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    Old 02-08-2020, 02:13 PM   #1
    IceStationZebra
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    Salvage radiation question?

    I was researching how aggravated I should be by the single decimal vs the uPSA and I tripped across an article from Harvard where they interviewed 3 experts on salvage radiation (of course I didn't book mark it and cannot find it again).

    One of the experts was asked what he wanted potential salvage radiation patients to know about it and his answer surprised me.

    His answer was that salvage radiation would cause total erectile dysfunction. I knew it could aggravate continence and ED but this guy was speaking as if it was total and permanent.

    Did I misunderstand him?

     
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    Old 02-08-2020, 02:44 PM   #2
    Gary I
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    Re: Salvage radiation question?

    Thankfully, you DID misunderstand him!
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    Old 02-08-2020, 04:05 PM   #3
    IceStationZebra
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    Re: Salvage radiation question?

    Quote:
    Originally Posted by Gary I View Post
    Thankfully, you DID misunderstand him!
    Well I didn't look at the date of the article but maybe it was old. I read it several times to make sure it wasn't me....I'm glad to hear that total ED isn't the case.

    I hate to be a pessimist but I'm headed there. The doc said that my cancer barely touched the edge of the margin at a point like a triangle. He said he's rarely seen cancer get out from a setup like that, which was my queue to start expecting it. Consequently, I really don't have any anxiety about the PSA testing every three months. Knowing the fight is coming takes away the worry.

    I'm not being negative nancy but I am just that guy who defies comvention.

    The good news is that my initial test was <.1 . So if I have BCR it will have to grow and increase, we didn't start out at .3 or .4.

     
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    Old 02-08-2020, 05:55 PM   #4
    DjinTonic
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    Re: Salvage radiation question?

    IMO anyone seriously concerned with a BCR encounter requiring salvage treatment should be tracking his PSA with at least a two decimal place uPSA test. Otherwise you will miss out on data points that can track your rate of rise. A better plot will reduce the guesswork and make it easier to time the start of SRT.

    Uncertainty lies in the right-most digit of any measurement. One doc will call you BP 182/80, a nurse might get 184/82. No big deal. But if you have only one digit in a test result, well... do the math.

    Djin
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    7-05-13 TURP for BPH (90→30 g) path neg. for PCa, then 6-mo. checks
    6-06-17 Nodule on R + PSA rise on finasteride: 3.6→4.3
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    LabCorp uPSA: 0.010 (3 mo.)0.015 (1 yr. 6 mo.)0.015 (2 yr. 4 mo.)

     
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    Old 02-08-2020, 06:16 PM   #5
    IceStationZebra
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    Re: Salvage radiation question?

    Quote:
    Originally Posted by DjinTonic View Post
    IMO anyone seriously concerned with a BCR encounter requiring salvage treatment should be tracking his PSA with at least a two decimal place uPSA test. Otherwise you will miss out on data point that can track your rate of rise. A better plot will reduce the guesswork and make it easier to time the start of SRT.

    Uncertainty lies in the right-most digit of any analytical test. If you have only one digit, well... do the math.

    Djin
    Well that's where the doc and I disagree. He says he expects me to never exceed .1. I just don't think he knows who he is dealing with.

    At my next appointment he will either do the uPSA or I will have to go doctor shopping again. This surgeon is of no particular use to me any more since we cannot operate again. So if he will not do the uPSA I will switch again. His specialty is surgery and he did a great job but I don't think he is very good with the monitoring phase.

    I called to ask about having my RP slides sent to Hopkins for a second opinion and the doc told me to call the hospital. The hospital told me to have Hopkins send the request. Hopkins expects the doctor to send the request, so I'm stuck. I'm not 100% anything would change if more aggressive cancer was found on a second opinion. No one has a clear opinion on whether to ask. I'll have to bug the doctor again to have it requested.

    You guys might be going--yeah right-- but I'm not a difficult patient. It seems like I come here and get informed on best practices (like uPSA) and can't find doctors who will do these best practices. I feel like the doctor thinks I'm telling him how to do his job. I don't really understand when a doctor has a patient wanting and needing the comfort of three decimals, what does it hurt the doc to request that test instead of a standard PSA.

    I've already proven him wrong on it being prostate confined (he used his experience and my PSA to assume there is no way it escaped). I would think that positive margin would be enough to warrant the extra scrutiny of the uPSA especially if it makes me happier.

    I thought "okay if you won't do it I'll get the primary care doc to do it" but they defer to him. I could pay for it out of pocket to have the data but what use is it if the doctor doesn't use the data at that level? If he isn't concerned about using a standard PSA is he just going to disregard the uPSA results and (potential) growth provided it is less than .1. He seems like he is just unconcerned until it reaches a level >.1. I say that not having the data points takes away critical information.

    Let's say I do PSA tests every 3 months and have the following results (in order): .015 , .019 , .024 , .028, .033, .045 , .049 , .055 the standard psa would all show <.1 the entire time except for the last one. But a clear problem would be masked and eliminate two years of opportunity.

    Ugggh

     
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    Old 02-09-2020, 04:29 AM   #6
    Prostatefree
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    Re: Salvage radiation question?

