RE: Re: Question on doubling time

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Lynn, ultimately it may come down to factors such as cost as to what kind of treatment your husband can get or afford. Having said that however, your husband , when exploring his options as to what his best course of action be, should not be based on cost factors or accessibility to any specific designated hospital or doctor. If you did so then he would be basing his decision not on what's best for him, but merely what he could afford or what's convenient for his insurance carrier. What hosptial you go to and what doctors you see do matter and matter quite a bit. If you keep this in mind during your search , no matter what option he ultimately chooses, he will know that he has explored the best and simply didn't do what was expedient or out of

desperation. Decisions made under duress are always the ones that are the most difficult to make. That is why a contract signed while under duress is legally null and void on it's face. Well, having just been Dx with Cancer and having to negotiate treatment with a doctor and hospitaI is about as much duress as anyone can imagine. Yet, we are put in a position to have to make those decisions under those conditions anyway. It is a unique situation as regards to the issue of duress. His decision should be based entirely on what he thinks is best and he should not be rushed, cajoled into anything and his decision should be independent of bothy locality and cost. Once he thinks he knows what he wants to do, then of course you have to deal with the reality of whether or not you can afford whatever it is he wants to do. You may not be able to afford the best of doctors or hospitals. Not everyone can

get to see the best Urologist or Oncologist there is or be treated at the best hospital in the country or their area. But, who treats you and where you are treated does matter and there is no escaping it. You have time to do some research and come up with the decision your husband thinks he can best live. It's important not to panic and not to rush into anything . Whatever treatment your husband ultimately choooses, that decision should be his and his alone.

I began mulling over my own options prior to the availability of the internet and back then all I had access to were public libraries. I read all the books I could but none were like PUBMED or other sources of information that now exist and are accessible to everyone online. I remember one book in particular, not the author or any of the content but one particular passage about choosing a surgeon. The author of the book was a doctor and he said that in regards to having one's prostate removed '''any good general surgeon '' could be chosen for the operation. Back then, I almost believed it but of course I know much better now. The days of Happy Days are over and the reality is that you need to choose both your hospital and doctors both carefully and wisely. If money is an issue then of course your options will be quite limited. Just keep

in mind that when having one's prostate removed or undergoing radiation treatments that not all hospitals and not all doctors are created equal.

Take as much time as your husband thinks he needs to make his decision and make use of the internet and the various online support groups to gather whatever information you can. Terry's website which he has already provided a link to will put you in touch with many patients whose treatment stories are already online for you to read and the patients available to provide whatever assistance they can. These are the kinds of resources that didn't exist for patients not that long ago.

Good luck Lynn, BOB

From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of LYNNSent: Tuesday, May 31, 2011 6:37 PMTo: ProstateCancerSupport Subject: FW: Re: Question on doubling time

Thank you all for your replies. It is very reassuring that we can ask questions, and know that there are people out there who care.To answer a little about my husband, he will turn 65 in a couple of months. He was staged T1c. He has VA benefits currently, so we are a limited on what tests we can order. We have already been told that the doctor doesn't want to make another appointment until my husband has treatment. He can't do that, but the sentiment was sincere. He really wants my husband to get treatment now and not later. But it makes it more difficult to get another PSA in a couple of months because to them it is unncessary. I know ordering one at a different facility has the issue that we wont know what assay the company is using. So the results could be useless to us.So, we are looking at test scores and trying to decide if this PSA reading means nothing or everything and where to go from here. I appreciate your

insights and best wishes.Thanks again,Lynn>> It is extremely problematic to base any assessment of PSA kinetics, whether doubling time or PSA velocity (just the rate of increase in PSA per year) on a few PSA readings, especially in comparing just a pair of readings. PSAs can vary by as much as 25% or more just from normal day-to-day changes in a mans biology and lab variance. If one has episodes of prostate inflamation, there can be what appear to be dramatic changes between two PSA readings from the inflamation.> > In my own history, between two subsequent PSA readings from 2 to 3 months apart, I have had apparent PSA velocities over 2 ng/ml per

year, both positive (increasing PSA) and negative (decreasing PSA).> > The general advice is that PSA doubling times should be based on at least 3 readings at least 6 months apart. Preferably, at 6 or more readings spaced over at least 2 years.> > The vast majority of prostate cancers in early stages will not present a dramatic change in either doubling time or velociy in a space of a few months. Exceptions usually involve Gleason sums of 8 or more.> > In Lynn's husbands case, I agree that the Gleason 4+3 is a focus of concern. Hence the advice to get a second opinion on the pathology from an expert on prostate cancer pathology. Also, if the biopsy used the older 6-core sampling, I would have a repeat biopsy of at least 12 cores.> > The PAP test is a good one to suggest whether or not cancer has escaped the prostate. For early cancers it is a better diagnostic than the much more expensive bone

scan.> > The Best to You and Yours!> Jon in Nevada> > , May 30, 2011 5:20 PM> > To: ProstateCancerSupport ; adopt4u@> > Subject: RE: Re: Question on doubling time> >> > I guess a case could be made for Lynn's husband that with the prostate gland> > still intact, concern should be evidenced when PSA velocity is greater than> > 0.75 ng/mL within a year (which certainly is his case). It would also be> > reasonable to consider a PAP (Prostatic Acid Phosphatase) blood serum test> > to make sure that PC confined to the prostate is not approaching a critical> > PAP threshold of 3.0 or higher which confers a poorer

prognosis in the face> > of RP, or any form of RT. What concerns me most with this man is that> > Gleason Score 4 + 3 cancers are associated with a three-fold increase in> > lethal prostate cancer compared with 3 + 4 cancers. I hope something> > motivates him to action.> > > > > > > > Chuck> > > >>