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Medical Forum / Diseases and Disorders / Prostate Cancer / May 2006Post HIFU - latest report
Hi all Continued report post HIFU operation. T2b-T3b NO MO Gleason 4+5 Detailed explanatory see my post (as "Mike") 15th March Hi Ho I'm for HIFU For an introduction to HIFU and all things prostate: http://www.drmarc.co.uk/ Detailed description on: http://www.prostate-cancer.org/education/novelthr/Chinn_TransrectalHIFU.html Recapping, HIFU operation was April 10 and the temporary catheter came out 26th April. I had no great dramas the time the catheter was permanent. I'll go into a little detail about catheters post HIFU, as I'm extremely squeamish about them - have always shut my eyes in past when it's been inserted by nurse. It may help any fellow "squeamers" to know it's not so tough. The "flexi-valve" catheter (turn tap on/off -no bag) was excellent. You get the same feeling "you want to go" as though you didn't have a catheter. You just go to the loo and turn the tap on. But the docs didn't want me to have a night bag, which would have been possible (think that was to do with infection possibilities) which meant I had to get up at night. The main problem was my frequency - four times a night -even five. Went back to UCHL to have the catheter out, which was very easy, and advice on looking after myself.. But the night frequency has continued. So I am very tired. Seeing my GP today and hope to learn how soon frequency may become more normal. It's not a usual post-HIFU consequence. I've been tested for a bladder infection which may be the culprit -should know result today or tomorrow. I was shown how to self-catheter, and soon got over my nervousness. Single use catheters. You open their bag, put water in, the soaking creates a very slippery catheter tube. I've had to use it about four or five times - mostly at night when the aftermath "debris" blocking of post HIFU is most likely to occur. It goes in with only a little discomfort. I was surprised at the length of it. I did have a problem with the last few inches before a flow started. I have had to grab the slippery tube a bit like an all-in-wrestler strangling somebody and give it a good shove. My incentive was that I was busting to go. It hurt a little - momentary and bearable. This apparently is possible when it enters neck of bladder. Excellent liaison nurse Daphne at UCHL sent me different type of catheter with slight bend at the end to sort the problem out. I haven't used one yet because of the possible infection -but not needed to either. Coincidentally, I've just noticed Clarence's comment that he won't self-catheter because he hears so many get an infection. So I may even listen to our Clarence and only use the new one when I really block. That has happened once. The other times I used the catheter was when my stream has been very intermittent and seemed likely to come to a standstill and i was advised i should catheter. I may not be blocked very much more. When I returned home with my fixed catheter my (local) nurse did a bladder wash to show me how to do it myself. She told me some debris showed up in the wash. Maybe that was it. My UCLH onc. link - by email - very nice nurse Jane, advises me that not all HIFU patients get blocked. My stream is quite often steady - albeit not with great force. No pain. Other times it is intermittent. As I've noted before, there are two or three months to go before everything settles down post HIFU, and the docs can properly assess my condition. I think that about summarises me to date. I also have some persistent lower back pain (but that could be the "normal" sort - how can one tell the difference?), my memory and concentration is getting a bit knocked, my energy is low and walking rate is slow (I'm normally quite briskish!). But my four-hour HIFU op was followed by quite a longish time in recovery - think I got a bit over-anaesthetised -just my guess. (My breathing wasn't great and I was woozily aware they were doing a lot of tests on me including X-rays. Somebody said from planet Mars, or so it seemed, "You have some fluid on your lungs". I remember being aware enough to think, "Why are you telling me? What the f am I supposed to do about it?" (Yes, ng, I will ask what this meant, and report). But it will all hopefully pass and I will soon be bowling along the boulevards with the best of 'em. Very best wishes to all MikeHi <snip> >I haven't used one yet because of the possible infection -but not >needed to either. Coincidentally, I've just noticed Clarence's comment [quoted text clipped - 3 lines] >catheter was when my stream has been very intermittent and seemed >likely to come to a standstill and i was advised i should catheter. <snip> Mike I've only recently been approved for a TURP around August, 2006. That will be a 13 month span of Nocturia and