    First, you don't need three decimal points. Two decimal points will do.

    Testing frequently with the one decimal test is a waste.

    The request is simple. You want a two decimal test. Quest has a two decimal post RP test. In explanation to your doctor, the single decimal test is for screening for cancer. The two decimal test is for post RP testing. Your age is what calls for the extra scrutiny, imo.

    The second opinion on the pathology was a suggestion only if you insist on renewing testosterone supplementation after your RP.

     
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    Old 02-09-2020, 05:59 AM   #7
    IceStationZebra
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    Re: Salvage radiation question?

    Quote:
    Originally Posted by Prostatefree View Post
    First, you don't need three decimal points. Two decimal points will do.

    Testing frequently with the one decimal test is a waste.

    The request is simple. You want a two decimal test. Quest has a two decimal post RP test. In explanation to your doctor, the single decimal test is for screening for cancer. The two decimal test is for post RP testing. Your age is what calls for the extra scrutiny, imo.

    The second opinion on the pathology was a suggestion only if you insist on renewing testosterone supplementation after your RP.
    I would say age and the small positive margin justify it. 3mm in ISZ land is 3 miles! 😁 I asked before the last test and he was just dismissive like nah one decimal will do.

    I am very frustrated with this doc but like I said. It may take a village. The first practice of clowns--and they were clowns--had to find the cancer , this expert to get the surgery done and a different doctor to do the post surgical maintenance.

    Maybe I can find an expert a little closer to home. The surgeon is an hour and three days away.

     
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    Old 02-09-2020, 06:20 AM   #8
    Prostatefree
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    Re: Salvage radiation question?

    School him.

    Keep it simply and direct. Face to face.

    "I understand your view. However, I am insisting on a post RP PSA test not the standard screening test."

    Don't try to explain or apologize.

    If he dismisses and starts to move raise your hand, "Excuse me. Your not listening to me."

    Insert a point of relatedness remark.

    "I appreciate your confidence and its important to me as my surgeon, but I intend to move forward cautiously. I've invested the last two years in detecting and treating my cancer. I found you to do what you do. I'm not dropping the ball now. I want post RP PSA testing and a single decimal test is not that."

    Interesting story. My surgeon didn't do my post RP testing at first. I continued to use my GPs lab because I appreciated him so much. Without knowing or asking the test came back with two decimals <0.02. All's good and I'm ignorant of my good fortune. Then they changed their post RP testing to a <0.06. By this time I'm knowledgeable and didn't like losing the 0.04 delta of heads up. I now knew the advantages of early detection post RP. The GP's office couldn't do the test with their new equipment. Nor did they have to since they were a GP office and not a specialist. None of their patients needed post RP testing.

    I went back to the surgeon and he ordered the test via Quest. He said you don't need it. I said I appreciated his confidence, but.... I got the test. It's reassuring because its the appropriate level of testing for my profile.

     
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    Old 02-09-2020, 05:14 PM   #9
    coupe35
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    Re: Salvage radiation question?

    I've been following you post since before you operation. I guess because your name is easy to remember. You were very nervous before and after operation and who wouldn't be. It's easy for me to say but what about just sitting back and relax and see what any future PSA test tell. It's odd how before being diagnose with cancer the PSA test is, oh yeah you have a 4 and oh yeah it went to 5, no big deal, PSA's do that, they jump around. But once the prostate is gone, we worry ourselves over a fraction of a point, anyway good luck.

     
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    Old 02-09-2020, 05:32 PM   #10
    DjinTonic
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    Re: Salvage radiation question?

    Quote:
    Originally Posted by coupe35 View Post
    I've been following you post since before you operation. I guess because your name is easy to remember. You were very nervous before and after operation and who wouldn't be. It's easy for me to say but what about just sitting back and relax and see what any future PSA test tell. It's odd how before being diagnose with cancer the PSA test is, oh yeah you have a 4 and oh yeah it went to 5, no big deal, PSA's do that, they jump around. But once the prostate is gone, we worry ourselves over a fraction of a point, anyway good luck.
    PSA levels when you have a prostate can increase for a number of reason, PCa included. This makes it a very useful but imprecise tool for diagnosing different conditions

    PSA after surgery is a highly precise indicator of remaining/growing benign and malignant postate cells. Understanding this difference is fundamental for deciding on post-op investigation and treatment. (PSA dynamics after radiation are very different because the irradiated prostate continues to produce PSA for some time.)

    Dijin
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    69 yr at Dx, BPH x 20 yr, 9 (!) neg. Bx, PCA3-
    7-05-13 TURP for BPH (90→30 g) path neg. for PCa, then 6-mo. checks
    6-06-17 Nodule on R + PSA rise on finasteride: 3.6→4.3
    6-28-17 Bx #10: 2/14 cores: G10 (5+5) 50% RB, G9 (4+5) 3% RLM
    Nodule negative for PCa. Bone scan, CTs, X-rays: neg.
    8-7-17 Open RP, neg. frozen sections, Duke Regional Hosp.
    SM EPE BNI LVI SVI LNI(5L, 11R): negative, PNI+, nerves spared
    pT2c pN0 pMX, G9 (4+5) 5% of prostate (4.5x5x4 cm, 64 g)
    Dry; ED OK with sildenafil
    11-10-17 Decipher 0.37 Low Risk; 5-yr met risk 2.4%, 10-yr PCa mortality 3.3%
    LabCorp uPSA: 0.010 (3 mo.)0.015 (1 yr. 6 mo.)0.015 (2 yr. 4 mo.)

