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Richard L.
- 61, Male
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OncologyStat has a lot to offer - a keyword search produced over 5,000 articles on prostate cancer, many full-text PDF.
Lab Tests Online is a seriously useful site, published by the American Association of Clinical Chemistry.
One can select by dozens of lab tests, conditions and diseases, or screening criteria, for a concise summary aimed at both health profession...
I think this has been mentioned elsewhere on the site, but just in case, there's 21-day trial online access to the New England Journal of Medicine here. Hundreds of papers in our field of interest.
Mike, Paul, many thanks for the definitions - that makes a lot of sense. I hope we can use the terms correctly in future.
Regarding expectant management I'd written to a researcher who used the term in a published article to ask what he implied b...
Could one of us, once and for all, who has some medical background, clear up and define what we mean by 'watchful waiting', 'active surveillance', 'expectant management' etc.?
They're different, and the interchangeable use is more than confusing ...
66% for men in their 7th decade. See Sakr et al, 1994
Paul, it's not immediately obvious why your urologist has recommended RP based on the data you have given. I would have thought that Active Surveillance would be a reasonable option to consider. Further reading which may help you make an informed ...
One interesting point about this particular study is that these 1,000+ patients met the UK NICE criteria for active surveillance, but were given an LRP. Did they have any input to the treatment decision?
Does single surgeon series imply that this...
Profile Information
- Have you been diagnosed with prostate cancer?
- yes
- What brings you to the New Prostate Cancer InfoLink social network?
- To discuss various treatments for Pc, especially Focal Therapy
- Would you help us grow the network? Would you tell others about it?
- Yes, certainly, when I have more experience about the network.
- About Me:
- Successful greenlight laser for BPH 2 years ago. PSA reduced but still high, leading to PCA3. TRUS, MRI, biopsies (2 cores out of 40 less than 5%). Gleason 6, T1c, PSA steady at 9.3 for 12 months (large prostate - 75ml), Free PSA % increasing from 12.5 to 13.9. Currently (Nov'08) under Active Surveillance, Royal Marsden Hospital, Sutton, UK.
My main interest is focal therapy (particularly HIFU), but in the meantime active surveillance and researching PSA assay protocols, accuracy and interpretation of PSA density, Free PSA, velocity etc. Have attended two Focal Therapy conferences (US @ Duke and UK @ Pelican Cancer Foundation) this year and close contact with current Focal Therapy research in the UK. Particular interest in gallidium enhanced MRI techniques, template-guided saturation biopsies and crucial differences in screening programmes, professional practice, attitudes and priorities between N. America and Europe.
I am not a medical professional and consider myself a classic example of over-diagnosis; I have a considerable aversion to the pressure placed on patients to accept unnecessary radical treatment.
In my experience physicians at general practice level have a poor knowledge of Pc - this has to be addressed by all of us.
A recent interest is unearthing significant but neglected research into Pc. For example - how many professionals will explain to patients that over 40% of men in their 40's, 50% in their 50's, 60% in their 60's etc. have 'at least' low-grade Pc? [Sakr et al: In Vivo 1994 May-Jun;8(3) 439-43] Weblink - http://tinyurl.com/64rbpq
Comment Wall (11 comments)
- At 11:38am on April 3, 2009,
George A. Brown said… - Hi Richard,
When I accepted your friend's request you had a note with your email address, and upon clicking "I accept" the note dissappeared and I cannot find out how to retreive it. Would you send the note again via the off line method or to my email, GBrownCapt@aol.com Your Friend George
- At 10:27am on March 6, 2009,
Richard L. said…
- Allan, apologies for the delay in replying. I'm having a PSA every 3 months, and MRI or biopsy every 18 months, depending on PSA free and total results. Everyone's case is different, but I would have thought that a PSA every 6 months was a bit on the low side to gauge a trend or velocity increase. It's an inaccurate test at best, and can vary with numerous factors on a daily, weekly or monthly basis.
- At 9:38pm on March 4, 2009,
Allan Berele said… - So what is the protocol of active surveillance that you are following? My urologist said PSA's every six months and biopsies every year. That sounded too painful to me. He also said something about the unreliablity of following the PSA alone.
- At 3:22pm on November 15, 2008,
Richard L. said…
- I haven't got up to speed on the mechanics of this forum - can one edit comments that have been posted? Can one send private mail to other members? Is there any reason why comments don't appear in the site's summary?
Steve, just one or two further thoughts. The researcher on the UCL trials is Mark Emberton (not Pemberton), and the link you gave was to the hemiablation trial. A summary of current trials can be found here. My interest was the focal therapy in which the tumour alone is ablated, and not the half or full gland.
