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    Old 11-14-2020, 09:17 AM   #1
    Thudson
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    Before I have that RP done, what do you think?

    Hi, I'm 53 years old, own a restaurant, and am fairly active. BMI 27, working on it. Fairly good shape otherwise. Pretty crappy diet over lifetime but last 2-3 years doing much better.

    Slow flow/urgency last 10 years numerous DRE over that time from GP and Urologist, only showed prostate enlarged but not unusual for age.

    Cyst on right testicle over last 10 years or so, finally grew to size that was pretty painful had it removed this Spring. Came right back and urologist took the whole epididymis the second time she went in.
    Lots of contact with urologist means she was paying attention to PSA. Slowly ramping up, hit 4 on 6/3/2020.
    Biopsy on 7/15/2020 Gleason 3+3 in left mid gland and bilateral apices

    Tissue: A) Prostate biopsy, left base. B) Prostate biopsy, left mid. C)
    Prostate biopsy, left apex. D) Prostate biopsy, right base. E) Prostate
    biopsy, right mid. F) Prostate biopsy, right apex.
    Clinical Data: PSA 4.10, ICD-10 R97.20.

    Diagnosis:
    A. Prostate, left base, needle core biopsy:
    Benign prostate tissue.

    B. Prostate, left mid, needle core biopsy:
    Adenocarcinoma, Gleason score 3+3=6 (Grade group 1), involving 1 of 4
    cores (10%).

    C. Prostate, left apex, needle core biopsy:
    Adenocarcinoma, Gleason score 3+3=6 (Grade group 1), involving 2 of 2
    cores (10%, 10%).

    D. Prostate, right base, needle core biopsy:
    Benign prostate tissue.

    E. Prostate, right mid, n
    eedle core biopsy:
    Benign prostate tissue.

    F. Prostate, right apex, needle core biopsy:
    Adenocarcinoma, Gleason score 3+3=6 (Grade group 1), involving 1 of
    2 cores (20%).

    Under impression it was mild began discussing options. Both urologist and urologic oncologist recommended RP with DaVinci, mainly because I am 53. Independent research seemed to back up that approach.

    MRI was first denied by insurance then they changed their mind. MRI on 10/27/2020

    PROCEDURE: MRI PROSTATE
    INDICATIONS: Prostate cancer staging
    COMPARISON: Lumbar spine MRI 9/3/2014
    TECHNIQUE: Multiplanar multisequence imaging was performed prior to and following contrast per routine protocol
    Specifically, diffusion weighted sequences were obtained and ADC mapping was performed
    CONTRAST 9 mL Gadavist 1 mmol/mL Contrast was administered for the evaluation of possible infectious,
    inflammatory or neoplastic process
    CLINICAL HISTORY:
    6/3/2020. PSA = 4 1 ng/mL
    Prostate biopsy 7/15/2020 with Gleason 3+3 in the left mid gland and bilateral apices

    FINDINGS:
    PROSTATE
    Prostate Measurement 53x41x51 cm
    Prostate Volume 57 6 mL
    PSA Density = 0 07 ng/mL2
    Hemorrhage None
    Penpheral Zone Heterogeneous signal

    There is abnormal T2 signal hypointensity with corresponding restricted diffusion involving the bilateral posterior
    peripheral zones from the apex to the base There is abnormal enhancement, which is earlier than or contemporaneously
    with the prostate parenchyma Findings are more pronounced on the left, particularly in the left mid gland and base
    There is no definite extraprostatic extension, but the extent of contact with the gland margin increases the likelihood of at
    least microscopic extraprostatic extension

    There is extension of heterogeneous T2 signal hypointensity into the bilateral anterior peripheral zones, but there is no
    significant restricted diffusion

    Transition Zone Heterogeneity and enlargement consistent with moderate benign prostatic hyperplasia No suspicious
    findings Right median intravesicular lobe