predominately weak flow and small volumes with 100-150ml average daytime retention. I've been on 1 x Flomax 400ug per night all this time. Additionally, I have not had to resort to self-catheterisation, as yet, and the Urologist recommends against it, due to the size of my Prostate (72cc) and the length of the urethra. The main reason for the long delay to do the TURP was to allow all the Scar Tissue to heal and give the Urologist a good tissue base to work with. Even so, my TURP will require more attention than someone with BPH just having one for the first time, as the urethra in his case, would be a straight tube. Mine, however has healed up like a winding road, with a few pinched- in bottlenecks, even though the new tissue is healthy. I'm hoping for a skilful Surgeon. My anticipated stay in Hospital will be x 2 times that for a "normal" TURP. I'm not aware of the size of your Prostate pre and post HIFU, but this may cause you to travel a similar road to mine. (hopefully NOT!) All the best in your recovery. -- Reader to complete... -- Please reply to this ng as my email adress is fake: -- Regards -- CC Clarence That's a very interesting observation, which hasn't cropped up in previous converations with docs, and so I will ask about it. An interesting fact is that when I had a TURP couple of years ago I had a hell of a job ('hell' most appropriate!) getting the cather out -or at least the poor nurses did. Three different ones had to have a try heaving away at it. They finally found it had been kinked. I was told this had never been heard of before. So maybe my curent discomfort inserting a catheter, bearable though it is, has got some similar cause? I've certainly got a smaller prostate now than I had pre the op. and some seminal vessicle has got sound blasted away too. Though believe it or not, neither I nor my GP has received any details of the surgery done - that's how the NHS works. It gets done, but getting info about what's done is a bit more problematic than solving the Da Vinci code. It does help to find a caring specialist ready to answer emails. Incidentally to update my post-HIFU reporting of a couple of days ago - I do not have a bladder infection. My frequency is rather due to the fact that it is common post HIFU for about two months. I am contented at this news. I'm happy to put up with post op. side effects. The anxiety groove is when we don't know if it's a temporary side-effect or something more permanent. Happy me for the moment. Also, tried the new catheter with the little curve at the end. It was a little more uncomfortable than the ordinary type -to which I will revert if needed. As for you Clarence you really do go through the mill and I wish you every success for some sound progress. >Mike I've only recently been approved for a TURP around August, 2006./Snip ......./continue.... Even so, my TURP will require more attention than someone with >BPH just having one for the first time, as the urethra in his case, >would be a straight tube. Mine, however has healed up like a winding [quoted text clipped - 6 lines] > >All the best in your recovery. > cause? I've certainly got a smaller prostate now than I had pre the > op. and some seminal vessicle has got sound blasted away too. Though [quoted text clipped - 3 lines] > Vinci code. It does help to find a caring specialist ready to answer > emails. How do you know your prostate is smaller, if you can't get any info? I'm surprised they didn't try and get all the seminal vesicles. SVs seem to be the worst for prognosis, as I understand it. Which may not be as it is. > Incidentally to update my post-HIFU reporting of a couple of days ago > - I do not have a bladder infection. My frequency is rather due to the > fact that it is common post HIFU for about two months. I am contented Understandable, with all the crud you are clearing. > at this news. I'm happy to put up with post op. side effects. The Contentment is nice. > anxiety groove is when we don't know if it's a temporary side-effect > or something more permanent. Happy me for the moment. Also, tried the > new catheter with the little curve at the end. It was a little more > uncomfortable than the ordinary type -to which I will revert if > needed. > As for you Clarence you really do go through the mill and I wish you > every success for some sound progress. I second this wish, Clarence, and best wishes to you, too, Mike. laurel /early snip Hi Laurel, Thanks for comments, and I appreciate your good wishes. If I've read his tables aright, Partin states that of 100 guys with my scores of Pca, 93 will have microscopically metastased. But that means there's seven who haven't! That includes me. As my grandkids wrote on the card they greeted me with on picking me up from hospital, "You WILL get well, Pappy - The Power of Positive Thinking". So all good wishes helps Laurel! Thanks - though