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    Old 06-06-2022, 05:42 PM   #1
    mhammes
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    PSA increased to .072

    Hello all,

    Well I just got back my 3 month uPSA result and my number has increased from .056 in February to .072. This is now the 5th increase since January 2021, from .03 to .072 (see signature.) I have gotten a lot of great advice on this forum, and wanted to check in again to provide this update and to get opinions on the following:

    1) I clearly am heading towards radiation +/- ADT. Met my RO today (Johns Hopkins) who is suggesting we wait for one more round of testing and then start treatment if there is another increase, and especially if it hits .1. I have seen studies that have indicated that salvage radiation is best to have before .5, but I can't seem to get a clear read on whether there is a different in outcomes before that point. Do I go ahead and "carpet bomb" the prostate bed or wait until there is a better chance something will show on a scan. I understand I'm still early for anything to show up on a PSMA scan, but am concerned that the longer I wait the more chance of metastisis.

    2) What are the likely side effects of radiation for someone of my age (57) who had surgery 5 years ago, has regained sexual function and has a occasional leak but has largely avoided incontinence? I understand that there is a 50% change of losing sexual function and a possibility of some incontinence.

    3) what are the likely side effects of ADT (6 month course) and are they reversible after treatment is stopped?

    Thanks for any thoughts you have on the above, or other advice. Also, while I'm in a good area for medical treatment, would value any recommendations on cancer centers that are known for their work in this area where I may get additional opinions.

    Thanks.
    __________________
    Born: 1965 PSA: 6.5 at 10/16
    Biopsy 2/17 Gleason 3+4
    Radical Prostatectomy 5/17, prostate biopsied at Gleason 3+4, no positive margins, no spread to seminal vesicles
    PSA readings 5/17-1/21 undetectable to .01
    1/21 PSA = .03
    7/21 PSA = .045
    11/21 PSA = .049
    2/22 PSA = .056
    5/22 PSA = .072
    Decipher result 1/22 = .72

     
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    Old 06-07-2022, 03:45 AM   #2
    Prostatefree
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    Re: PSA increased to .072

    You have a good institution supporting you and are on a good path forward. Continue to follow their protocols/ recommendations.

    The ADT will be the most challenging with the harshest short term side effects of all three treatment modes. Exercise is highly recommended to blunt it's effects. If it's one and done you should recover. Use of ADT with radiation is very highly recommended impacting both what can be reached with radiation and what may not be.

    Radiation side effects are similar to surgery with short term recovery, but long term risk of returning. It will compound the sides effects of previous treatments.

    Look to your post RP pathology for the potential hot spots where more radiation may be directed. Your rectum is the most vulnerable both short and long term. What was your highest Gleason score and where was it? Were there adverse conditions? It is helpful to have your complete signature in front of you now including your PSA history pretreatment.

    Your long time to BCR is your best prognosis.

    Has an MO been suggested to be added to your team?

    Genetic testing of your prostate cancer tissue is something to ask about to assess the risk of metastasis while you wait. At the same time, they will do a second opinion on the Gleason scoring.

    PS: I see you had the Decipher test.

    PPS: Do you have a PSA history prior to the one 4 months before your biopsy?

    PPPS: Did you use testosterone or testosterone supplements prior to your diagnosis?

    PPPPS: Do you have a family history of PC?

     
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    Old 06-07-2022, 07:16 AM   #3
    mhammes
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    Re: PSA increased to .072

    Thanks for this response, and I am grateful that I have access to great care in this area. Appreciate your comments on the side effects - I gather there are now drugs to help regain testosterone after ADT. I am concerned about the radiation side effects but no way to avoid that as a next step, just a question of when.
    __________________
    Born: 1965 PSA: 6.5 at 10/16
    Biopsy 2/17 Gleason 3+4
    Radical Prostatectomy 5/17, prostate biopsied at Gleason 3+4, no positive margins, no spread to seminal vesicles
    PSA readings 5/17-1/21 undetectable to .01
    1/21 PSA = .03
    7/21 PSA = .045
    11/21 PSA = .049
    2/22 PSA = .056
    5/22 PSA = .072
    Decipher result 1/22 = .72

     
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    Old 06-07-2022, 03:05 PM   #4
    IADT3since2000
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    Re: PSA increased to .072

    Quote:
    Originally Posted by mhammes View Post
    Thanks for this response, and I am grateful that I have access to great care in this area. Appreciate your comments on the side effects - I gather there are now drugs to help regain testosterone after ADT. I am concerned about the radiation side effects but no way to avoid that as a next step, just a question of when.
    Hi again mhammes,

    It's unfortunate that you have to ante up dues again with this disease, but many of us have to do that, of course, and you have a great chance to defeat the disease!