    NEUROVASCULAR BUNDLE Involvement is likely present in
    SEMINAL VESICLES No evidence of seminal vesicle invasion
    PELVIC LYMPH NODES No suspicious pelvic lymph nodes
    BONES No suspicious abnormality Small circumscribed sclerotic focus in the right iliac bone was presents 2014 is
    compatible with a benign bone island Degenerative changes of the lower lumbar spine Degenerative changes of the
    hips Mild fluid in the right iliopsoas bursa
    BLADDER Circumferential bladder wall thickening and trabeculation
    OTHER Bilateral hydroceles Sigmoid colonic diverticulosis

    IMPRESSION:

    1 Extensive signal abnormality with corresponding restricted diffusion and abnormal enhancement bilaterally from the -
    apex to base and involving the posterior peripheral zones Based on the biopsy results, this may represent a combination
    of neoplasm and prostatitis or unsampled neoplasm Pi-RADS 5 = Very high (clinically significant cancer highly likely)' -
    2 Moderate benign prostatic hyperplasia
    3 MRI T-stage = T2c
    4 No suspicious lymphadenopathy or bone lesions within the field of view

    More advanced cancer (T2c) made urologist more certain that RP was correct. Urologist mentioned that if neurovascular bundle is involved a possibility would be to leave a positive margin and then follow with radiation. Will talk to urologic oncologist on 11/20/2020.

    Scheduled for RP on 12/23/2020. Some financial urgency as out of pocket will reset ($7500). But would trade $7500 for ability to have erection:-)

    Everything works well and sex is a big deal for me, but so is my 14 year old son. Ironically, wife and I are in long drawn out, but amicable, process of splitting up, resentment/frustration about libido differences was a major driving factor.

    Mainly interested in experiences with physical therapy (never thought I would be considering buying a vacuum device) and experiences with pills and/or shots to have an erection (if it comes to that).

    Curious about experiences with leaving positive margin and finishing with radiation. Also curious if anyone thinks I am missing something or making a bad decision.

    Thank you,

    Andy

     
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    Old 11-14-2020, 01:04 PM   #2
    IADT3since2000
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    Re: Before I have that RP done, what do you think?

    Hi Andy and welcome to the Board!

    It appears that treatment would be wise, though an argument could be made for active surveillance. On the surface, the number of cores that are positive and their location, as well as the PI-RADS of 5, tilt the scale in my layman's eyes toward treatment. Further investigation might be warranted. Do you know if the pathologist reading the biopsy samples and the radiologist specialize in prostate cancer and are regarded as experts? If not, second opinions would be warranted. A prostate of 57.6 mL would normally generate a PSA of around 5 to 6, just based on the volume of healthy cells, so your PSA of 4.1 is on the low side, a clue that there may be minimal if any cancer (would mean that the pathologist misread the slides as 3+3=6 instead of no cancer).

    So far, you have been talking only to the surgery side of the medical community. Is that so, or have you had a chance to consult a radiation oncologist who is independent of your urologic consultations?

    Surgery would be a decent choice, but MODERN radiation, coupled with MODERN imaging to plan therapy and precisely target treatment, and, for you, a short course of ADT (androgen deprivation therapy, aka hormonal therapy), probably for just four months, could be an excellent choice. Radiation would offer cancer control at least as good as surgery and very likely with a lower profile of side effects. Your age is not a consideration in choosing between surgery and radiation, though many surgeons like to claim that it is.

    An outstanding book to help you get oriented is "The Key to Prostate Cancer," 2018, by Dr. Mark Scholz and 29 others, mostly renowned experts who write chapters in their main area of expertise.

    Good luck.

    ….Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    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 remarkably low and stable at <0.01; apparently cured (Current PSA as of 9/4/2020). (Current T 128 9/4/20.) 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.

     
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    Old 11-14-2020, 01:28 PM   #3
    DjinTonic
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    Re: Before I have that RP done, what do you think?

    Hi Andy and Welcome to the Forum. I think treatment is in the cards.

