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    Old 06-06-2007, 11:31 AM   #1
    captain54
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    confused, scared and frustrated

    I have been in a very high state of anxiety and confusion in the last week as a result of a recent visit to my urologist....

    I normally visit once a year for my Viagra prescription, and in the 5 years I have seen him have only had 2 DRE's, (all negative) none the last two years...I also have never gotten around to ever having a PSA done, due to my own procrastination and fear...I'm a 52yr old male in good health..

    last week I went in to get my annual prescription, and when the doc asked me how I was feeling, I mentioned my only problem was some back stiffness that occurs when I am sitting at the computer or in the car for long periods of time..he performed a DRE and said that he noticed something suspicious....

    He immediately scheduled a biopsy..for 2 weeks down the road(didn't even know what that was)...his office called me back a couple of days later, trying to shake me down for money, saying because of my high deductible
    they need at least $1000 down, further adding to my frustration and fear...

    I told them to cancel my biopsy appt, that i would be looking for a second opinion...in the meantime, I went to get a PSA and my results came back at 1.6....

    from people I've talked to, they say that it's unusual for a Doc to schedule a biopsy without both the DRE and PSA results...seeing that this is coming out of my pocket, I want to make sure that a biopsy is really necessary at this point...I'm trying to get a second opinion, but have been shuffled around the system trying to get referrals,and when I do get a referral no one calls me back...

    I'm torn between going with my original doc's advice and just getting the damn biopsy, or continuing to look and search for someone else to give me a second opinion...

    any advice or counseling concerning my situation would be greatly appreciated....

    thank you

     
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    Old 06-06-2007, 01:47 PM   #2
    All_Sevens
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    Re: confused, scared and frustrated

    With a PSA of 1.6, I'd say you have plenty of time to seek a second opinion. I would also strongly recommend that you purchase a copy of Dr. Patrick Walsh's Guide to Surviving Prostate Cancer. Prostate cancer is a disease that is best diagnosed and treated by a highly skilled and experienced urologist. Walsh stresses the importance of selecting a doctor who rises above the mediocrity of the national incidence of side-effects associated with the treatment of the disease. The excellent doctors also tend to do a much better job in the diagnosis process. Walsh discusses the process of selecting the best doctor in your area. If you are in the Chicago area, there are several at Northwestern University.

     
    Old 06-06-2007, 02:33 PM   #3
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    Re: confused, scared and frustrated

    I agree with AllSevens that you have significant time, IF you have prostate cancer, to get a second opinion, but have a different suggestion beyond that. At 52, a 1.6 PSA is very much within the normal range. Given that your doctor made a very unusual recommendation of a biopsy based only on a DRE, I would not go into the mode of how to treat prostate cancer but first get in the mode of determining whether you have it at all. That has not been determined, and many people would seek a second opinion before having a biopsy even if they had excellent insurance, a positive DRE, and a PSA score that was very questionable. In short, have a consultation and DRE with another doctor in the near future.

     
    Old 06-06-2007, 02:36 PM   #4
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    Re: confused, scared and frustrated

    I agree with AllSevens that you have significant time, IF you have prostate cancer, to get a second opinion, but have a different suggestion beyond that. At 52, a 1.6 PSA is very much within the normal range. Given that your doctor made a very unusual recommendation of a biopsy based only on a DRE, I would not go into the mode of how to treat prostate cancer but first get in the mode of determining whether you have it at all. That has not been determined, and many people would seek a second opinion before having a biopsy even if they had excellent insurance, a positive DRE, and a PSA score that was very questionable. In short, have a consultation and DRE with another doctor in the near future.
    The mother of anxiety is uncertainty, and courage is action in spite of fear. Strong possibility in your case that the latter will dispel the former! Get going today!

     
    Old 06-06-2007, 02:55 PM   #5
    captain54
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    Re: confused, scared and frustrated

    Quote:
    Originally Posted by All_Sevens;302***1
    The excellent doctors also tend to do a much better job in the diagnosis process. Walsh discusses the process of selecting the best doctor in your area. If you are in the Chicago area, there are several at Northwestern University.
    I finally got to get an opinion from a urologist at the University of Chicago urology dept, and he suggested I go ahead with the original plan from my original doc and get the bioposy....that's all he said....I guess (I'm assuming) his thought is if the original doc felt something, that's reason enough....it just so happens that my original doc works in association with the U of Chicago, giving them referrals of people he has diagnosed with prostate cancer

    of course, the U of C doc did this all over the phone without checking me out.....but some part of me wants to get this
    biopsy done and over with

    I kept the appt for next week,...but now I'm thinking I should put it on hold again and call Northwestern or some other recommended place and actually go in and get another DRE?

    what do you think?

