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Out of interest I undertook an analysis of YANA stories in order to ascertain who had chosen what, if any, treatment at all. I found over 800 stories spanning several decades. But in doing so I discovered some interesting stats that I would like to share.
So to the data, I chose only active stories, being non-invasive, and active surveillance. A total of 82 stories were available to extrapolate data from. So let’s get to it.
Of the 82 stories, 60 were from the USA, 9 from the UK, 6 from Canada, 4 from Australia, and 1 each from South Africa, Israel and Thailand. The stories were over 10 years plus for 9 people, 5 to 10 years for 26 people, and less than five years for 44 people. Age groupings for the stories were 9 for those in 40’s, 29 in 50’s, 48 in 60’s and just 5 in 70’s.
PSA at diagnosis was less than 2.5 for 12 people, 2.5 to 5 for 33 people, 5 to 10 for 23 people, and 10 and over for 10 people.
Gleason scores at diagnosis were 6 for 78 people, and 7 for 4 people. No other scores stated.
Staging: 1 person with T1a, 2 with T1b, 68 with T1C, 5 with T2a, 4 with T2b, and only one with T2C. No other gleason scores stated.
So what do these stats tell us? Well our typical person on AS around here is a resident of the USA, likely to be in there 50’s or 60’s, have a PSA in the range of 2.5 to under 10, gleason score of 6, and a tumour staging of T1c. All pretty much the accepted norm for AS in clinical practice (localised, low risk PCa) for the last decade.
So how has our typical AS warrior done? Pretty well actually, for only 15 required later active treatment, and perhaps more importantly only 3 passed away (but even they, were atypical). So for low risk PCa, our typical AS warrior, is on a winner.
We do need to bare in mind however that only about 10% of persons posting their stories on YANA chose to take the AS route for their journey, and the other issue we need to acknowledge is that for the most part, they were ideal candidates. But we also need to remind ourselves that 90% of persons posting their stories on YANA did undertake some form of active treatment and for the most part, they have also done well.
Given that YANA does have contact details for most persons who have posted stories, it would be very interesting to be able to validate how many persons who undertook active treatment experienced harm as a result. Such a study would be very valuable in assisting men to make informed choices about treatment or otherwise.
p.s. It was a rainy day and I had nothing better to do!
Wow! What a thoughtful and timely presentation. Well done John. Quite a productive way to spend a rainy day.
Your effort also illustrates an under utilized aspect of YANA as a research venue.
Out of curiosity whose thesis does it most support yours or Alan's?
And please believe me I am not looking for the two of you to "re-engage."
Thanks for the kind thoughts Don. Yes, I agree that the substantial amount of data contained in poster's stories on YANA, does provide a good opportunity to answer some significant questions.
No doubt a well structured research project extrapolated from the data on here would be a fitting tribute to Terry's memory. I am sure a great many men would find such information as being invaluable. Perhaps Mark Freedkin can indicate if he is amenable to such an undertaking.
Don I think those stats simply support the need for further research. For me, they pose more questions than answers. But it was a bit of fun to have a play with the figures. And to who's thesis re AS is the correct one? Well some questions are easy to answer, others less so. I will let you make of that, what you will.
I still believe there is a significant over treatment problem especially in older men with less than 10 years to live.
Yet, a new study from the University of Texas MD Anderson Cancer Center in Houston reveals that the vast majority of men diagnosed with low-risk prostate cancer are receiving treatment. Further, 80% of the men with low-risk prostate cancer who were diagnosed by a urologist received treatment while only 20% were managed with active surveillance.
In the cohort of 12,068 men age 66 years and older (median age, 72 years) who were diagnosed with low-risk cancer, 70% of those 76 to 80 years old and more than half of those older than 80 years still received up-front treatment despite life expectancies of 10 years or less (JAMA Intern Med July 14, 2014 [Epub ahead of print]).
Keep in mind that more than half of men that start AS drop out and seek definitive treatment even though they show NO signs of progression.
There is a wealth of data available in the YANA Survivor Stories that could be analyzed:
1383 Stories (total)
778 Active Stories (updated within the last 15 months)
541 Inactive Stories
64 Deceased Members
For all of those stories, we have information like month/year of diagnosis, age at diagnosis, PSA at diagnosis, current PSA, Gleason at diagnosis, staging, original treatment method selected, current treatment method (if any), side effects, location, and status (Active/Inactive/Deceased). I would be happy to extract the information from the YANA database into an Excel Spreadsheet format (without any member names), but I am unable to perform any extensive analysis of the data due to other priorities (like my full-time job and training for my private pilot's license). Please contact me privately if you would like to discuss this in more detail.
Irvine, California (USA)
Ok Mark good to hear you are happy to release that data. I will give it some serious thought over the next couple of days with a view to designing a research methodology appropriate to the data at hand. I will contact you by email most likely next week to discuss this matter. My research skills are a little rusty but I do have plenty of time to undertake such a project. As well as a retrospective data analysis from your database, I would also like to distribute a small questionnaire for the purpose of identifying additional pre and post treatment issues. This selection of choice of Rx, and post treatment side effects, are of particular interest. Please let me know if you would be agreeable to such a bulk email? Thanks again Mark.
To the guys on the forum, what questions would you have that we may possibly be able to answer by analysing the data and or questionairre? Please put your thinking caps on and post your questions in this thread?
