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Medical Forum / Diseases and Disorders / Prostate Cancer / August 2006MikeHi's First PSA post HIFU - Vet sleuths ahoy!
(From MikeHi -sorry if signature is something else. I never beat the gremlins!) Had the HIFU op. April 10th last at UCH London. PSA June 30 : 0.681 (when I was in a local hospital for a TIA (ministroke)) July 25: 0.812 (Taken at same local hospital) Aug 2 0.95 - (this the UCHL one -but see next para.) NOTE please. Don't read psav or too much into these figures Readings taken at different hospitals. AND I had a bladder infection for the July and August readings. To sort this out I will be getting another reading at UCHL in three months' time. Remember - I'm non-typical HIFU case: very first high risk (G 9) to be treated, PSA was 14, Stage 2b & just passing into middle age at 78. In the pre-op letter from the hospital: 'He has been made aware that he is extremely high risk of having extra prostatic disease and there is a 50% chance of long-term progression'. That sounded like pretty good odds to me after reading where some of you guys are at. Say we look at 0.681 (no infection) as somewhere in the likely ball park. 84% of HIFU (Sonablate) patients have had PSA nadir levels dropping to 0.2ng/ml or less after treatment. My TIA was no big deal. But my thinking cap has shrunk and my powers of concentration. (Doing this post in foggy spurts!) Which is where I need the help of the most supportive and sleuthful support group on the Web. My specialist team are tops. But I received the PSA after I'd seen them, and as an NHS patient I don't get direct comms with them except every few months. I would meantime be very glad of some reading of the runes, if any, for my new figure. Let's take my PSA at 0.681. In July JHHtexas's posted: "A PSA reading above 0.2 is an indicator that Pca still remains in the body." I would have expected that. But how much bigger is 0.681 than 0.2 please? Post-op Side Effects continuing: Mainly Urge incontinence (see previous post). And weak and uncertain stream. Still self-catheter occasionally. Boss specialist reckons I've still got debris and sometimes it takes longer to clear than a few months. But he's a good guy and has suggested a systoscopy shortly -don't know when until I receive the appointment. Nocturia -sometimes drops to three times -four otherwise -rather than the six or seven as was. Very Fatigued: Over! (but a long way from 'and Out!) MikeHi (Mustn't forget - for all who had nice words for her -and the rest of the group- my missus asks me to pass on her very best wishes to all.) Also: found easy psav calculator: http://www.pcngcincinnati.org/psa/calculator.html Mike, Have your doctors commented on the PSA reading? Have they told you what they think it means? I don't know enough about HIFU to know what the outcome ought to be. Radiation damages the DNA in cancer cells without killling them all outright. However it is hoped that the cells will die over time as their damaged DNA fails to provide them with required gene products. So with radiation, small amounts of PSA often continue after treatment. However if the purpose of HIFU is to kill all the prostate cells outright, then I would think the readings you are getting indicate that there are still live prostate cells somewhere in your body, and that some are cancerous. The HIFU specialists should be able to tell you what your readings mean. If it is determined that you still have cancer, which is very possible given your high risk disease, then I think you should try to get a consultation with a medical oncologist, someone who specializes in medical treatment of prostate cancer. A specialist may be able to give you more information and a better treatment regimen than from a urologist whose real specialty is surgery or HIFU. Alan Hi Alan Thanks for your reply. >The HIFU specialists should be able to tell you what >your readings mean./Big Snip I think the problem is rather in my foggy prose. Sorry. But somewhere buried in my post you will find: <But I received the PSA after I'd <seen them, and as an NHS patient I don't get direct comms with them <except every few months. I would meantime be very glad of some <reading of the runes, if any, for my new figure.< You added >. A specialist may be >able to give you more information and a better treatment >regimen than from a urologist whose real specialty >is surgery or HIFU. Mark Emberton who I last saw, and in charge of the team is more than qualified. Look up: http://www.lua.co.uk/about_us/partners/mark_emberton The problem is the NHS system. It is free and has been allowed to be overwhelmed with patients from literally all over the world - and if your are an NHS patient they can't make an exception of one person and see him inside the limits the system demands. You also wrote that you didn't know much about HIFU. Nor does anybody - that's why I promised to post. Again, the fault is my foggy foggy prose. The simple question I would be glad to have answered is: how much more (in its significance) is a PSA of 0.681 than 0.2? Doesn't matter by what treatment one arrived there. best wishes MikeHi ... > You also wrote that you didn't know much about HIFU. Nor does anybody > - that's why I promised to