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Hello Everyone. I have just joined this forum and posted my story in the experiences area. I thought I would post here as well to say hello and possibly gain some additional advice from the readers of this forum. Here's a bit of my story:
I am 48 years old and received my first biopsy results about a week ago. Both my father and older brother have had prostate removal. Dad via open, brother via robotic.
I was told that I have four cores out of 12 positive for PCa, all rated as a Gleason (3+3)=6, plus one HGPIN. My staging is T2B. My most recent PSA, taken two months before my biopsy was 4.0.
My inclination is to perform some active surveillance for a while and monitor my PSA levels every three months and take this step by step, not rushing into treatment.
I suppose I am looking for some support of my intentions to pursue active surveillance or for some people to tell me I'm being a complete idiot and that I should get this taken care of ASAP.
As most of you know, this is NOT an easy decision!
It looks like it is my day to post in that this is my third one today. Your story has yet to be posted in the experiences area so I don’t know your whole story. It would be helpful to know the % of cancer in your cores since that is a common factor when researching AS criteria. Still, you have listed enough for me to give you my opinion.
Personally, I have been practicing AS for the last four years. My last biopsy results showed cancer in 4 of 12 cores just like you (all 4 were 45% cancerous. I should note that my first three biopsies showed cancer in no more than 2 cores). Also, like you I am relatively young in that I am only 55. I have not published my experiences because I have, for now, opted to tell my story on the forum over time. My latest post, which was a reply to Tom F. is one that you should read as someone who is considering AS. It looks like, despite a great deal of research, I may have made a critical error that may adversely affect my long term prognosis. These are the risks you take. You can do your due diligence and still miss something.
IMO, you should NOT choose AS based on your stats. While there is no consensus, if you look at most of the published AS criteria, four cores is considered too many to choose this option, with some sites listing a maximum of three, while still others list it as two (Also, you should have no more than 50% cancer in any ONE core). Plus, your T2b clinical stage does not meet the criteria on most sites either, with most of them listing T2a as the highest stage.
As far as family history is concerned, the jury is still out. The following is an excerpt from the National Cancer Institute website, specifically www.cancer.gov/cancertopics/pdq/genetics/prostate/.../page4: “Various studies have shown better, worse, or similar survival rates after treatment in men with prostate cancer who have a family history of affected first-degree relatives, compared with those who have a negative family history. There is extensive literature addressing whether family history of prostate cancer is linked with aggressive tumor behavior and consequently a worse prognosis. The most current longitudinal report suggests that this is not likely the case”.
AS is all about monitoring your cancer while maintaining your quality of life, and seeking treatment when & if there are signs of progression. If you are successful, your AS will not affect your long term prognosis if you come to have treatment down the road. The risk you take of having your cancer leave the gland is a trade-off for keeping your quality of life intact, but in your case, based on your stats, that risk is too great and most doctors that support AS as an option would agree. You are just too young with a full 28 years of life expectancy left to take the chance. Personally, four years ago, I said that I would take 5 good years over 15 years following treatment, but I have to say that if I find out that my cancer has escaped the gland affecting my long term prognosis & survival, I would have serious regrets.
If you choose this risky path, then I urge you to have all the tests done that are available to you, including a CDU & MRI scan. In addition to my biopsies, I personally have had DREs & PSAs, (including a check of my % Free PSA and my PSA Density & Velocity), as well as a PCa3 & ProstaVysion genetic test. Next up is the CDU. If the results of any of these tests had been bad, I would have had surgery. (Note: Despite all my test results being good, I still might be in trouble as I mentioned).
I recommend that you use this time to do a lot of individual research on treatment options. Use this site, & others like it, to compliment your research, not replace it. Also, take your time. Even with your stats, you need not rush into a decision – too much is at stake.
Best of luck to you. I will look for your updates in the experiences section in the future.
Alan in the USA
1. You are not an idiot - veen if you devide to follow your father and brother, there is no call for immediate action. Prostate cancer with the kind of profile you have now does not suddenly lead over the gland boundaries and head for the heaps of bones that makes up your skeleton. You have the time to investigate and come to a conclusion that satisfies YOU and YOUR diagnosis - not ME and MINE.
2. I still do not believe that age is relevant - at least on the young side. The majority of prostate cancer deaths occur in men in their late 70s and 80s but men die at younger ages from all manner of things and even at later ages are far more likely to pass on from heart disese than anything else. Young men have to live long enough to die from PCa - and many will not make it.