    I am no longer on ADT, unless you count the Avodart/dutasteride, and have not been since 2014, but I was on intermittent ADT for more than 80 months from late 1999 through the spring of 2014. I have learned a lot about ADT and its side effects. The short and sweet message is that you should recover testosterone, at least partially, within a few months of when the ADT "runs out" (e.g., three months for a three month shot, so several months beyond that), and should fully recover within a year. If you use the new oral ADT pills, you will likely to recover even more rapidly. Your age helps: younger men recover more rapidly and completely as contrasted with men who are around 70 and older. I doubt you will need any medication to aid recovery of testosterone, but it's up to you whether to use the usual ED drugs to recover from what should be a fairly moderate impact on erectile function.

    The length of the course of ADT makes a big difference in the tactics for dealing with side effects. As mentioned already, exercise - both strength and aerobic, is wise, though a short term of ADT of 4 to 6 months should not have a great impact. You will probably have a better outcome if you also attend to other side effects of ADT, though bone density protection is probably not needed if the course does not exceed six months. I would be happy to answer questions about specific side effects, but the best way to learn is to get a copy of Wassersug, Robinson and Walker's book Androgen Deprivation Therapy, 2nd edition, which is outstanding on countermeasure tactics.

    I hope to post more in reply soon.

    Good luck!

    ….Jim

    - - - - - - - - - - - - - - - - - - - - - - - --
    22 years as a survivor. Doing well. Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA, for some reason based on a less sensitive test on 7/20/2021 was <0.05, still apparently cured in my ninth year since radiation (PSA as of 12/2/2020 was <0.01). (T 93 as of 12/2/2020.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs. Barely noticeable side effects from radiation; continuing low T, likely do to long use of ADT, but good energy and adequate strength. I have a lot of School of Hard Knocks knowledge, and have followed research, which has made me an empowered and savvy patient, but I have had no enrolled medical education. I have also had 225 undergraduate classroom hours just in statistics and experimental design, plus more in graduate school, which dwarfs what most doctors have, and that has made my “hard knocks” experience more meaningful. What I experienced is not a guarantee for all but shows what is possible.

     
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    Old 06-08-2022, 04:47 PM   #5
    mhammes
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    Re: PSA increased to .072

    Many thanks Jim, very helpful to hear about your experience. I'm resigned to the fact that I will need to go through this eventually and appreciate hearing others experience.
    __________________
    Born: 1965 PSA: 6.5 at 10/16
    Biopsy 2/17 Gleason 3+4
    Radical Prostatectomy 5/17, prostate biopsied at Gleason 3+4, no positive margins, no spread to seminal vesicles
    PSA readings 5/17-1/21 undetectable to .01
    1/21 PSA = .03
    7/21 PSA = .045
    11/21 PSA = .049
    2/22 PSA = .056
    5/22 PSA = .072
    Decipher result 1/22 = .72

     
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    Old 06-09-2022, 12:11 PM   #6
    IADT3since2000
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    Re: PSA increased to .072

    Hi again mhammes. I'm adding some thoughts on a couple of other issues you raised. You wrote in part:

    Quote:
    Originally Posted by mhammes View Post
    Hello all,

    Well I just got back my 3 month uPSA result and my number has increased from .056 in February to .072. This is now the 5th increase since January 2021, from .03 to .072 (see signature.) I have gotten a lot of great advice on this forum, and wanted to check in again to provide this update and to get opinions on the following:

    1) I clearly am heading towards radiation +/- ADT. Met my RO today (Johns Hopkins) who is suggesting we wait for one more round of testing and then start treatment if there is another increase, and especially if it hits .1. I have seen studies that have indicated that salvage radiation is best to have before .5, but I can't seem to get a clear read on whether there is a different in outcomes before that point. Do I go ahead and "carpet bomb" the prostate bed or wait until there is a better chance something will show on a scan. I understand I'm still early for anything to show up on a PSMA scan, but am concerned that the longer I wait the more chance of metastisis.
    Personally, I like your doctor's thinking, though as so often in medical matters there is some uncertainty and a sound basis for differences in opinions. My impression, having listened to talks by experts on this issue - at what point to you go for early treatment versus waiting until imaging is likely to spot locations of recurrence - is that this is very much a judgment call at this point. On the one hand, we now know, thanks to imaging research pioneered by Dr. Eugene Kwon's team at the Mayo Clinic in Minnesota, that a very substantial proportion of recurrences noticed at an early point are located within the pelvis where they can be cured by salvage radiation plus, probably, a short course of supportive ADT. (The drug metformin in support may also increase the likelihood of cure.)

    Johns Hopkins has a wonderfully large and decades-long database of very detailed case data for prostate cancer patients, especially for surgery, analyzed and interpreted though many research studies, and that institution is blessed by many world-class researchers who contribute from the basic science through translation-to-clinical-practice aspects of the research spectrum. I believe their doctors who treat prostate cancer continue to meet and share thoughts. Johns Hopkins also was a leader in multiparametric MRI imaging, and I suspect in other imaging. This is a long way of saying that your medical team there is probably very well informed and expert.

    Here's the "other hand." If you were to wait until advanced imaging could detect the location(s) of any metastasis, you would probably still be catching the cancer at a fairly early stage, and "spot" surgery or radiation might be able to wipe out just the spots, without "carpet bombing" the entire pelvis, though that "carpet bombing" approach, perhaps with a very few metastatic distant spot treatments, might also be the choice based on imaging. You would be spared the side-effects of what would probably be whole-pelvic salvage radiation and a likely short course of ADT. On the downside, the extra months of waiting could allow the cancer to spread and perhaps multiply to the point that it is no longer "oligometastatic" (meaning just a few mets - five or fewer and better if no more than three, the fewer the better) and no longer amenable to spot treatment. My layman's hunch is that that is unlikely, and that either approach - treating soon if the upward trend continues, or waiting for imaging, is a reasonable approach. But if it were me I would probably go with what the Hopkins team is recommending.


    Quote:
    Originally Posted by mhammes View Post
    ...Thanks for any thoughts you have on the above, or other advice. Also, while I'm in a good area for medical treatment, would value any recommendations on cancer centers that are known for their work in this area where I may get additional opinions.

    Thanks.
    There are a number of centers that are working/researching this issue. Dr. Kwon and his Mayo Clinic team comes right to mind, but UCLA and Memorial Sloan Kettering Cancer Center in NYC would be on most lists as best in class. (I can almost hear MD Anderson in Houston and some other centers screaming "We're on that list too! As a layman who no longer attends conferences of researchers, there may be much broader expertise that is not familiar to me. Searching PubMed could uncover more convenient expert resources.)

    Leading medical oncologists who specialize in prostate cancer could also help in choosing the most promising path, though they tend to be expensive and not that well covered by insurance if in private practice, more affordable if affiliated with a university. Two that come to mind are Dr. Mark Scholz at Marina del Rey near LAX, author of "The Key to Prostate Cancer", "The Prostate Cancer Snatchers", and numerous online articles, and Dr. Nick Vogelzang in Las Vegas. ("Expensive" means around $2,000 - $3,000 or so. I had several consultations for strategic input from one such now-retired expert, and I consider it the best investment I ever made.) Medical oncologist Drs. Tanya Dorff (Duarte, CA, near LA), and Celestia Higano, Seattle, also come to mind. Radiation-oncologist Mack Roach, III, at UCSF, would also be a helpful consult; he has long experience as a pioneer in modern radiation with imaging and ADT and is amazingly insightful.

    The really good news is that great advances in assessing recurrences and treating them have given us options, and you will benefit from that. Good luck finding your course!

    Jim

    Last edited by IADT3since2000; 06-09-2022 at 01:56 PM. Reason: Added Drs. Dorff and Higano.