    Further to Jim's points, have you met with a radiation oncologist to discuss RT as your primary treatment instead of surgery (I had successful surgery, BTW). Even if you decide in favor of a RP, I think you owe it to yourself to investigate RT. However, if you do, be sure to ask about how RT affects BPH. I have not see studies on this (surgery does have the plus that it usually puts and end to the symptoms from BPH).

    The MRI has indicate the possibility of extension of the cancer out of the prostate capsule, which sometimes happens even with G6 (3+3) disease, making adjuvant RT a possibility after surgery. If you PCa were high-grade, I would say surgery+RT is one good option. With G6, RT as your primary treatment instead of RP+RT is also attractive. (As you probably know, a G6 biopsy does not mean that there aren't any lesions of a higher grade that were missed. This is always an unknown unless you opt for surgery and the entire prostate is examined. When you choose RT as primary treatment, the only Gleason-grade info you have is the biopsy report.

    It's complicated, because you don't know for sure that your cancer isn't prostate-confined.

    Choosing a primary treatment for PCa is often a difficult choice because there are options. Rather than a right or wrong, it is really a question of picking a treatment that you feel comfortable with. Ask and read up on the outcomes -- oncological, urinary, and potency (erections) for your status (G6 with possible extension and BPH) for RT, surgery, and surgery + RT (if needed).

    Keep us posted. I wish you only the best,

    Djin
    __________________
    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, negative 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
    Decipher 0.37 (Low Risk), uPSA: 0.010 (3 mo.)...0.013 (2 yr. 10 mo.)

     
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    Old 11-14-2020, 05:23 PM   #4
    IceStationZebra
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    Re: Before I have that RP done, what do you think?

    Welcome to the club of the gland which knows no answers.

    I'll tell you that I had similar biopsy results, all G6, and opted for surgery. While the post surgery pathology showed no worse than G6, it did show that we took it out at the last minute. We got it with a 3mm positive right margin. Had we waited another year or two or five doing AS, what would the result have been when the positive margin escaped into surrounding tissue.

    Maybe I am an exception but i really see AS as nothing more than a gamble. Others disagree with me and that is fine. But Had I continued down the AS path, it would have been to my detriment.

     
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    Old 11-15-2020, 06:37 AM   #5
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    Re: Before I have that RP done, what do you think?

    Quote:
    Originally Posted by IceStationZebra View Post
    Welcome to the club of the gland which knows no answers.

    I'll tell you that I had similar biopsy results, all G6, and opted for surgery. While the post surgery pathology showed no worse than G6, it did show that we took it out at the last minute. We got it with a 3mm positive right margin. Had we waited another year or two or five doing AS, what would the result have been when the positive margin escaped into surrounding tissue.

    Maybe I am an exception but i really see AS as nothing more than a gamble. Others disagree with me and that is fine. But Had I continued down the AS path, it would have been to my detriment.
    The AS "gamble' has pretty good odds if done properly. Fifteen year results from my program at Johns Hopkins show the mortality rate from PCa to be one-tenth of one percent. I'll take those odds.

    "I got it just before it would escape the prostate" seems to be a line that surgeons learn in med school. It is repeated SO often.

    The improved MRI and micro-ultrasound imaging that is part of a strict AS protocol should be able to discern the risk level and proximities of lesions.

    But, you have your experience and I have mine. be well.
    __________________
    In Active Surveillance program at Johns Hopkins since July 2009.

    Six biopsies from 2009 to 2019. Three were were positive with 5% Gleason(3+3) found.

     
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    Old 11-15-2020, 09:09 AM   #6
    Thudson
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    Re: Before I have that RP done, what do you think?

    Jim, Djin, Ice, AS,

    Thank you for your thoughts. This board has a nice vibe and helpful people. The pull between AS and doing something is understandable in a world where clear decisions are rare. Seems like it would make an interesting area for study, with high stakes decisions being made on incomplete information all kinds of understandable biases and emotions come into play. Exactly the kind of thing that humans have trouble with and often leads to less than optimum decisions.