3. Please do consider getting an expert second opinion on your biopsy results. They are SO important.
Good luck - incidentally, as I said in my e-mail to you, your story hasn't turned up yet for input in the Experiences page.
Both Alan and Terry know much more about AS than I do... I went the DaVinci Robotic Laproscopic Surgery route.
You have a lot of research ahead of you and, as Terry suggested, it's best to take the time to fully evaluate your options AND get a second opinion: for biopsy results; and recommended course of action.
Regardless of what treatment choice you decide upon, there are no guarantees. All you can do is make sure you inform yourself as best you can and make the decision with which you are most comfortable.
Since you only recently learned of your diagnosis, I doubt you have had time to digest what you have been told.
Perhaps a study of Elisabeth Kübler-Ross' Stages of Grief, published in her "On Death and Dying" book (available online or in most any library; you can see them here http://changingminds.org/disciplines/change_management/kubler_ross/kubler_ross.htm ) will enlighten you to just what you are feeling and make it easier for you to recognize when you are in the proper frame of mind to make this extremely important decision.
These are emotional stages that everyone, facing an emotional situation (life-threatening and non-life-threatening, like losing your job, etc.), experience - and they are not necessarily experienced sequentially - e.g. you can bounce back and forth between various stages before eventually (hopefully) reaching the final stage ("acceptance").
I don't know that this will help you, but it certainly helped me through some rough times.
When I started my A.S. over two years ago after I did considerable research on my GS6 (1 core, <10%) I was convinced A.S. was right for me, but my main concern was if my cancer should grow, how would I know the "right time" to seek treatment? I wanted the "Goldilocks timing" --not too soon and not too late.
I feel fortunate in finding the PRIAS Project.
On the first page of this study is a simple flowchart you can follow to determine when they recommend you seek treament. I had my quarterly PSA tests and yearly biopsies and followed the flowchart. Then late last year my PSADT fell to less than 1 year and when the flowchart asked "PSADT > 3 years?" the "No" answer directed me to seek "Definitive Therapy." So I backed my bags went to UFPTI for a proton "radiation vacation."
In retrospect I wished I could have stayed on A.S. but because my cancer didn't cooperate, at least I had a "plan" for when to seek treatment.
Alan/Terry/Danny - Thank you very much for your thoughtful replies. I take every word to heart and I'm sure I will read them numerous times before I make a decision on how to proceed. Your feedback is priceless to me at this time in my life.
The consideration of "Active Surveillance" (formerly "watchful waiting") should be based on some indication that your cancer is not growing rapidly or about to escape the confines of your prostate gland and set up housekeeping someplace else. Unfortunately as imperfect as it is, the PSA test is the only means available to monitor POSSIBLE cancer growth. Since factors other than cancer growth can result in PSA increases, your should take precautions (such as you did in avoiding ejaculation) before each test to try to have the same conditions present in your body when the blood for the test is drawn. This may reduce the severity of the fluctuations exhibited in your last three PSA tests. Following is some old information you can use as a guide (the columns will line up if displayed in a unispaced font such as Courier):
Condition/Manipulation Effect on Persists
PSA Level Up To
Acute bacterial prostatitis 5-7 fold 6 weeks
Acute urinary retention 5-7 fold 6 weeks
Digital Rectal Exam (DRE) Variable 3 days
Exercise - bicycle 0-3 fold 1 week
Prostate biopsy Very Variable 6 weeks
Prostate massage Variable 6 weeks
Ejaculation Variable 3 days
TURP Very Variable 6 weeks
There can also be a great amount of variability in any individual's PSA from day to day, as discovered by Terry in an experiment he did many moons ago. You should always use the same lab and same assay. There exists no standardization between different "brands" of PSA tests and different essays will produce different results for the very same blood sample.
If future 3-month PSA tests do not show inordinate increases, then the continuing active surveillance track can be pursued. I do suggest that you get a Free PSA test done the next time, since the free vz. bound PSA ration can give an indication of the aggressiveness of your cancer.
Back in 1997 when I was first diagnosed, the velocity with which my PSA was increasing did not provide the luxury of AS (then "WW"). Use the time to keep investigating possible treatments, so that if and when the time comes, you will be able to make an informed decision.
Good luck! Believe it or not, I still recall the difficulty of making my treatment decision 13 years ago.