     
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    Old 06-10-2022, 01:30 PM   #7
    IADT3since2000
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    Re: PSA increased to .072

    Here's one more thought about the sweet spot PSA-wise for getting salvage radiation:

    Quote:
    Originally Posted by mhammes View Post
    ... I have seen studies that have indicated that salvage radiation is best to have before .5, but I can't seem to get a clear read on whether there is a different in outcomes before that point....
    Yes, there's a substantial difference in success against recurrence, with earlier therapy being better, at least according to research with patients treated in an earlier era, not based on 2022 technology.

    Here's what Dr. Scholz's book "The Key to Prostate Cancer" says about this in the chapter on radiation for recurrent prostate cancer that is not yet detectably metastatic, Chapter 32 (written by Dr. Christopher Ross), specifically in the section "Salvage Radiotherapy" on page 258:"The odds for staying in remission were much better when the radiation was started before the PSA rose above 0.5. Success using salvage radiation is clearly tied to starting treatment at a lower level of PSA." The large study referenced for that statement is "
    Postoperative radiotherapy after radical prostatectomy for high-risk prostate cancer: long-term results of a randomised controlled trial (EORTC trial 22911)", published in 2012.
    with an abstract available free online at https://pubmed.ncbi.nlm.nih.gov/23084481/ .. The abstract is not very helpful, but contains some key facts.

    My main point is about the date of publication: 2012. A long-term study published in 2012 clearly must have involved patients treated with salvage radiation many years earlier. The abstract states that median follow-up after treatment was 10.6 years, so 10 years 7 months. That means that half the patients were treated more than 10 and a half years before final data for the study were collected, which was probably in 2011 or earlier, so treatment for at least half the patients was in 2011 minus ten years or 2001. This was a period prior to modern radiation. Doses were lower, at 60 Gy*, partly, probably, because they did not know that higher doses would be better, but also perhaps because they could not safely deliver higher doses - not avoid substantially damage to other tissues such as the rectum and bladder, due to limits in radiation delivery and imaging technology in that earlier era.

    Now, in 2022, according to the NCCN (National Comprehensive Cancer Network Guidelines 4.2022, dosing for salvage radiation should be 64 to 72 Gy**, which is substantially higher and without doubt more effective. The Guidelines also state that "biopsy proven" gross recurrence may require higher dosing. Indeed, the treatment was 60 Gy delivered just to the prostate bed.in that 2012 study, whereas today I'm thinking a lower dose to the entire pelvis would often also be given, an approach that is now safe due to improved radiation aiming, delivery and imaging technology.

    Now "The Key" was probably written in 2017 and the experts writing chapters would have been aware of the latest research. But it is now five years later, and progress in prostate cancer continues at a rapid pace. It is plausible that in 2022 that same type of study with ten year follow-up (impossible without a time machine), but with modern radiation including a whole-pelvic dose and ADT, possibly also with a course of metformin, would have results for patients with PSAs of .5 to 1.0 that would be as good or nearly as good as for patients treated the same way but with a PSA of .5 or lower. Of course it might turn out that both early and later with modern therapy would do better but that early therapy would still be in the lead. While that is unknowable at this time, there may be some good clues based on recent research. Having the radiation when the PSA is between .5 and 1.0 would enable some of those wonderful scans to do their thing.

    Jim

     
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    Old 06-11-2022, 01:48 AM   #8
    Prostatefree
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    Re: PSA increased to .072

    Early detection early treatment is the mantra for treatable cancers.

     
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    Old 06-12-2022, 08:57 AM   #9
    mhammes
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    Re: PSA increased to .072

    Hi Jim, these two posts are incredibly helpful and many many thanks for sharing this information. I am planning to use the next 3-4 months to do further information gathering, including trying to connect with some of the excellent resources you note. I also want to get as much information as I can on the short and long term side effects related to both radiation and ADT as my RO has recommended 6 month ADT. In the end, I suspect I will go with early treatment both because that seems to be the safest known option, and because I know myself in terms of the anxiety associated with waiting. I am indeed lucky to be able to access Hopkins and other expertise in the area, but plan to branch out and get advise from others; the investment as you note would seem to have a high return. Really appreciate the detailed responses - exactly the type of info I was looking for.
    __________________
    Born: 1965 PSA: 6.5 at 10/16
    Biopsy 2/17 Gleason 3+4
    Radical Prostatectomy 5/17, prostate biopsied at Gleason 3+4, no positive margins, no spread to seminal vesicles
    PSA readings 5/17-1/21 undetectable to .01
    1/21 PSA = .03
    7/21 PSA = .045
    11/21 PSA = .049
    2/22 PSA = .056
    5/22 PSA = .072
    Decipher result 1/22 = .72

