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I was diagnosed two weeks ago. Annual PSA had risen from 1.4 to 3.1.
The urologist recommended MRI which showed an \"abnormality "in the left node, size 2.1 x 1.5cm. Biopsy followed and first comments from the urologist were encouraging, Gleason 3+3 enclosed. He later said that the scan showed possible penetration of the capsule but \"MRI scans can be a bit woolly\". Yesterday I saw a radiation oncologist and got a rather more scary opinion. He said that the size of the cancer would normally produce much higher PSA levels and described it as \"very unusual\" and possibly much more aggressive than the Gleason was indicating.He also said that the MRI clearly showed penetration and that there was a significant chance of bone metastases. This goes against all that I have read online e.g. less than 1% chance of spread if the tumour size is less than 12cc or PSA <15. I am having the pathology redone and the MRI re analysed. Anyone else had such confusing experience?
Welcome to the confusing world of prostate cancer, Martin. What you have said illustrates what an old urologist told me back when I was diagnosed in 1996 "Don't get a second opinion, it will only cause confusion." Needless to say I ignored his advise and found out just how inaccurate diagnostic tools can be. I had four opinions on my Gleason Score - they came back as 6, 5, 5 and 7, so I had a good range there. My staging was equally confusing. T2b, T1c and T4 - this altter from an MRI scan where the interpretation was that the disease had spread beyond the prostate.
I think you are very wise to seek more information. One thing that should be clatified, if it has not been done, is how many positive needles there were in your biopsy and how many of these came from the "abnormality".
As I learned from an old hand soon after I was diagnosed, the Goldne Rule of prostate cancer is There Are No Rules. so the radiation oncologist MAY be right but as you rightly say, that would be a very unusual situation.
Good luck with your enquiries. Let us know what turns up
Thanks, Terry. Good to know I'm not alone.The pathology report, itself is odd. -14 cores of which 7 are positive. - the urologist told me he was taking 12 (I didn't count).
Martin by all means get a second opinion, but take heed of the expert medical advice that you are given. Have your treatment, whatever that may be, and get on with living your life. Terry is an expert at pedalling misinformation. Put your faith in your treating physicians. To do anything otherwise, may provide outcomes that you are less than happy with.
If anyone is interested, this man, John Bonneville, has been calling on this Forum occasionally for many years now, always with the accusation that I pedal misinformation. When asked to identify the misinformation, he retreats, threatening never to return. I took some time mout last year to try to deal with the issues he raises - anyone interested in this exchange can go to MISINFORMATION .
Terry let me be quite clear about the misinformation issue.
My critique is unwavering, namely your cynicism of conventional scientifically based medicine and the danger that proliferating such views, through this site, may pose to a newly diagnosed men in not accessing appropriate medical intervention when such is clearly warranted.
To any reader who doubt's the validity of my claim, just go and revisit Terry's story, particularly the early days. Note the distrust for conventional medicine expressed. Note Terry's rationale for the decisions taken back then, and sadly contrast that with the outcomes he has achieved as a consequence. Note that Terry was in charge of every facet of his journey. Terry always shopped around until he found a practitioner amenable to his ideas. Physicians in a sense were Terry's puppets, after all Terry knew far more about PCa than they did, and still does.
Guys this debate with Terry goes back a long way. I also used to have my story on this website, but I asked Terry to withdraw it, which he did, when it became apparent that we had such dissimilar views on the management of PCa. I had fundamental ethical issues with Terry's promotion of watchful waiting in men with disease profiles that clearly warranted medical intervention. Terry and I have discussed this issue may times and we still beg to differ. My concern was that men with a potentially curable PCa (and Terry was one of those) would forestall treatment until the curative window has closed and I expressed as much to Terry, on many occasions.
Terry and I both had a similar disease profiles but I had a higher gleason grade. Being a retired health professional, not surprisingly, I chose conventional medical treatment and it served me well. We all know the path Terry took, his choice of course, and all I ask is for him to consider his legacy to others that follow.
Guys I wish to state I have the utmost respect for Terry both as a PCa warrior and a very decent human being albeit with a few loopy ideas regarding PCa management.
Until next time Terry.
best wishes
john
p.s. I have never retreated from anything Terry and you know that. If you want a debate, bring it on!!
I think what John is saying is " If you don't agree with me then you are spewing misinformation". Perhaps John could give some specific examples of this "misinformation" so that we all can judge for ourselves.
I disagree that continuing this debate would serve any useful purpose. Everything that could have been written has been. Men uncommitted to either polarity will take the wisdom expressed from both viewpoints and make up their own minds (with guidance from their physician) after challenging things they don't understand or have doubts about. It is important that we own our chosen treatment path, for better or for worse, but that we take soundly based advice in so doing.
Much of what both have written over the years I have found valuable, but I'm discerning enough to filter out the stuff that seems unwise in my own case. I hope every reader of this forum does that too!
I didn't know we were suppose to be clearing all of our comments or questions with you so you could determine if they
served any useful purpose. "Everything that could have been written has been". Really? How did you come to that conclusion?
I don't think Old Codger is suggesting for a minuite that all posts have to be cleared by him but rather that this subject has been done to death and should not occupy any more of the space on this Forum.
I don't know if you went to the link I included in my last post, but that summarises the position well. If you want to see more of John's views then click on his name when the Index is open and you will be able to see all of his posts including this threat/promise in December 2009:
Terry we have discussed misinformation before, and you know I have strong views about the spreading of. Henceforth I shall no longer post on this forum.
Unfortunately he did not keep his word.
As Allen Z says, this kind of posting does not help newly diagnosed men at all and I suggest we consider it closed.
