2003, which was a total failure except that it destroyed my erectile nerves (a whole 'nuther story), a very pretty young nurse introduced me to the concept of forgetting modesty by observing that my right testicle was apparently swollen due to the procedure, a not-uncommon occurrence. I told her that, no, it was a hydrocele. That was that, except that I still have not forgotten it. Gawd, she was pretty.... <<Sigh>> Anyhow, to the facts of the case: The hydrocele never was an inconvenience. And, because I've been on ADT for over a year, *everything *including the hydrocele has shrunk. It didn't bother me before, and certainly doesn't bother me now. Add the usual caveat: what worked for me might very well not work for anyone else. Regards, Steve J "Well, I've wrestled with reality for thirty-five years, Doctor, and I'm happy to state I finally won out over it." -- James Stewart as Elwood P. Dowd in "Harvey" > Quoting me: >>> The description sounds very much like a hydrocele. I've been there, done [quoted text clipped - 7 lines] > First an anecdote: Immediately after my cryosurgery in 2003, which was a > total failure except that it destroyed my erectile nerves Aww :-( > (a whole > 'nuther story), a very pretty young nurse introduced me to the concept [quoted text clipped - 4 lines] > > <<Sigh>> :-) > > Anyhow, to the facts of the case: The hydrocele never was an > inconvenience. And, because I've been on ADT for over a year, > *everything *including the hydrocele has shrunk. It didn't bother me > before, and certainly doesn't bother me now. OK, this is becoming like looking up something in an encyclopaedia (remember those days?) It's leading to another question. ADT? > Add the usual caveat: what worked for me might very well not work for > anyone else. He's not looking for treatment for the hydrocele unless it becomes uncomfortably large. He's just happy that there's nothing nasty in there. He had the best night's sleep he's had for ages, not worrying any more about what would happen to him yesterday. Mary > ADT? Androgen Deprivation Therapy Also known know as HT (Hormone Therapy) ADT is a better description of the process of taking from PCa cells their food -- testosterone. >> ADT? > > Androgen Deprivation Therapy > > Also known know as HT (Hormone Therapy) Thanks for that, I've not heard of it. > ADT is a better description of the process of taking from PCa cells their > food -- testosterone. How is it administered? Mary On January 27, Mary Fisher inquired about ADT (sorry I didn't define it): > How is it administered? Depends. In the USofA there are generally three types: Lupron: leuprolide acetate. Injected into the buttock. Zoladex: gosarelin acetate. Injected into the lower abdomen. Trelstar: triptorelin pamoate. Injected into the buttock. All have the same effect: suppression of almost all production of testosterone. Also called "chemical castration." They are available in 28-day dosages and in extended-term dosages. I prefer the 28-day because I can control the exact interval between injections. With the longer-term doses, often the insurers control the intervals, even when they are acting contrary to the explicit instructions of the manufacturers. This can often result in a dose being as much as ten days overdue. The long-term doses, so far as I know, are only for convenience, anyway, and there is no medical necessity for them. There are side effects that can be more or less bothersome, depending upon the individual. Look up "Androgen Deprivation Syndrome" on the website of the Prostate Cancer Research Institute at: http://prostate-cancer.org/index.html Or read about it in _A Primer on Prostate Cancer_, subtitled "The Empowered Patient's Guide" by oncologist and PCa specialist Stephen B. Strum, MD, and Donna Pogliano, PCa warrior. More on the medications can also be found on the site and in the book. Regards, Steve J "We must tailor the treatment to the nature of the disease. We must listen to the biology." -- Stephen B. Strum, MD > On January 27, Mary Fisher inquired about ADT (sorry I didn't define it): >> How is it administered? [quoted text clipped - 29 lines] > > Steve J Thank you very much for all that. I wondered if it might be an intravenous delivery (aka chemotherapy) I don't think buttocks are a site for any injections in UK these days. Interesting. I'll have a look at the site you suggest. Mary >> On January 27, Mary Fisher inquired about ADT (sorry I didn't define it): >>> How is it administered? [quoted text clipped - 40 lines] > > Mary "Mary Fisher" asked what ADT is. I hope I don't sound critical, Mary; it's certainly not intended as such, but ... you're asking a lot of questions that just about any PC book covers in detail. We don't mind your asking, nor do we mind answering, BUT ... the implication is that you're not doing the requisite formal studying, and the fear is that there are MANY important questions you're not asking because you don't know to ask them. You may ultimately get a lot of good information here, but: 1. It's piecemeal, as opposed to the logical progression and big picture presented in most books. 2. It's mixed with DISinformation for various reasons. 3. It's often less complete than what's in the books. 4. Only if you ask the right questions. 