post. Again, the fault is my foggy foggy > prose. I'm in a fog myself most of the time. I think if I had read your posting more closely I would have understood it better. However my unfamiliarity with the NHS and the lingo (I'm on the other side of the pond) probably contributed. > The simple question I would be glad to have answered is: how much more > (in its significance) is a PSA of 0.681 than 0.2? Doesn't matter by > what treatment one arrived there. I'm not a doctor and no kind of expert about this, so what follows is not necessarily accurate. For a radiation patient, the difference between .681 and .2 may or may not be significant. Radiation patients can experience a PSA "bounce" that does not indicate a recurrence of disease. In my own case, after HDR brachytherapy, my PSA went from .8 to .6, .9, 1.8, .5, .2, .25, etc., bouncing up and down. It appears that even the high point of 1.8 did not signify recurrence. For surgery patients however, the difference is very significant. A rise from .2 to .681 indicates continuing growth of cancer. For HIFU patients, I don't know. If I were you I would probably try to do the following: 1. Assume I had a recurrence and begin researching hormone therapy and possibly chemotherapy as options for treating it. 2. Not get too upset. Even if your cancer is very aggressive, there's a good chance you can hold it at bay for a few more years and make good use of that time. Best of luck to you, and to us all. Alan Hi Mike, Try: http://www.edap-hifu.com/eng/patients/prostate_cancer/2a_hifu_overview.htm or if that is too long just go to: http://www.edap-hifu.com then click on prostate cancer. From what little I know about it I'm not sure you have a problem. I've read several things and it seems that they are quite happy with a low stable PSA not necessarily a undetectable PSA. Unfortunately I cannot find out what they mean when they say "low" but I would think 0.6 is low as compared to 2.0 but I completely understand why you want to see 0.2 and not 0.6+ It's not radiation; it's a ultrasound and it seems like it is a slow cooker method of destroying the prostate. Apparently it is faster than brachytherapy but the end result is pretty much the same, the destruction of the prostate and with it any cancer. PSA results are exponential so a 4.0 would be twice what a 3.0 is, and a 0.6 would be twice what a 0.5 is but you've got to remember that when dealing with tiny fractions the difference is so tiny. So in reality the difference between a 0.2 and a 0.6 is super small. Maybe one of our math guys can explain it better. I guess my point is - it seems to me (a non-medical person) that it is probably too soon to tell much of anything. There is information about redoing the HIFU in 6 months if the doctor thinks it is warranted. Seems there is more info on redoing the HIFU when it comes to breast cancer and some other cancers. There is also discussion of RT to the prostate bed which make me wonder if they don't bother to redo the HIFU when it comes to PC and just go with more traditional things like RT. Also from what I gather things like infections can affect your PSA. So just hold tight and hope you feel much better when they take the PSA again. Just remember nadir is not the same for everyone. Please keep us posted. Wishing you and your wife the very best. Bev > (From MikeHi -sorry if signature is something else. I never beat the > gremlins!) [quoted text clipped - 60 lines] > Also: found easy psav calculator: > http://www.pcngcincinnati.org/psa/calculator.html >(From MikeHi -sorry if signature is something else. I never beat the >gremlins!) Hi Mike, delighted your ebullience is unshrunk and still reading your posts when I'm here with great interest and hope for you. Being a novice at all this I won't be able to cast light on your figures but I'd be comforted by the fact that whatever your PSA might be reflecting at the moment, a second follow up treatment is apparently in order if deemed useful - at least that's what I read about HIFU last year when the uro slipped me some leaflets. Also your .6-ish PSA result probably needs to wait for some context and further settling down before the figures will become meaningful to anyone. I'm here in fits and starts these days trying always to resist the addictive pull so might have missed a post or two from you - in any case we can be passing ships in the night....a very loud (but low frequency!!) honk on my horn to you and your wife. You 'bout said it all, Mike. I don't know if HIFU is something you can do a second time. Surgery at 78 and after a tia is probably not indicated. I'm not sure about radiation at "middle" age. But, that G9 is the bigger culprit, most likely. I think you ought to very seriously consider going back on HT. As I recall, you had Casodex before HIFU. What were your SEs like?  