     
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    Old 06-14-2022, 06:20 PM   #10
    music4ever
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    Re: PSA increased to .072

    Quote:
    Originally Posted by IADT3since2000 View Post
    Having the radiation when the PSA is between .5 and 1.0 would enable some of those wonderful scans to do their thing.
    Jim
    Yes this is the modern day dilemma at this point in the game. Should salvage radiation candidates with PSA below 0.5 delay treatment and let the cancer spread more so that they can get a PSMA pet or other modern day scan so they have a better chance of seeing exactly where the cancer is?

    I vote no, don’t wait that long because even if you see something light up on the scan there still could be microscopic cancer spreading while you’re waiting around that doesn’t show up on the scan. Treat the entire prostate bed ASAP once you see PSA consistently rising makes the most logical sense to me IMO.
    __________________
    1/2021 - 53 y/o Dx Prostate cancer Gleason 7 (3+4) over 6 cores on right side. Prolaris report "Unfavorable Intermediate" risk - PSA 3.9. 2019-PSA 3.51, 2017-PSA 2.55
    3/2021 - Radical Prostatectomy (robotic).
    3/2021 - Post-op pathology provided – pT3a pN0 MX, Stayed Gleason 7 but moved up to 4(70%) + 3. Small positive focal margin on right side. EPE. Decipher genomic test (.97) suggests "high risk" prostate cancer.
    4/2021 - PSA 0.08, 6/21 - PSA 0.06, 9/21 - PSA 0.09 - 6 month follow-up, 10/21 - PSA 0.07, 12/21 - PSA 0.11, 2/22 - PSA 0.15
    3/2022 - Salvage Radiation IMRT (20 fractions) @U of MI, 3 month Lupron shot.
    6/2022 - 2nd 3 month Lupron shot (total of 6 months)

     
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    Old 06-16-2022, 09:55 AM   #11
    IADT3since2000
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    Re: PSA increased to .072

    Side Effects after Modern Salvage Radiation?

    Hi again mhammes and others following this discussion.

    Just as modern salvage radiation, imaging, and other supportive therapy such as ADT have increased effectiveness of salvage radiation against cancer, as described earlier on this thread, it is reasonable to think that modern radiation will also have decreased side effects, though we don't have proof at present. Even going beyond the prostate bed for salvage radiation, such as with whole pelvic radiation, modern radiation is able to better avoid hitting areas that we would like to avoid getting radiation, such as the bladder and rectum. That should make the desirable higher doses of salvage radiation now being delivered to be less likely to cause budensome side effects. (That said, it is still also reasonable to think that modern salvage radiation will still have more of a side effect burden than modern radiation as the sole therapy, without prior surgery.)

    At this point, there does not seem to be research that proves this improvement. That's because modern radiation and its supportive technologies have only come into their own in recent years, and there hasn't been enough time to have research done with sufficiently long follow-up to give us confidence about long-term effects.

    Time will tell.

    ….Jim

    - - - - - - - - - - - - - - - - - - - - - - - --
    22 years as a survivor. Doing well. Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA, for some reason based on a less sensitive test on 7/20/2021 was <0.05, still apparently cured in my ninth year since radiation (PSA as of 12/2/2020 was <0.01). (T 93 as of 12/2/2020.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs. Barely noticeable side effects from radiation; continuing low T, likely do to long use of ADT, but good energy and adequate strength. I have a lot of School of Hard Knocks knowledge, and have followed research, which has made me an empowered and savvy patient, but I have had no enrolled medical education. I have also had 225 undergraduate classroom hours just in statistics and experimental design, plus more in graduate school, which dwarfs what most doctors have, and that has made my “hard knocks” experience more meaningful. What I experienced is not a guarantee for all but shows what is possible.