5. It's a slooooow process, considering your husband's 15 PSA. 6. It's hard to hit your husband over the head with e-mail; a hard-cover book will GET HIS ATTENTION if applied properly to his skull. I.P. > "Mary Fisher" asked what ADT is. > [quoted text clipped - 4 lines] > studying, and the fear is that there are MANY important questions you're > not asking because you don't know to ask them. So I have to read the books and then I'll know everything and not have to bother you? > 6. It's hard to hit your husband over the head with e-mail; a hard-cover > book will GET HIS ATTENTION if applied properly to his skull. That might be the way you deal with people you love, it's not my way. I'll get my coat. Mary >> "Mary Fisher" asked what ADT is. >> [quoted text clipped - 16 lines] > > Mary If you get upset by a very intelligent and well-intentioned suggestion that you do a lot more research on the very complicated topic of prostate cancer, you are in for a REALLY rough time when you and your husband have to deal with the realities of the disease itself. There isn't one person among the regular contributors to this newsgroup who isn't trying to offer the very best advice they can. But as I.P. points out, their expertise varies, they have very different experiences and approaches, and each has chosen his own path. The vast majority of us have started by doing as much research as we can, from as many reliable sources as possible -- primarily books, but websites, lectures and physicians as well. That research, not this newsgroup, should be your main source of information. Put your coat back down and hang around. This is not a time to be hypersensitive. Your husband has cancer, and is likely to be facing surgery or radiation that will dramatically affect his body and his life. When he is trying to figure out how to walk without pissing down his leg, your indignation over I.P.'s straight talk will assume its proper insignificance. Alex > Put your coat back down and hang around. This is not a time to be > hypersensitive. Your husband has cancer, and is likely to be facing > surgery or radiation that will dramatically affect his body and his life. > When he is trying to figure out how to walk without pissing down his leg, > your indignation over I.P.'s straight talk will assume its proper > insignificance. I'm uncertain as to the dx. I think the biopsy came back negative for cancer. I agree with you that no one has shirked her questions. I have never seen anyone come to this NG with a question who has not received an answer. And, I agree with I.P. One of the very few things that all of us agree on is the need to read a book, or two, or three.  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 PSA .07 .05 .06 .05 .08 Non Illegitimi Carborundum >> Your husband has cancer, ... > I'm uncertain as to the dx. I think the biopsy came back negative for > cancer. You've been reading my posts. He had a negative diagnosis ten years ago, he hasn't yet had a biopsy this year. > I agree with you that no one has shirked her questions. I didn't see that stated ... ... > One of the very few things that all of us agree on is the need to read a > book, or two, or three. Yes. NOT just one. And not just books.We must take advantage of all sources of information. Mary > Put your coat back down and hang around. This is not a time to be > hypersensitive. I'm not hypersensitive. Nor do I hit my husband, as was advocated. > Your husband has cancer, er - you KNOW that? You can diagnose from a distance?? You must be a millionaire! > and is likely to be facing surgery or radiation that will dramatically > affect his body and his life. We know that that's a POSSIBILITY. That's not the same as 'likely'. Although 'dramatically' is a subjective concept. We've both been through far greater life-changes. Others might not be able to cope, we can. We also know the effects of surgery and radiation. I have cancer and have experienced both those procedures. I know that I might have to again in the future. > When he is trying to figure out how to walk without pissing down his leg, > your indignation over I.P.'s straight talk will assume its proper > insignificance. It seems to me that the poster was being indignant. He, like you, was telling me what I should do without any of us knowing, yet, a diagnosis. I have made that clear in other posts. Commenting on something out of context doesn't make sense. You are both making assumptions about our situation and our attitudes. I suggest that neither of you reads future posts from me, to save your getting uptight. I want to learn, that's why I came here. If I'm told to stop asking questions and read a book instead there's not much point in hanging around, is there? ... Even if one book had all the answers ... Luckily, most people here have been tolerant, helpful and good humoured, which is why you won't get shot of me as easily as that.I shall merely be more selective in reading posts. Mary Mary, Like everyone here, I certainly hope your husband does NOT have PCa. I misunderstood the thread of messages. My apologies, and best wishes. Alex >> Put your coat back down and hang around. This is not a time to be >> hypersensitive. [quoted text clipped - 40 lines] > > Mary > Mary, > > Like everyone here, I certainly hope your husband does NOT have PCa. I > misunderstood the thread of messages. My apologies, and best wishes. Thanks, Alex, Mary Dear Mary, I, one of many, am very very grateful you are on this group. I am probably more grateful because you're a woman too. Please don't leave even if you get angry. My husband's PSA was 20.1. It put him in the 97% risk for PCa. I hope your husband is in the 30% and that they figure out what is going on, and that it's not PCa. Fortunately, my husband's biopsies found 2 tiny pieces of cancer. I say fortunately only because the biopsy was such a horrible experience for him that its good he won't have to do it again. Many men have negative biopsies and have to keep going back for more as their PSA