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Thread: Hi All Newbie here

  1. #21
    Guitarhunter, nothing popped out when I did a quick search for anterior lesions and PSA. But PSA alone would be no way to discern location. There are so many factors affecting PSA. Any difference in location would be lost in the shuffle. It's hard enough to know if a PSA rise is from cancer.

    I would think you need to be closely followed, having a PIRADS 5, yet a negative biopsy.

  2. #22
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    Quote Originally Posted by guitarhunter View Post
    I read somewhere once that anterior lesions do cause a higher PSA but I can't find it now. Do you have a link to a study or something? My PSA is also high and there was a lesion on the MRI in the area but after 2 biopsies they haven't found any cancer cells. I'm due for another follow-up PSA this month so we'll see where things are now.
    WOW. I think I would be after another BX.. just google " hard to find Anterior TZ tumors".. I got a negative BX in 2017. then this year they did fusion BX and hit the jackpot (poor joke).. I went from AS to needing to take action soon. Ed
    66 yo
    2013 PSA 13.99 BX=DX PC g3+3 2 cores 40%
    MRI apr 2014 lesion 1.6x1.9x2.1
    BX 2014 same as prior 3+3
    MRI 2016 MRI lesion 1.7x1.9x2.1
    BX 2017 false negative= no PC
    MRI 4/25/18 lesion 1.5x2.3x2.5
    Fusion BX 5/9/18 g3+5=8 4 cores 40%
    2nd opinion SFVA 3+4=7
    3rd op from JHU 7/2/18 4+3 (grade group 3)
    4 cores 60,70,30,30% (70% gleason pattern 4)
    start ADT 8/28/18

  3. #23
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    Thanks for the replies and insight guys (and Gal ).. RT and RP seem to have similar success. and I could seek RT soon.. to add to the mix. I'm diabetic and high blood pressure, and need other surgeries before too long, (both knees replaced, inguinal hernia) Ed
    66 yo
    2013 PSA 13.99 BX=DX PC g3+3 2 cores 40%
    MRI apr 2014 lesion 1.6x1.9x2.1
    BX 2014 same as prior 3+3
    MRI 2016 MRI lesion 1.7x1.9x2.1
    BX 2017 false negative= no PC
    MRI 4/25/18 lesion 1.5x2.3x2.5
    Fusion BX 5/9/18 g3+5=8 4 cores 40%
    2nd opinion SFVA 3+4=7
    3rd op from JHU 7/2/18 4+3 (grade group 3)
    4 cores 60,70,30,30% (70% gleason pattern 4)
    start ADT 8/28/18

  4. #24
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    I can not see how you were a candidate for AS with a PSA over 10.

    I'd suggest you find a new team of doctors. Preferably a cancer center. You have a lot ahead of you and one source with a team that talks to each other and will be direct and honest with you may be able to turn this around for you.

    The risk is high it has metatiszed. Obesity (fat/hormones) will fuel it once out of the barn. You want a whole new game plan. RP may be an option, but only if the other experts on the team concur.

    The challenge for you is how to move forward differently than you have in the past. For example, you mention doing more research. Maybe, but the risk is the same. You spend time and what you choose to accept in what you find supports your view of things and there you are again, further down the road, with more cancer and less options.

    One view is you're not good at this. Everyone is good at somethings and not good at other things. You may not be a good advocate for your health. Nothing wrong with this. The risk is you ignore/dismiss the insight.

    Find a good reputable cancer center associated with a reputable healthcare system and turn yourself over to them. Tomorrow. Imo.
    Last edited by Another; 07-04-2018 at 03:24 PM.