    Last edited by captain54; 06-06-2007 at 03:20 PM.

     
    Old 06-06-2007, 03:53 PM   #6
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    Re: confused, scared and frustrated

    DRE'S are subjective: what might feel fairly normal to one could seem suspicious to another.

    Personally I'd firstly get a 2nd DRE and opinion.

    Although your PSA is a low reading, there is no such thing as a "normal" PSA or range as it's influenced by several things including prostate size. Any rate of change in PSA readings is more important than one isolated reading and needs watching.
    It's necessary to have regular PSA's to see if there's any trend.

    John

     
    Old 06-06-2007, 04:32 PM   #7
    captain54
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    Re: confused, scared and frustrated

    I think you hit the nail in the head, John..

    where specifically can I go online or wherever to find the best urologists for diagnosis in my area? (chicago, Illinois....usa)?

     
    Old 06-06-2007, 08:35 PM   #8
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    Re: confused, scared and frustrated

    Someone I met on another web site did a home-grown consumer report on excellent urologists. He mentioned several in the Chicago area. The most reknown is William Catalona, at Northwestern University. He also mentioned two other doctors at Northwestern: Misop Han (trained at Johns Hopkins) and John E. Garnett. At the University of Chicago Hospitals, he mentioned Gregory P. Zagaja. At the University of Illinois at Chicago, he mentioned Allen M. Chernoff. Finally, at Loyola University Med. Center in Maywood and at Hines Veterans Hospital, he mentioned Robert C. Flanigan. The guy who did this report had very successful prostate surgery at Johns Hopkins, and was stunned by the difference in outcomes that he had as compared with several of his contemporaries who also had prostate surgery with other doctors. He wanted to steer new patients toward urologists who have a reputation for excellence.

    If your current urologist does not meet the criteria stated by Walsh in his book (i.e. doctor must have lots of experience, must track and compile all outcomes, must have excellent record of diagnosis and treatment, and must stay current with latest research), then I would seek a second opinion. Like I said, the doctors who are the best at treatment are generally also the best at determining whether you have cancer in the first place. Some doctors do not conduct biopsies as well as others, and end up with more false negatives. Check out your doctor before you get too far down the road with him or her, and get a second opinion if you have any concerns. You're in charge here.

     
    Old 06-06-2007, 10:05 PM   #9
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    Re: confused, scared and frustrated

    Quote:
    Originally Posted by All_Sevens View Post
    At the University of Chicago Hospitals, he mentioned Gregory P. Zagaja.

    If your current urologist does not meet the criteria stated by Walsh in his book (i.e. doctor must have lots of experience, must track and compile all outcomes, must have excellent record of diagnosis and treatment, and must stay current with latest research), then I would seek a second opinion. Like I said, the doctors who are the best at treatment are generally also the best at determining whether you have cancer in the first place. Some doctors do not conduct biopsies as well as others, and end up with more false negatives. Check out your doctor before you get too far down the road with him or her, and get a second opinion if you have any concerns. You're in charge here.
    I actually did contact Dr. Zagaja's office to get a second opinion and he briefly looked at my situation and had his nurse call me back and tell me to go ahead and get the biopsy from my original doctor. It turns out my original doctor sends people to him after they've already been diagnosed as positive. So he must be very highly regarded. Thing is, he really doesn't know me nor has he even talked to my doctor. And the nurse did say that they specialize in treating people rather than diagnosing them.

    I did a little research on my doctor and found out that he graduated 17yrs ago, his speciality is general urology, and his secondary interest is cancer...

    After I talked to Dr. Zagaja'a office I went ahead and rescheduled my biopsy, but as a direct result of coming on this board and your advice I'm calling tomorrow and canceling, then probably making some calls to Northwestern to see if I can get any one there to have a look at me, do another DRE if need be...as you have mentioned, my PSA is still within the "normal" range and I can afford to take the time I need to take.