     
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    Old 02-09-2020, 05:51 PM   #11
    IceStationZebra
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    Re: Salvage radiation question?

    Quote:
    Originally Posted by DjinTonic View Post
    PSA levels when you have a prostate can increase for a number of reason, PCa included. This makes it a very useful but imprecise tool for diagnosing different conditions

    PSA after surgery is a highly precise indicator of remaining/growing benign and malignant postate cells. Understanding this difference is fundamental for deciding on post-op investigation and treatment. (PSA dynamics after radiation are very different because the irradiated prostate continues to produce PSA for some time.)

    Dijin
    Right and my understanding that the sooner that you start salvage radiation the better when the trend is upwards.

    If it goes up a few hundred thousandths and then goes back down who cares? But if the trend is consistent rising I'd rather know that one or two years earlier before it gets to .1 or .2 .

    It just doesn't make sense why the doctor cares. If the patient doesn't care use PSA. If the patient cares use uPSA.

     
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    Old 02-09-2020, 06:05 PM   #12
    IceStationZebra
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    Re: Salvage radiation question?

    Quote:
    Originally Posted by coupe35 View Post
    I've been following you post since before you operation. I guess because your name is easy to remember. You were very nervous before and after operation and who wouldn't be. It's easy for me to say but what about just sitting back and relax and see what any future PSA test tell. It's odd how before being diagnose with cancer the PSA test is, oh yeah you have a 4 and oh yeah it went to 5, no big deal, PSA's do that, they jump around. But once the prostate is gone, we worry ourselves over a fraction of a point, anyway good luck.
    I'm actually pretty chill right now. In fact, today is 2 months to the day of my surgery.

    As DJIN said and I've mentioned above those fractions really matter after surgery. They can be used for both trending (a consistent trend up is signs of bcr) but also it gives you a starting point. As the patient I would be a lot happier with a .012 than I would with a .054 as my starting point.

    Maybe I'm obsessing over nothing. I understand that the Mayo clinic only uses one decimal. But the bottom line is that I am the patient and as long as my desires aren't harmful to the treatment plan, I should get my way...even if it is illogical.

    For me I have three things that dictate the need: 1) age -- at 48 years old at surgery, I have a longer time horizon for bcr, 2) my small 3mm positive margin and its location--right lateral base and 3) my desire/need to restart testosterone. That tells me we need as much precision as possible.

    I think the doc is confident we got it all and I'll never have a detectable psa again. But he was also positive that we were doing surgery in time for it to be prostate confined.

    When my PSA goes above .1, we are starting blind. We don't know if it was rising consistently over time (indicating bcr) or if my baseline after surgery was just under .1 and the psa is just moving up/down as PSA tests normally do.

     
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    Old 02-09-2020, 06:22 PM   #13
    coupe35
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    Re: Salvage radiation question?

    Yes, I was reading your threads post surgery and it sounded like that 2 weeks with the catheter felt like 2 months and you could not wait to get it out. It would just be a damn bumper if after going through that, you would have to do radiation anyway, which I think by having surgery, that was what you were trying to avoid. But we have to play the hand we are dealt.

     
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    Old 02-09-2020, 09:07 PM   #14
    Southsider170
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    Re: Salvage radiation question?

    Quote:
    Originally Posted by IceStationZebra View Post
    Right and my understanding that the sooner that you start salvage radiation the better when the trend is upwards.

    If it goes up a few hundred thousandths and then goes back down who cares? But if the trend is consistent rising I'd rather know that one or two years earlier before it gets to .1 or .2 .

    It just doesn't make sense why the doctor cares. If the patient doesn't care use PSA. If the patient cares use uPSA.

    The purpose of the repeated PSA tests past surgery is to signal to the patient and doctor as to when followup therapy is going to be recommended and performed.

    If the patient has a less risky case and the doctor isn't going to recommend salvage radiation or something else until PSA reaches 0.1, there really is no point to an ultra sensitive test.

     
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    Old 02-10-2020, 07:58 AM   #15
    DaveinMaryland
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    Re: Salvage radiation question?

    With my pathology my RO didn't want to treat until it hit .2 on single digit. He didn't want to over treat. .2 on a single digit would be at least .15 on a 2 digit.

    My PCP did 2 digit so I had both. Once my PSA became detectable (.1 at 1 year post surgery) the next tests at 3 month intervals were .06 & .1, .07 & .1, .10 & .1.

    He wanted to see a definite rise before starting treatment. .06 to .07 was not necessarily a rise as the range of error for the test was .02. When it went to .10, that showed a rise. He left it up to me whether I wanted to go ahead now or wait until .2. He said it wouldn't make a difference in outcome. I figured the .2 would happen in 6 months so why wait.
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