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hey Joe,
Thanks for your words of encouragement, and wise advice. The only part I might take issue with is the final statement. Part of my dilemma is that, for example surgery statistically seems to leave 50% of men with quite significant continence and potency problems. That's a bit like flipping a coin, so right now, a surgeon would have to put up a pretty convincing case for me to go down that route!
G’day David and welcome again to this Strange Place of ours where so many of our previously held beliefs and understandings can get stood on their heads.
I’m going to suspend my dealing with the updates for a bit (I’ve got up to last Thursday) to respond to your mail in some detail because it may help other newcomers.
First up some of the basics of prostate cancer:
Point #1: The Only Rule In Prostate Cancer Is That There Are No Rules Every case is individual and although similar cases can be, and are, lumped in together for the scientific studies, this does not make them predictive for the individual.
Point #2 “Diagnosis Is An Art, Not A Science.” All tests, scans etc are inaccurate to a greater or lesser degree and all are interpreted by people with a greater or lesser ability.
Point #3 “A Negative Result Does Not Mean That A Condition Does Not Exist: Merely That It Has Not Been Identified.”
Point #4 “There Is No Certainty In The Strange Place That Is Prostate Cancer.” See points #1, #2 and #3 above.
Against this background perhaps we can have a look at the various points you raise here and in your story at DAVID PRICE
1. PSA your history of PSA does not reveal any significant change. The difference between 3.7 ng/ml and 4.1 ng/ml is within the normal range of accuracy see PSA 101 and associated links. Therefore there is no evidence of your ‘normal’ PSA being associated with PCa.
2.Staging: If you had a negative DRE (Digital Rectal Examination) you would have been clinically staged as T1c (see definitions in STAGING. But the doctor felt a nodule, which would have raised your staging to a clinical staging of T2a (because he only felt something on one quadrant of the gland). The subsequent biopsy showed some positive material in both sides of the gland and this then gives a pathological staging of T2c. I have emphasized the difference between clinical and pathological staging because most of the nomograms I have seen are based on clinical staging. Now the question is – since the nodule identified on DRE was benign, should the clinical staging revert to T1c? As a perennial optimist, I’d say Yes, but there are certainly other, valid views. If you enter T1c into the Salon-Kettering Nomogram, the probability of extracapsular extension drops to 19%. On the other hand, the Partin Tables show a range of 26% - 33% for T1c and 26% - 33% for T2c. No doubt there are other tools that could be used, all of which would show differing results.
3. Scans: All the scans used today are notoriously unreliable for the kind of condition that is currently labeled ‘prostate cancer’ because they can only identify large tumours with any kind of consistency. Studies will demonstrate a wide variety of false negatives (identifying as tumours conditions that are not cancerous) and false negatives (failing to identify cancerous conditions. They are used, in my opinion, mainly because they can be used, not because they are likely to provide any useful information in a diagnosis like yours.
4. Gleason Score: It seems that you have just scraped in to a GS of 7. That alone would make it very important to get a second opinion from the best pathologist you can find to confirm the grades. Of all the tests, establishing the Gleason Score is the most subjective and although the normal response is “There would be no change.” but many a study shows that only about one third of Gleason Scores are identical on review, with about the same proportion being understated and overstated. It is also important to know that there has been what has been termed a Gleason Score “migration” over the past 10 years or so, with Gleason Scores creeping upwards. So a ‘marginal’ GS 7 might well be what would have been termed GS6 or less several years ago.
Let me give you a brief run-down of the details of my diagnosis, because I think that these demonstrate these issues pretty well:
A. PSA. My PSA was 7.2 ng/ml. I had no previous record of PSA and it was not possible for the doctor, who did my DRE before taking blood to know if this was a spike or part of a series of increases. Of course I didn’t know about these things. Had I known then what I know now, I would have insisted on treatment and/or PSA series being developed. I believe they would have shown that my PSA at that time was related to BPH – it reduced to below 4.0 ng/ml within a few weeks
B. Clinical Staging. The first urologist staged me T2b, although his report showed only that he had felt ‘something’ on one side of the gland, which would have made it T2a. I saw a number of doctors as I went along my path, all of whom did the DRE. I got smarter as I went along and asked each doctor to stage me before they read the reports from my doctor. They all agreed and all would have staged me as T1c.