Clarence is a bit more in need, I think. You wrote: >"How do you know your prostate is smaller, if you can't get any info? >I'm surprised they didn't try and get all the seminal vesicles. SVs >seem to be the worst for prognosis, as I understand it. Which may not >be as it is." Some very good questions. I saw the surgeon for five fairly woozy minutes the morning after the op. on April 10. That's my one and only contact. I saw my doc. couple of days ago (a month after) and he had received a hospital discharge form on which was written the following information about my op: it reads, "HIFU". That's it! Like everybody else - even on this very knowledgeable ng - he hasn't got a clue what goes on in this new HIFU. So there's no way he can advise me on after-effects. I think, on my behalf, he was highly peed off. However. I assume my prostate MUST be smaller if they actually blasted the cancerous bit of it into smithereens. No? But your question about the seminal vesicles I can't answer. Perhaps they did do all of it? Perhaps some of it? I heard it mentioned in the five minutes summary but cannot remember clearly exactly what was said. Hopefully my doc is now getting some answers. I'll let you know Laurel, as part of my reporting. MikeHi Mike, Microscopic mets can be gobbled up by your immune system. Make it strong! Always nice to have a Dr PO'd on your behalf, too bad it can't translate to any answers. Can't you just sign a release to the hospital for your surgical reports and such. Surely they write reports. All we have to do over here is deliver a signed note to them and they have to deliver copies of all our records to us. Don't know what kind of info they would have though. Its ultrasound guided, right? So, at least over here, there would be at least 2 reports. The surgeon's, the ultrasound tech's. I hope I'm not coming off as negative or pushy, I am excited about your new frontier and curious. laurel > /early snip > [quoted text clipped - 32 lines] > > MikeHi Laurel, fromyour message below: >Can't you just sign a release to the >>hospital for your surgical reports and such. Surely they write >>reports. All we have to do over here is deliver a signed note to them >>and they have to deliver copies of all our records to us I'll cut some very long stories very short (sighs of relief from all around the ng) - well, fairly shortish. From my earliest Pca days as an NHS patient I've found if I want to know details about my condition I have had to insist on a written report. I've had two in nearly a year. I now have been provided with an email address of an onc nurse if I want any information. She answers immediately, but I don't get the information I've asked for. I addressed the last email for consideration and answer by the specialists. The reply came back immediately -fine -but from the nurse, who is very skilled but she's not my HIFU specialist. And it was not an answer. This system has put me in the unloved position, I suspect, of being a bit of a bloody nuisance - always asking questions - for the simple reason I always can't get answers. As my last post indicated, nor is my GP told exactly what has happened -even though I'm advised to go and see him for problems I've mentioned. The doctors and nurses are fine. But from this patient's point of view the system is a thorough bureaucratic mess - and I know that's also the view of just about all the docs and nurses I've ever spoken to. They don't make medical decisions. Non- medical managers and politicians do and provide endless forms to fill in to exercise control. The most wonderfuly effecient and patient senior nurse I've ever met was at my sojourn at UCHL. She is seriously considering taking early retirement - not good news for all the other nurses who approached her all day long for information while she was doing her own job. The reason: "Too much politics." Your comments included: >>what kind of info they would have though. Its ultrasound guided, >>right? So, at least over here, there would be at least 2 reports.The >>surgeon's, the ultrasound tech's... Two!! Ho! Ho! Ho! - is it Xmas? Best wishes Laurel, and to all. >Mike, >Microscopic mets can be gobbled up by your immune system. Make it [quoted text clipped - 45 lines] >> >> MikeHi > an email address of an onc nurse if I want any information. She > answers immediately, but I don't get the information I've asked for. I Great. > addressed the last email for consideration and answer by the > specialists. The reply came back immediately -fine -but from the > nurse, who is very skilled but she's not my HIFU specialist. And it > was not an answer. This system has put me in the unloved position, I I hate this. If we had the resources.... I used to love writing those very professional "f-u" letters; business-like but demanding service. But they take so long to write. Gotta get your logic impeccable, your