    So I feel pretty confident and much more reassured now that I am on the right track, thanks to you....

     
    Old 06-06-2007, 11:52 PM   #10
    All_Sevens
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    Re: confused, scared and frustrated

    If your current doctor felt something suspicious on the DRE, the second opinion will definitely involve another DRE. Abnormal DREs are significant. You don't need to burn any bridges with the current doctor, but it is your right to get a second opinion on his suspicious finding. If two doctors independantly agree that the DRE warrants a biopsy, you can choose the doctor that you feel most confident in to perform the biopsy.

    Read Walsh's book and be an informed consumer. As you found out, these doctors are going to be demanding cash on the barrelhead, so you should demand the best care.

     
    Old 06-07-2007, 07:42 AM   #11
    captain54
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    Re: confused, scared and frustrated

    Quote:
    Originally Posted by All_Sevens View Post
    If your current doctor felt something suspicious on the DRE, the second opinion will definitely involve another DRE. Abnormal DREs are significant. You don't need to burn any bridges with the current doctor, but it is your right to get a second opinion on his suspicious finding. If two doctors independantly agree that the DRE warrants a biopsy, you can choose the doctor that you feel most confident in to perform the biopsy.

    Read Walsh's book and be an informed consumer. As you found out, these doctors are going to be demanding cash on the barrelhead, so you should demand the best care.
    thank you Sevens

    I did start to go thru the Walsh book, very good....does he have an update to this edition..? seems its dated 2001..any other books out there anyone can recommend that are a bit more current?

     
    Old 06-07-2007, 08:10 AM   #12
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    Re: confused, scared and frustrated

    AllSevens: That was a remarkably detailed and helpful response you made, even including many names!
    It occurs to me that in the environment of today, most doctors would be conservative in recommendations, particularly if they had never examined you. Since it is very unlikely that you have an emergency circumstance medically (as distingushed from the psychological anxiety!), seeking a second opinion is the suggestion I would make. However, for some of us, me included, if we were in your position, the mere mention of possibly needing a biopsy would be highly likely to result in one due to individual personality factors!

     
    Old 06-07-2007, 08:19 AM   #13
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    Re: confused, scared and frustrated

    Quote:
    Originally Posted by Flyfisher View Post
    AllSevens: However, for some of us, me included, if we were in your position, the mere mention of possibly needing a biopsy would be highly likely to result in one due to individual personality factors!
    so are you saying that if I indeed need to have the biopsy done, my choice of who performs it is based on their personality?

     
    Old 06-07-2007, 11:45 AM   #14
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    Re: confused, scared and frustrated

    captain, i think fly is referring to your personality and style. that's been discussed here; apparently many of us are the take charge go for it types, and thus this group -- self selected, me included -- opted for surgery, which we viewed as the ultimate solution. in my case [i'm careful to not speak for others] i know that many of my choices were affected at least in part by my personality and style. and yes, if my doctor was leaning toward biopsy, i'd run toward biopsy. [which i did; my doctor siad if i was worried about my drifting PSA, he'd send me for a biopsy. i jumped at the chance and the rest is history. i'm not worred about my PSA number anymore. it's undetectable.]

     
    Old 06-07-2007, 11:57 AM   #15
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    Re: confused, scared and frustrated

    Quote:
    Originally Posted by CRS907 View Post
    captain, i think fly is referring to your personality and style. that's been discussed here; apparently many of us are the take charge go for it types, and thus this group -- self selected, me included -- opted for surgery, which we viewed as the ultimate solution. in my case [i'm careful to not speak for others] i know that many of my choices were affected at least in part by my personality and style. and yes, if my doctor was leaning toward biopsy, i'd run toward biopsy. [which i did; my doctor siad if i was worried about my drifting PSA, he'd send me for a biopsy. i jumped at the chance and the rest is history. i'm not worred about my PSA number anymore. it's undetectable.]
    got it...

    my doctors office called and they understand my need to get a second opinion, but don't wait too long....I was able to schedule an appt with
    Dr Garnett at Northwestern Memorial, but he and actually any of the
    docs there don't have an opening for 6 weeks....I made the appt anyway.
    now I'm concerned that I'm putting it off to long....

    the worry never ends......

     
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