  5. #25
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    @Another, I assume you writing to me. if so I think the fact that Finasteride. reduced my PSA to 2.61 in just a few months, allowed them to stay with AS all this time gleason has been 3+3, 3+3. and negative on 3 BX over 5 years.(until this last fusion BX). Also to be frank I am in the VA system and on social sec. so getting a whole new team don't look promising. I messaged my uro yesterday and told her I want to get a RO. she said fine. she is going to reach out to see what is available to me for treatment. she said All the VA has is EBRT... BBT for example will require some strings to be pulled in the VA "choice" program and she will help. Ed
    66 yo
    2013 PSA 13.99 BX=DX PC g3+3 2 cores 40%
    MRI apr 2014 lesion 1.6x1.9x2.1
    BX 2014 same as prior 3+3
    MRI 2016 MRI lesion 1.7x1.9x2.1
    BX 2017 false negative= no PC
    MRI 4/25/18 lesion 1.5x2.3x2.5
    Fusion BX 5/9/18 g3+5=8 4 cores 40%
    2nd opinion SFVA 3+4=7
    3rd op from JHU 7/2/18 4+3 (grade group 3)
    4 cores 60,70,30,30% (70% gleason pattern 4)
    start ADT 8/28/18

  6. #26
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    Quote Originally Posted by ezhoe View Post
    @Another, I assume you writing to me. if so I think the fact that Finasteride. reduced my PSA to 2.61 in just a few months, allowed them to stay with AS all this time gleason has been 3+3, 3+3. and negative on 3 BX over 5 years.(until this last fusion BX). Also to be frank I am in the VA system and on social sec. so getting a whole new team don't look promising. I messaged my uro yesterday and told her I want to get a RO. she said fine. she is going to reach out to see what is available to me for treatment. she said All the VA has is EBRT... BBT for example will require some strings to be pulled in the VA "choice" program and she will help. Ed
    Ugh. That sucks. If you had kept your PSA you would have known something was seriously amiss with the high numbers continuing to rise and nowhere to hide. The Finasteride hid your most important sign of the disease and a sign that disqualifies you for AS, as I understand it.

    The assumptions around how prostate cancer is supposed to behave in the presence of Finasteride are questionable, imo. In addition, you are a higher risk profile with obesity.

    I am not an expert on AS, but you may want to confirm with experts outside the VA if assigning you to AS was appropriate. You want to generate some leverage to get you out of your current care and into qualified care at the VA expense.

    I'd suggest a couple of referrals; a new urologist skilled in prostate cancer, a RO, and a MO, and all outside the VA. Your doctor has opened the door by telling you their limitations.

    I'd suggest all the noise you can make be made to get attention to your case. Can't you go outside the VA if adequate healthcare is not available? Finasteride while on AS with a steady PSA at 14? (You don't share your PSA velocity.) Is that good medicine? I don't think so and you now see why.

    If you have not self directed this therapy you have a complaint (an even then it is very arguably bad medicine) and some serious healthcare in front of you, imo. Time for a new team, period, and the VA can pay the bill, imo. I'd give the strongest push back to get out of the VA on their dime. If they push back, you may need to lawyer up to make this happen. Government agencies respond when dealing with professionals.
    Last edited by Another; 07-05-2018 at 03:06 PM.

  7. #27
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    @Another. I can't change the past but I came off the Finasteride because I didn't like the SE. so that 2.61 psa turned to 2.7,3.0,3.7, etc, etc, so I assumed something else was driving big psa #'s and pushed for AS to continue. future BX proved (in my mind) that AS was the way to stay.. (URO went along but didn't like it). so here we are now. nothing to blame it on but my ignorance and stupidity. anyway fat forward to today.. found out that UC Davis (CA) has a well established and well respected RT system (BBT,ebrt,imrt,cyberknife etc) and also Stanford (sf) are both in the VA choice program and are partnered with VA nor cal.. we are working (running) on a path forward with one of them.. Ed
    66 yo
    2013 PSA 13.99 BX=DX PC g3+3 2 cores 40%
    MRI apr 2014 lesion 1.6x1.9x2.1
    BX 2014 same as prior 3+3
    MRI 2016 MRI lesion 1.7x1.9x2.1
    BX 2017 false negative= no PC
    MRI 4/25/18 lesion 1.5x2.3x2.5
    Fusion BX 5/9/18 g3+5=8 4 cores 40%
    2nd opinion SFVA 3+4=7
    3rd op from JHU 7/2/18 4+3 (grade group 3)
    4 cores 60,70,30,30% (70% gleason pattern 4)
    start ADT 8/28/18

  8. #28
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    Good work!

 

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