    I will go over the quality of the interpretation on both the biopsy and MRI with my surgeon on Friday. Is there somewhere else I could pursue this question?

    MRI was read by Kai Kinder: https://centraloregonradiology.com/physicians/kai-kinder-m-d/

    Biopsy was read by Brad Bryan: https://www.copc.net/brad-bryan

    The choice of DaVinci RP or RT is tough but I think I am comfortable with RP. My urologist had set up a consultation with a radiologist even though she recommended the RP. All the research I found seemed to reinforce that RT was better in the short term and RP would be better for the long term for my situation. I decided not meet with the radiologist (hope this wasn't a mistake).

    Can I circle back to one question that has not been addressed? For those who have problems with sex after the procedure you chose, how happy are you with pills or shots? Did you do the physical therapy and is damage to the clitoral body avoidable? Any other advice in this arena?

    Thanks again,

    Andy

     
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    Old 11-15-2020, 02:47 PM   #7
    IADT3since2000
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    Re: Before I have that RP done, what do you think?

    Hi Andy,

    Regarding the radiologist, he has studied at leading centers (UCSF and OHSU), but it appears he is a general radiologist, which means he may not see much prostate imaging. I initiated a thread here a number of weeks ago that cover's an expert's comments addressing how we patients can at least "kick the tires" in assessing the experience of a radiologist: https://www.healthboards.com/boards/cancer-prostate/1050315-lessons-2020-pcri-conference-2-selecting-your-mri-radiologist.html . If I were you, I would check that out, then call the radiologist's office and ask the specific questions about the total and frequency of prostate cancer imaging. If suspect, I would arrange a second opinion by an expert. (I checked to see if he might have been involved in research on imaging for prostate cancer, and he is not. That's not unusual; most radiologist's are not authors/co-authors of research papers.)

    Regarding the pathologist: he has had excellent education and is no doubt a very talented guy, but one line in his brief bio raises a lot of concern for me:

    "Professional Interests:

    Breast pathology, hematopathology, gastrointestinal pathology"

    It appears he is a general pathologist who probably does not see a lot of prostate specimens. If it were me, I would get a second opinion from an expert. We had a guy in our support group whose first biopsy report indicated an aggressive, worrisome cancer; the expert second opinion downgraded the risk to mild, and our attendee went on to active surveillance instead.

    Regarding your concern about the research in support of AS, that is a very normal concern, but fortunately there is a highly encouraging answer: there has been a ton of it; it is highly encouraging; it is from many major centers; it is highly consistent; and it now has a long and convincing track record. Twenty years ago that was not at all the case; indeed, no papers on AS on the then ongoing clinical series had yet been published. You can access this body of research YOURSELF, for free, by going to www.pubmed.gov, a US government website, and searching with a string like - prostate cancer AND active surveillance . I just did that and got a list of 3,800 results. You can access each, at least an abstract, by clicking on the blue hypertext. You can add to your search string and/or apply filters to focus the search. As I mentioned earlier, I think you will be going for treatment, but it's too early to totally rule out AS at this point.

    Yes, I think it is a mistake not to consult with a radiation oncologist. It's better if you can find one who is independent of the urologist as you don't want your consult flavored by an unhealthy (for you) business relationship, which sometimes happens.

    I've run out of time but will try again.

    ….Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    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 remarkably low and stable at <0.01; apparently cured (Current PSA as of 9/4/2020). (Current T 128 9/4/20.) 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.

     
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    Old 11-15-2020, 02:54 PM   #8
    IceStationZebra
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    Re: Before I have that RP done, what do you think?

    Quote:
    Originally Posted by Thudson View Post
    Jim, Djin, Ice, AS,

    Thank you for your thoughts. This board has a nice vibe and helpful people. The pull between AS and doing something is understandable in a world where clear decisions are rare. Seems like it would make an interesting area for study, with high stakes decisions being made on incomplete information all kinds of understandable biases and emotions come into play. Exactly the kind of thing that humans have trouble with and often leads to less than optimum decisions.