language perfect, your tone just right. And I do love speakerphones. "No, don't call me back. I'll just hold." Takes too much from someone who has enough on their plate. > suspect, of being a bit of a bloody nuisance - always asking questions > - for the simple reason I always can't get answers. As my last post There's a point. A clerk could copy a report and hand it over the counter to you. Of course, you might still have a question (gasp!) and actually need additional information. > indicated, nor is my GP told exactly what has happened -even though > I'm advised to go and see him for problems I've mentioned. [quoted text clipped - 3 lines] > the view of just about all the docs and nurses I've ever spoken to. > They don't make medical decisions. Non- medical managers and You'd think there'd be a groundswell of frustration and demands for change. > politicians do and provide endless forms to fill in to exercise > control. The most wonderfuly effecient and patient senior nurse I've > ever met was at my sojourn at UCHL. She is seriously considering > taking early retirement - not good news for all the other nurses who > approached her all day long for information while she was doing her > own job. The reason: "Too much politics." Clarence sent me a news article. 3 or 4 of the uros (including his) at his clinic have resigned because of the politics, no resources, substandard care. The article quoted someone (in to me what was a prissy voice) that yes, there are big problems, but we can't have our doctors quit over it. This problem was like that one from UK that someone posted about a man getting a biopsy over a year after it was recommended. > Two!! Ho! Ho! Ho! - is it Xmas? The more I see of medicine in Au & UK the more I appreciate the US. >You'd think there'd be a groundswell of frustration and demands for >change. Laurel/Juniper Please! Don't get me started, with this sort of highly relevant question! I try hard to stay out of ranting politics in this ng where people have enough on their minds. But......if you goad me unmercifully......!!*** On May 15, MikeHi replied to Juniper: (snip) > Please! Don't get me started, with this sort of highly relevant > question! I try hard to stay out of ranting politics in this ng where > people have enough on their minds. But......if you goad me > unmercifully......!!*** > Mike might find it helpful to look in on Prostate Action, a UK-based newsgroup, http://p4.forumforfree.com/index.php?mforum=prostateaction It was established just few months ago. Most members are Brits, but there is a couple of Enzeds, a Spaniard, and some Yanks. One of their projects is to try to "loosen up" the medical system in the UK. In last Saturday's chat (2000 hours GMT every Saturday) I learned that something I suspected is a fact: A NHS patient has virtually no choice of physician. He is assigned to whomever happens to be available when he at last appears for his appointment. He may not make his own appointment; he can see a specialist only by referral. He may not travel outside his local area to consult a physician. Regards, Steve J >>Mike might find it helpful to look in on Prostate Action, a UK-based >>newsgroup, http://p4.forumforfree.com/index.php?mforum=prostateaction Steve Much thanks. It looks a very good, comprehensive site. My wife - who's had a couple of mini-strokes is currently ill in bed, and I am a trifle knackered. But I will contribute to it tomorrow. >t was established just few months ago. Most members are Brits, but >>there is a couple of Enzeds, a Spaniard, and some Yanks. >> >>One of their projects is to try to "loosen up" the medical system in the >>UK. I agree with its aims - not half! And I am quite certain these aims are shared by UK doctors and nurses in large numbers -see my previous posts. >>In last Saturday's chat (2000 hours GMT every Saturday) I learned that >>something I suspected is a fact: A NHS patient has virtually no choice >>of physician. He is assigned to whomever happens to be available when he >>at last appears for his appointment. He may not make his own >>appointment; he can see a specialist only by referral. He may not travel >>outside his local area to consult a physician. Steve this is no longer entirely true - on the face of it. Your comment is correct that I may not make my own appointment; and I can see a specialist only by referral. But very recent changes mean I can now choose my specialist - (glory be to the Internet! - without which, how would I know?) And (I think! - I read it in the newspapers) I can now travel outside my area. My HIFU treatment was certainly done outside the area - but I was very forunate my area urologist is a young, knowledgable researcher, is into HIFU, and knows (and works with) the UCHL team: there aren't many uros around who would know enough to refer me. BUT.....I also have diverticular disease (colon -not serious, plenty of old geezers share it - but a nuisance). I clicked the mouse and chose a specialist. I finally got an appointment and attended his clinic. Oh, dear, sorry, he's retired. However I thought the doc I was ushered into seemed OK. In three more appointments with 'him' I saw a different specialist each time. One of them informed me that 70% meant seven out of ten. Not everybody knows that. But I have to be fair and say that at the end of long and frustating days, it is possible to get first class docs (if you've chosen them and happen to find them actually sitting awaiting you in the clinic) giving you first-class treatment. Although.......although.... when you go in the theatre you're never sure, nor, at that stage, can have the nerve to insist, that the specialist you're under is actually going to wield the kinfe/computer. I've got lots more anecdotes but everybody on the ng is already falling asleep. Bye. Best wishes Steve, and to all. >On May 15, MikeHi replied to Juniper: > [quoted text clipped - 23 lines] > >Steve J On May 15, MikeHi replied to me, in pertinent part: > Much thanks. It looks a very good, comprehensive site. My wife - who's > had a couple of mini-strokes is currently ill in bed, and I am a > trifle knackered. But I will contribute to it tomorrow. > I do hope she's making progress. As for "knackered" I have no idea what that is but suspect that it's not good. (snip) > Your comment is correct that I may not make my own appointment; and I > can see a specialist only by referral. > But very recent changes mean I can now choose my specialist - (glory > be to the Internet! - without which, how would I know?) And (I think! > - I read it in the newspapers) I can now travel outside my area. (snip) Great news! Slowly, slowly, the bureaucracy can be moved. Consider what the ladies have done re: breast cancer. I look forward to seeing Mike's pixels on the group. Regards, Steve J "He is the best physician who is the most ingenious inspirer of hope." -- Samuel Taylor Coleridge Unofficial translation (meaning no dictionary, lol).... *knackered* ---- whacked out, totally beat, falling asleep on the keyboard, etc. And *theatre* of course is the operating room, not the show/cinema. Cheers....Halfway in Between. (UK & US) > On May 15, MikeHi replied to me, in pertinent part: >> Much thanks. It looks a very good, comprehensive site. My wife - [quoted text clipped - 28 lines] > "He is the best physician who is the most ingenious inspirer of hope." > -- Samuel Taylor Coleridge > Much thanks. It looks a very good, comprehensive site. My wife - who's > had a couple of mini-strokes is currently ill in bed, Sorry to here that, Mike. My uncle has had numerous minor strokes, but the docs still keep him kicking. He's had to give up golf, but he still gets around and takes care of his wife who has Alzheimer's. I hope your wife bounces back similarly. For Steve and Heather >Sorry to here that, Mike. My uncle has had numerous minor strokes, but the >docs still keep him kicking. He's had to give up golf, but he still gets >around and takes care of his wife who has Alzheimer's. I hope your wife >bounces back similarly. Thanks Steve. I think we're gonna have a competition to see who can groan the loudest to see who looks after who! Hats off and good wishes to your uncle, strong guy, and now my wife knows that it's not only me who expects her to bounce back! Heather wrote, re meaning of "knackered": >Unofficial translation (meaning no dictionary, lol).... Hi Heather, sorry to learn you're skint, and can't afford a dictionary, I thought I'd help and I've got out my dusty old Chambers Dictionary. I read: 'Knackered (slang) exhausted, worn out'. What? No!no! I'm throwing the thing away. Useless, compared with your inspirations: >*knackered* ---- whacked out, totally beat, falling asleep on the >keyboard, etc. That's it! especially the keyboard bit... +*zx<=/,. ooops. What was I saying? Ah, I remember.You also translated for our US friends: >And *theatre* of course is the operating room, not the show/cinema. You sure? They said, 'your turn for the theatre' and wheeled me off. I shut my eyes when I went in and came-to four hours later somewhere else. I think 'The Godfather' was showing somewhere locally and for all I know I saw it but dozed off? > One of them informed me that 70% >meant seven out of ten. Not everybody knows that. It always helps to broaden the mind though doesn't it? My urologist, when discussing the volume of my prostate in relation to PSA density let slip the revelation that 'ccs' is shorthand for cubic centimetres. I've been reading your posts which, legion frustrations with the NHS aside, seem upbeat about yourself but not so good with your wife. I'm sorry to hear that and hope for the very best for both of you. r |
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