     
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    Old 06-17-2022, 06:57 AM   #12
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    Re: PSA increased to .072

    Dr Kwon was mentioned above - I found his three part presentation interesting:

    https://www.*******.com/watch?v=81iAzYV39Gw
    https://www.*******.com/watch?v=Q2joD360_pI
    https://www.*******.com/watch?v=IEToOBuca1Q&t=1s

    those are "you tube" links above
    __________________
    PSA at 4.2 10/2019
    Diagnosed PCa 11/21/2019 small volume 3+3 thus AS

    2021 - PSA 4.72
    3TmpMRI then fusion biopsy
    3+4 in a 7mm lesion , 3+4 nearby, and 3+3 on other side.

    Started SBRT 6/2/2021

     
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    Old 06-17-2022, 06:33 PM   #13
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    Re: PSA increased to .072

    If you wait you risk wasting the only chance for a cure. If you treat, you may be treating an area with no cancer. Chicken and egg.

     
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    Old 07-22-2022, 01:13 PM   #14
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    Re: PSA increased to .072

    I found myself in a quite similar situation. I had surgery in October 2017. PSA went to <0.01 and stayed there for some months before rising to .02 and after more months, up to 0.05. Clearly, it is starting to rise.

    My folks at MD Anderson wanted me to have Proton Therapy -- two years following surgery, with a PSA of 0.05. I was a 4+3 Gleason with seminal vesicle inclusion, negative margins, and no other spreading. (But my Urologist doc, John Ward, said, "I spend a lot of time talking people OUT of surgery, but I need to talk you IN to surgery. You've got the real McCoy." He did a great job and gave me the feeling that he was confident, skilled, and ready.

    So now, two years later, ole PSA is on the rise. I could never understand what they would "target" with the Proton radiation. There is no cancer to shoot at! Shouldn't we wait until we can see the whites of their eyes before we go to war? Plus... I had regained sexy time and didn't leak! Life was good!

    I decided to be safe rather than sorry so I agreed to the two-month Proton treatment. Shortly after that I started leaking and lost sexy time. Not only the sexy time ability, but I now have zero sex desire or libido. Plus I have to wear a pad every day for moderate leakage.

    So after doing all of that... everything they wanted me to do... my PSA is now at 0.11, and the MO says... "don't worry." Dude... we are clearly in a trend rising to 0.11 in 24 months looks like something going on to me!

    I really want to be proactive and not wait for the rain to get heavy before I buy my umbrella.

    I'm thinking about going to 1-2 other joints to get different opinions. MD Anderson is fantastic, but I think at any large facility a person can easily get "lost in the shuffle." I feel that is happening to me now at MDA as I have seen several docs, but none of them seem to be my "advocate."

    You have a tough choice to make. Even though I have had less than desired results I'm five years post-surgery and still kicking. I think I would do it the same way again... no Proton and things may have been worse.... who knows?

     
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    Old 07-24-2022, 10:26 AM   #15
    mhammes
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    Join Date: Jan 2021
    Location: BETHESDA
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    mhammes HB User
    Re: PSA increased to .072

    Thanks Mike, appreciated hearing your situation. When you say proton therapy, I assume you mean IMRT radiation, correct? Sorry to hear that you've had some side effects - hopefully they will get better over time. I likewise worry quite a bit about that - I've done pretty well post surgery in terms of incontinence (just a little stress incontinence and I wear light pad just for security) and "sexy time" has come back. Difficult decisions we face with this crazy disease. I am seeing an RO at Sloan Kettering tomorrow up in NYC to get another opinion, and plan to reach out to others recommended here, if nothing else to get as informed as I can be before pulling the trigger. Likely to go ahead with recommended IMRT this Fall if numbers go up again (most recent reading was .078) but your message is a good reminder of the possible side effects.
    __________________
    Born: 1965 PSA: 6.5 at 10/16
    Biopsy 2/17 Gleason 3+4
    Radical Prostatectomy 5/17, prostate biopsied at Gleason 3+4, no positive margins, no spread to seminal vesicles
    PSA readings 5/17-1/21 undetectable to .01
    1/21 PSA = .03
    7/21 PSA = .045
    11/21 PSA = .049
    2/22 PSA = .056
    5/22 PSA = .072
    Decipher result 1/22 = .72

     
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