Would you please send a private e-mail message to me at "firstname.lastname@example.org", so I can send you the Excel spreadsheet as an attachment? I'm sure we are all very interested to see the results of your analysis. Of course, we must keep in mind that the 1384 stories on YANA represent an extremely small sample compared to the total number of men worldwide who have been diagnosed with Prostate Cancer.
Irvine, California (USA)
Fred you raise some very valid discussion points. Could you give me that authors names, date of publication and name of journal? If you have a direct link to the paper even better. I will have a look and give you my thoughts.
Parhaps Mark may care to move your post into a new thread and we can chew the fat over the issue of Rx or otherwise for men with ten years, or less, life expectancy. It would make an interesting topic.
Please have those on AS read my journey. It reflects the YANA statistics discussed here. My story is in the 'Survivor Stories'. This is my last post.
My URO called. The biopsy of the lesion was negative. There is no cancer detected in my prostate as far as the T3 MRI can find. The lesion was most probably scar tissue from the TURP I had three years ago. My URO said that the TURP probably took out any Gleason 6 in that area – or whatever that was. (Sorry to be snarky - but it's been a frustrating experience)
Will now do a regular 6-month PSA check. As I've reported before, my PSA has never been over 1.0
Though my PC experience pales in comparison to the men here, my experience could act as an object lesson of this lousy disease and the many different ways the PSA could change based on one's individual prostate. Perhaps my experience and the path I took to track my Gleason 6 can spare some men and their family of the worrisome anxiety and wondering if you were doing the right thing on AS with a low level disease that we seem to know little about.
From initial diagnosis of PC after my TURP and the first URO ready to take it out, to the three year journey of PSA scores going up then down because of my health history that had nothing to do with PC, to using my research and finding the latest technology to put my mind finally at rest.
LESSON – you are your own doctor in this disease. Do your own studies and find the best care possible. If you find yourself in my PC position and would like to talk, please feel free to contact me.
Signing off until my periodic PSA tests gives me a red flag. All my best to the courageous men here.
First, Don, in answer to your question about whose thesis I believe John's analysis supports, I would have to say that, even here, the stats show AS in a favorable light (with even John saying: "So for low risk PCa, our typical AS warrior is on a winner"). That being said, there are not enough men involved in this analysis for the findings to be of any significance. However, it matters not because the large cohorts, like the one posted by Brian Watts, clearly show that AS is an effective strategy for low risk patients yielding outcomes similar to men who underwent immediate treatment. Think about it. As Fred said, there are no large U.S. medical institutions that restrict their AS protocol to older men that are not expected to live 10 more years. So, clearly in the minds of the medical professionals in the know at these medical centers around the country, the scientific evidence on AS has been convincing enough for them to adopt these programs for men with a life expectancy of greater than 10 years. In fact, as I stated earlier, Dr. Patrick Walsh of Johns Hopkins (an highly respected RP surgeon, interestingly enough) does not believe that these men who will likely die in the next decade should even practice AS at all, in the sense of intervening with curative intent if there are signs of progression. Rather, he just recommends observation and points out that these men should not even have had a biopsy in the first place.
Now, on a related note, I would like to thank Fred for the not unexpected, but still disturbing, information on overtreatment released by M.D. Anderson Cancer Center. If there is a positive note in that post, it is the fact that 20% are practicing AS when it wasn't so long ago that, nationally, it was 10%. Slow progress to be sure, with a long, long way to go, but progress just the same. That being said, the number of men with less than 10 years of life expectancy left that are receiving treatment is absolutely shameful and highlights better than any other example I've read of just how absurdly wrong things are in the PCa medical community. It makes me wonder where the disconnect is. That is, we have the major medical institutions mentioned above showing forward thinking by instituting their AS programs, and then you have this black mark on the PCa medical profession. Personally, I believe that the problem lies in the local urologists’ offices and the many run-of-the-mill hospitals and medical centers around the country. It's hard not to be cynical when you read of such data, and with that in mind, it is my opinion that this problem is due to these local doctors and medical institutions being either set in their old-school ways, ignorant (in the sense of not keeping up with the changing times) and/or greedy (since the treatment of PCa is certainly a highly profitable enterprise). Such a long way to go…Sigh!
Lastly, Don, in response to your comment about you not looking for John and I to "re-engage", I have this to say in the vernacular of the good people of Australia (where John resides): "No Worries"… it is not going to happen.
The use of the term "no worries" is a very interesting phenomenon. It is used by Aussies to cover almost every situation, regardless of the circumstances, and regardless of the true extent and nature of the worry. There doesn't have to be an absence of worry for "no worries" to be used. In fact, it is common for "no worries" to be used in the most worrisome of situations.
I just have a simple question or two and likely missed it somewhere along this on-going discussion (which I am not sure the end-game point is); i.e., how does anyone know if they are low risk based on the randomness of biopsies? I have heard that the only way to know full pathology is to examine the gland after it has been reviewed?
Please refer to John Bonneville's response on " some further clarification" dated Dec 27 @ 7:59pm. He does a good job describing an AS monitoring protocol. If you had a high grade tumor that was missed by a needle biopsy and started to grow, your PSA , and imaging testing would catch it.
If you are asking what the end game is in this AS debate, IMO it is recognition, respect, acceptance and implementation among the PCa medical community at large, reflecting the fact that this strategy has proven itself to be a viable option for those that meet the criteria. Until that happens, we are going to continue to have a serious over-treatment problem worldwide.