continue to rise. Of course, most men hardly notice a biopsy; it is not usually bad. That's neither here nor there, I guess. I don't know why they don't use the other tests to find PCa like ProstaScint. When a biopsy comes back negative. > > Put your coat back down and hang around. This is not a time to be > > hypersensitive. > I'm not hypersensitive. Nor do I hit my husband, as was advocated. I have to say, none of these posters seemed uptight to me. Of course, I'm in a different phase than you. The "hitting him over the head with a book" was clearly a joke. The point was well and kindly made about the amount of research needed. These guys appreciate the opportunity to help others and I know they don't mind questions. (Otherwise they wouldn't be watching the newsgroup to see who they can assist.) IP was just concerned that you might not be getting all the resources you need. He's a very comprehensive and analytical person who researches very, very thoroughly. He can be testy, it is true, although I didn't see that in the particular post you responded to. It was weeks, literally weeks, before I felt like I had a handle on the broad picture. I asked a lot of questions that could have been found in books or on the web, if I had the ability to lay my head on a stack of books and absorb them in my sleep overnight. We are both working, too, so its not as if we can study PCa 12 hours a day. At any rate, I am still extraordinarily ignorant about PCa and it has been since 12/18. The amount of overwhelm I have gone through is ---another reason to be grateful for your strength. > > Your husband has cancer, > er - you KNOW that? You can diagnose from a distance?? You must be a > millionaire! Hopefully he is wrong. Like I said, Steve's PSA was a lot higher. > Although 'dramatically' is a subjective concept. We've both been through far > greater life-changes. Others might not be able to cope, we can. Others do cope; everyone copes. For sure, everyone on this list has coped and continues to cope-- and share their experience, strength and hope every day. > We also know the effects of surgery and radiation. I have cancer and have > experienced both those procedures. I know that I might have to again in the > future. So this means you understand the possibility of a long, hard road, and you have experience in that. This is another strength. Certainly you don't need to go out and get books, without a diagnosis. It could be something else. If you did go to PCa sites on the web, it wouldn't hurt. And IF your husband has PCa then I think you will be grateful that you started your learning curve early. Which, actually, you are doing, and doing a good job of. Best wishes and please stick around! love, laurel > Dear Mary, > > I, one of many, am very very grateful you are on this group. I am > probably more grateful because you're a woman too. Please don't leave > even if you get angry. I shan't, I'm not angry. Anger is destructive :-) > My husband's PSA was 20.1. It put him in the 97% risk for PCa. I hope > your husband is in the 30% and that they figure out what is going on, [quoted text clipped - 6 lines] > I don't know why they don't use the other tests to find PCa like > ProstaScint. When a biopsy comes back negative. > It was weeks, literally weeks, before I felt like I had a handle on the > broad picture. I asked a lot of questions that could have been found [quoted text clipped - 4 lines] > 12/18. The amount of overwhelm I have gone through is ---another > reason to be grateful for your strength. > Others do cope; everyone copes. For sure, everyone on this list has > coped and continues to cope-- and share their experience, strength and [quoted text clipped - 19 lines] > > laurel Please accept my apologies for sending a virtually empty reply. I minimised your post intending to answer after dinner but hit the send key too soon when I returned to it.. > I, one of many, am very very grateful you are on this group. I am > probably more grateful because you're a woman too. Please don't leave > even if you get angry. That's when I left to cook. I didn't realise you were a woman. I understand the reason for using noms de plume but they can be misleading - perhaps intentionally. I know two people called Juniper (surnames), father and daughter. He's an environmental activist in a high position and she makes mediaeval shoes. They both grow apples, quinces and medlars and know a huge amount about them, I bought my medlar tree from Sarah. All that's irrelevant to the fact that I have another reason for liking juniper ... I'll leave you to guess what it is! > My husband's PSA was 20.1. It put him in the 97% risk for PCa. I hope > your husband is in the 30% and that they figure out what is going on, > and that it's not PCa. We shall see, we're not in the business of fortune telling. I'll let the group know what happens. > Fortunately, my husband's biopsies found 2 tiny > pieces of cancer. I say fortunately only because the biopsy was such a > horrible experience for him that its good he won't have to do it again. Yes, I understand that it's not uncommon to have a bad experience even though some think it's no more than uncomfortable. I do react defensively when folk suggest that there must be a problem if it causes distress. I have a very low tolerance to pain and can understand anyone else who does. We're all different. > Many men have negative biopsies and have to keep going back for more > as their PSA continue to rise. Of course, most men hardly notice a > biopsy; it is not usually bad. That's neither here nor there, I guess. > I don't know why they don't use the other tests to find PCa like > ProstaScint. When a biopsy comes back negative. I've not heard of ProstaScint, something else to look for. But it might not be applicable technology in UK. Or it could have a different name. What concerns me is that it seems that a negative result from a biopsy does not necessarily mean that there is no cancer present. The cancer cells might not have been hit. If a prostate is very enlarged that could be even more likely, it seems to me. False security which is later shown to be misguided is very sad. > It was weeks, literally weeks, before I felt like I had a handle on the > broad picture. I asked a lot of questions that could have been found [quoted text clipped - 3 lines] > am still extraordinarily ignorant about PCa and it has been since > 12/18. 