C. Gleason Score: My initial GS was 3+3=6, I sought a second opinion which came in as 3+2=5, a third opinion was 2+3=5 and a fourth was 3+4=7. So what was my GS? Well, optimistically as ever I decided 5 was a better number than 7!!
D. Scans: The radiographer who did my first MRI scan staged me as T3 or T4 based on what I subsequently discovered was a very poor scan done with obsolete equipment. His views were rejected by the oncologist I was then attending. I also had a series of scans done in the US with state of the art equipment, spending about three hours in all in those darned machines. The scan included an endo-rectal coil scan. The surgeon urologist I saw in the US urged me to immediate surgery, saying that the scan showed a tumourous mass that ‘stood out like a street lamp on a dark night’. We asked him to show us this phenomenon and, if it wasn’t so serious, would have been reduced to laughter as he searched the slides for this beacon of light. He eventually found it and we asked him to mark it so that we, and oany future medical advisor, could look at it more closely. This he did. My oncologist subsequently spent some time looking at the scans under magnification and came to the conclusion that the spot identified was most likely scar tissue from my biopsy, saying he had never seen cancer growing in parallel lines previously.
So, was my diagnosis PSA 3.1, stage T1c, GS 5 – insignificant; or PSA 7.2 Stage T4, GS 7 – late stage and aggressive? You pays your money and takes your choice. As an old Urologist I met on my journey said “I never recommend that my patients get second opinions – it just confuses them.
As I say, these are my personal experiences and clearly may not apply universally. I certainly would never recommend that anyone follow my choice of (non)-treatment. we must all make decisions that suit us mentally and physically, but it is worth bearing in mind the view of Dr Stephen Strum “I am always perplexed when I see such little evidence of ANALYSIS prior to such a life-altering invasive procedure. We mandate by law that the content of carbohydrate, protein & fat be indicated on the foods we eat but we have no legislation of basic requirements to ASSESS the STATUS of a man before he has his prostate treated. His suggestions of how to develop a Strategy for dealing with the disease is linked from SURVIVING
Good luck – and keep asking questions until you get answers.
Re: Understandable Confusion in the Diagnosis Process
Terry:
Thank you so much for taking time out to address this issue in some detail - I'm very grateful. I'm seeking a second opinion in a couple of weeks at a different hospital (UCLH with Mark Emberton) Since they're involved in the higher accuracy MRI scanning (prostate mapping.com)he may suggest a further MRI - or he may be able to make a better analysis of the existing scan. I'm also going to discuss HIFU with him, as this gets beyond the interpretation of the results within the surgery/radiotherapy dialectic.
I asked the oncologist I saw for a second opinion on the biopsy. I cited the migration upwards of Gleasons over the years. He didn't agree that this was happening. He also said that the pathologist they use is one of the world's leading experts, but they could ask one of the others to look. However, since the WLE also trained all the others, we're likely to come up with the same answer. Perhaps I should be content with the 3+4 - not least because of the natural tendency to want to see a lower result. It is probably better to be safe than sorry.
Your story and the gap between possible interpretations (and therefore decisions) is astonishing, though probably not uncommon. I suppose I have to remember that they're doing the job as best they can.
I think I know what's going to happen next though: without giving me warning, they took a PSA. I'm sure the inevitable rise will exercise them and I'll be urged to make a decision - if they'd asked I would have told them that I'd been on my bike 3 days in a row, and me and my wife had finally found some 'us' time two nights before the surprise test!!
Re: Understandable Confusion in the Diagnosis Process
David,
Good to see that: you figured out early that surgery is a coin toss wrt side effects, and that you will be seeing Mark Emberton who will likely expand your range of treatment options.
I think that we all go into this wanting to come out cured, potent and continent. You may decide that you want to trade some amount of cure for a better chance of coming away with less (if any) side effects. What (if any) treatment you receive is up to you - you are the one who is going to live with the outcomes.