My current plan is to be on AS until (or if) I need treatment. I realise this is not an acceptable strategy for all of us with similar diagnostical data.
- At 1:38pm on November 15, 2008,
Richard L. said…
- Apologies, Steve, I managed to delete my original reply to you. This may be different.
Yes, I've been following Mark P's focal HIFU trial at UCL closely, plus the hemiablation procedures he's running in tandem. Interim results (not yet published) are seriously impressive, and these led me to the Duke and Pelican conferences earlier this year, to hear him present to his peers.
I'd attended a couple of the live focal cryo procedures at Duke, and was a bit discouraged by the published morbidities v. HIFU. I'm really pleased yours worked out.
Talking to (N. American) surgeons at Duke, off-the-record I guess, I was fascinated (as a Brit) to hear about their concerns about HIFU and focal therapy in particular. A relatively straightforward procedure, perhaps at some stage in the future delivered by surgeons(?) without their experience of RP, could have have inroads into their professional practices. Not an opinion I share, but interesting nevertheless.
Also the difficulties with getting HIFU approved in the States, with current trials run against cryo, slowing the process.
The financial pressures in N. America with insurance considerations and professional protective practices were an eye-opener to a 'medical tourist', especially when they're being discussed openly (or, at least, within the confines of a conference).
- At 11:12am on November 15, 2008,
Steve Z said… - Richard,
You've really done your homework, so I'd assume you know, but since I didn't see you mention it specifically, are you aware of the focal HIFU clinical trial that's going on in the UK? Info is at http://www.cancerhelp.org.uk/trials/trials/trial.asp?freetextsearch=HIFU&searchtype=freetext&trial=14650&trialno=7900&spage=1&objective=0&cancer=0&stage=0&phase=0&treatment=0&location=0
POC is Mark Pemberton, e-mail markemberton1@btinternet.com.
I was interested in the trial, but thought the logistics would be too hard. I opted for focal cryo that I had done last month. Side effects have been minimal.
- At 5:40pm on November 10, 2008,
Richard L. said…
- Mike, I don't think my reply to you got in the system. If you have a citation for the Kuriowa study I would appreciate the details.
Many thanks.
- At 7:39am on November 7, 2008,
Richard L. said…
- Mike, thanks for this. You wouldn't have the original citation to the Kuriowa study? I would be keen to see it before commenting.
I take your point on focal therapy regarding prostate cancer, although of course, it's mainstream now with breast cancer. It could be a long wait with HIFU not yet an approved procedure in N. America.
My experience is that GPs in the States have a better knowledge of prostate problems compared with the UK. This could be because routine PSA screening is common in the US and not the norm in the UK. Discussing the necessity and validity of screening could make a very interesting discussion group here, starting with the simple question: Why? But I'll wait until I've been around a bit longer here before lighting any fuses.
- At 10:51pm on November 6, 2008,
E. Michael D. ("Mike") Scott said… - Richard: Maybe I am not being clear. What I am saying is that regardless of whether men are diagnosed or not (alive or dead), there is a strong probability that they are being under-graded (whether they are under-staged or not). That would apply to the Sakr study too, because the proposed revisons to the Gleason grading system were only issued in 2005. According to the Kuriowa study published the other day, your own Gleason 6 has an 11% probability of actually being Gleason 3 + 4 = 7a, for example. With respect to the status of focal therapy, I think we may be splitting hairs. It is certainly no longer experimental, but at a Duke conference on prostate cancer this September one of the Duke focal therapy researchers quite clearly stated that he considered focal therapy to be investigational at this time. It would frankly be unethical to consider focal therapy to be anything except investigational until we have at least 5 years of follow-up in a well-defined patient population.
There is absolutely no doubt that general practitioners have a poor understanding of the appropriate management of prostate cancer. The recent USPFHS guidelines are a monument to such under-education. Basically, if you do not know that you are at risk, how can you make appropriate decisions about what to do? The average GP is still living in a world where a PSA of 4 ng/ml is considered to be "normal," which the PCPT trial completely debunked.
- At 5:23pm on November 6, 2008,
Richard L. said…
- Mike, many thanks for your welcome - I certainly hope to learn from the expertise on this forum.
I've found the In Vivo article useful as I'm not aware of similar subsequent research; none of those patients had undergone prostate surgery. The study you mention was based on men who had undergone radical treatment and by definition diagnosed with Pc.
There's a recent study, Graif, Catalona et al 2007 which deals with both under and over diagnosis, which has found under diagnosis is more prevalent.
Looking at Focal Therapy from a European and Far Eastern perspective I would suggest it has progressed beyond an 'investigational' stage. My information is from the Duke Conference in February this year, the Pelican Centre's research in the UK and published research from one of the HIFU manufacturers (I have no affiliation).
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