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 > (From MikeHi -sorry if signature is something else. I never beat the > gremlins!) [quoted text clipped - 60 lines] > Also: found easy psav calculator: > http://www.pcngcincinnati.org/psa/calculator.html Hi and very many thanks to Alan, Beverley Rosbif and Steve First a couple of answers -Steve they can certainly do HIFU again. And my SEs were in my original post. And -like a previous poster -sorry, can't remember who, I was glad to get off Casodex and I'm not sure I'd do it again because of SEs. Wasn't a good post on my part though. I seem to have come over very nail biting. Well, that does happen sometimes. But I'm delighted at PSA O.6 or 0.9 or whatever in that ball park c.f. my 14 starting line. And it's clear enough that whatever the figure, I'm highly likely to have extra-prostatic disease. Nothing will change that. No, what I am is very, very curious. I've been waiting four months for this figure since the op. Now -for reasons I understand- I need to wait a further three months for a more valid figure. But if there's nothing at all to be interpreted from readings now, will there be anything in three months time? I sometimes feel like a dog chasing my own tail - when will I bite on to something a bit more solid? One of my sons has scolded me for always expecting answers. Of course, he's right. It's in the nature of Pca. Yet if nature abhors a vacuum, it's never more true than when the vacuum is understanding what's happening to you. I return the very best of best best wishes to you, and to everybody going through the same bothersome mental processes which Pca induces. MikeHi > Wasn't a good post on my part though. I seem to have come over very > nail biting. 'Tis the nail biting posts that most of us stick around to address. I think you've earned a bitten nail or two. > Well, that does happen sometimes. But I'm delighted at PSA O.6 or 0.9 > or whatever in that ball park c.f. my 14 starting line. And it's clear > enough that whatever the figure, I'm highly likely to have > extra-prostatic disease. Nothing will change that. I would say that is quite likely. But, I don't know how effective HIFU generally is regarding the desctruction of the disease at the prostate on the first go-round. You and Steve (osievers@optusnet.com.au) are our only guides into post-HIFU results and we haven't heard from Steve since February. > No, what I am is very, very curious. I've been waiting four months for > this figure since the op. Now -for reasons I understand- I need to > wait a further three months for a more valid figure. There has been consensus here that it takes three readings to determine that PCa is indeed growing. Yours have been about .7, .8 and .95. That pretty much indicates that cancer is growing somewhere. Until you get mestatic cancer, there is little likelihood that you or your doc are going to know where. But, it seems to me that if you were at 14 and you end up at 0.7, then there is a good possibility that the first HIFU treatment didn't get it all at the original site. Of course, with a G9, you can't ignore the possibility that it got it all and the rest is systemic. However, reapplication of HIFU seems to be one way of finding out. > I sometimes feel like a dog chasing my > own tail - when will I bite on to something a bit more solid? One of > my sons has scolded me for always expecting answers. Of course, he's > right. PCa diagnosis and prognosis IS a guessing game. The only time you have anything solid, it's too late. After .7 and .8, I think your son might have been right. But, I think you are due, at the very least, some commentary now that you've registered a 3-PSA pattern. 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 - much thanks -you last wrote /(lots of snips): >But, I don't know how effective HIFU generally is regarding the desctruction of the disease at the prostate on the first go-round.< HIFU can do a good job. I made sure of that before I agreed to it. However there are different kinds of HIFU. There's the Ablatherm system (Beverley gave the manufacturer's URLs) , the Sonablate 500 on low power and the Sonablate visually directed HIFU. I was told the real time visually directed kind was highly effective. That's what they use at UCHL. (And for which I have already given as the two best guides, specialists using the system: http://www.drmarc.co.uk/ and http://www.prostate-cancer.org/education/novelthr/Chinn_TransrectalHIFU.html The published Sonablate tests (including a lot of work from Mark Emberton's UCHL team - none 'high risk') were that: nadir PSA was 0.07 ng/ml or less in over half the patients treated :one in four men had an unrecordable PSA after, because the PSA was so low: 80% had a PSA less than 0.2 ng/ml. (See the report on the URL I posted June 14). <Of course, with a G9, you can't ignore the possibility that it got it all and the rest is systemic.< You've pinpointed the crux Steve. So anyway there'll be nothing new here. >But, I think you are due, at the very least, some commentary now that you've registered a 3-PSA pattern.< Yep, I would have liked some commentary. But I've explained the way the NHS works. And that's why I've posted here -and been much helped I also accept the argument that with the readings coming from two hospitals, and with two of the figures likely affected by infection -a reading in three months' time would be more relevant. Yet three months it always seems to be .. Half a League, Half a League, Half a League Onwards . . Yet through all the thunder I've still got a much better chance than the Six Hundred! Let's all keep riding on gentlemen!! MikeHi |
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