12/18? > The amount of overwhelm I have gone through is ---another > reason to be grateful for your strength. Well, I've never understood why people think that a diagnosis of any kind of cancer is the end of the world. It's so common, in its many manifestations. I'm not being flippant, honestly, but I thought that the Big C or had been relegated to the past and that we were all more open about it and as a result it isn't so frightening. It certainly doesn't seem to be the taboo word it used to be. The euphemism used to be that someone was "very ill" when they had cancer. It elicited knowing nods and grave faces ... Well, I know that I was never very ill and a lot of people round here don't seem to be either! My worst experience was the after effect of radiation. LOL! I've just remembered that when I was diagnosed with bc someone got wind of it and told my publisher that I'd died. My publisher's got his secretary to ring and when I answered the phone she was so relieved! The publisher was too, but he said that he now had a problem because he'd kept back a whole page of one of his magazines, he was going to ask Spouse for a picture of me and print it with the legend "She's Gone". Now he had to find a whole page of editorial copy to fill. Since I do all his obituaries there was no-one to write anything about me ... :-) Perhaps it's because we're aware that it can be treated in many cases and even if it isn't it's not the worst thing to die of. An 82 year old woman in my breast cancer ward (you're not discharged the same day of surgery here - yet) shocked the consultant by asking how long she had to live - not because she didn't want to die but because she wanted to make sure that the mortgage on her flat was paid off for her son. That's the pragmatic approach. She was way past her biblical span and had (so far) escaped the horrors of Alzheimer's and other like conditions, cancer wasn't among those in her book . >> ... Others might not be able to cope, we can. > > Others do cope; everyone copes. For sure, everyone on this list has > coped and continues to cope-- and share their experience, strength and > hope every day. I was wrong to say that others might not be able to cope but we can. Others often SAY that they can't cope but in reality what's the alternative? We have no choice but to take everything Life sends. >> We also know the effects of surgery and radiation. I have cancer and have >> experienced both those procedures. I know that I might have to again in [quoted text clipped - 3 lines] > So this means you understand the possibility of a long, hard road, and > you have experience in that. This is another strength. It was a fascinating experience. Not always pleasant, in fact sometimes I was in tears because of pain (I said I have a low tolerance) but I think the experience strengthened both of us. It brought a new understanding of myself and others. It didn't make me understand how precious life is because that happened when I had the brain tumour, and that wasn't a bad experience either. I also made some great and lasting friendships I have no reason to complain about anything which has happened in my life although some can't understand that, it hasn't been ideal. Perhaps it's because I'm a Yorkshire woman, we're down to Earth, we see things as they are and don't expect anything more. If we DO want anything more we go out and get it :-) > Certainly you don't need to go out and get books, without a diagnosis. > It could be something else. Well, quite. > If you did go to PCa sites on the web, it > wouldn't hurt. I already have, even before I joined this group. > And IF your husband has PCa then I think you will be > grateful that you started your learning curve early. Which, actually, > you are doing, and doing a good job of. I know. I have no false modesty - another Yorkshire trait:-) Rosbif would understand that! > Best wishes and please stick around! Don't worry, I shall. > love, Thanks for that, Laurel, there can never be too much love. I'm sorry I rambled, it's what I do ... especially AFTER dinner :-) Mary > laurel > "Alex" said > >> Your husband has cancer and Mary responded > er - you KNOW that? You can diagnose from a distance?? You must be a > millionaire! Easy mistake, Alex, when Mary says "[My husband] said that if he's going to die there are a lot of jobs he'd better be getting on with." I suspect many of us were confused. I.P. > If I'm told [by a "hostile" poster] to stop asking questions and read a > book instead If you're referring to my suggestion, it was very clearly a) KEEP asking questions AND b) read some books. And it was worded as hostility-free as I know how to get. I.P. > Information can be found on WebMD http://www.webmd.com/ by searching on > "hydrocele." I've sent it to his computer. He always reads things I send. Mary
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