    I will go over the quality of the interpretation on both the biopsy and MRI with my surgeon on Friday. Is there somewhere else I could pursue this question?

    MRI was read by Kai Kinder: https://centraloregonradiology.com/physicians/kai-kinder-m-d/

    Biopsy was read by Brad Bryan: https://www.copc.net/brad-bryan

    The choice of DaVinci RP or RT is tough but I think I am comfortable with RP. My urologist had set up a consultation with a radiologist even though she recommended the RP. All the research I found seemed to reinforce that RT was better in the short term and RP would be better for the long term for my situation. I decided not meet with the radiologist (hope this wasn't a mistake).

    Can I circle back to one question that has not been addressed? For those who have problems with sex after the procedure you chose, how happy are you with pills or shots? Did you do the physical therapy and is damage to the clitoral body avoidable? Any other advice in this arena?

    Thanks again,

    Andy
    I had mine 12/9 and had on 2/3 erection exactly 2 months to the day after surgery. I thought, "this is going to be easy".

    I've only used cialis 5mg a day and sometimes go up to 15 mg if I anticipate sex. But nothing. No further erections and I can't say at this point they will even come back. That said, I would do it again because dying from cancer is extraordinarily bad.

    I think shots are next for me.

     
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    Old 11-15-2020, 07:38 PM   #9
    Terry G
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    Re: Before I have that RP done, what do you think?

    Thudson,
    Thanks for the very through first post; it helps provide solid information about your diagnosis. Normally I’m a radiation guy and find it very easy to recommend RT for most low and intermediate risk guys. In your situation the enlarged prostate and urinary issues makes it a little more complicated. Removal of your prostate might actually not only remove the cancer but could potentially help your urinary function. That surgery also comes with the risk of making your urinary function worse as well as a risk of significantly reducing your ability to achieve normal erections.

    The latest radiation treatments most likely stand the best chance of eliminating the cancer but I’m not comfortable saying it would improve urinary function. Most guys with normal urinary function return to the same level they had prior to RT. In my case I had a normal sized prostate and good urinary function prior to treatment and urinary function today may actually be a little better. I’m certain it’s not worse.

    I can say that the five treatment plan with SBRT had very little impact on my life during treatment. No catheter, no pads, no surgery to recover from. I was able to maintain my normal active life style including sex. With surgery for the short term that’s unlikely and I would expect it to impact your business and work.

    I believe you should seek out the best radiation oncologist you can find and one who routinely treats PC to find out their opinion on the impact of RT for your particular situation. Thanks for doing your homework and I encourage you to make an informed decision that works for you. One thing for sure regarding PCa, “one size fits none”. Keep us posted as we learn from one another.
    __________________
    Rising PSA:
    11/13 1.95; 9/15 3.28; 10/16 5.94
    TRUS 1/17
    Bx: Three of twelve cores adenocarcinoma Gleason 6 (3+3) all on left side, no pni.
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    Old 11-16-2020, 01:35 PM   #10
    Prostatefree
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    Re: Before I have that RP done, what do you think?

    You are getting good care.

    The RP depends on the surgeon and the simplest measure is the number of procedures performed. I've heard 600 as the minimum. Mine had near 1,000. I've heard expert described as over 3,000. Beware of any rockstars who have more procedures than they themselves could have possibly performed.

    You can also ask the surgeon for their personal statistics on ED and recurrence. Keep in mind the expert surgeons often are called to take cases with greater risks of poorer outcomes.

    Your young age makes it a more challenging call. A question I'd ask is how did they miss the MRI result with the biopsy? Is it in an area that is a hard reach for the biopsy. Some are.

    MRI's are still an emerging use. I'd ask about experience and statistics regarding the value of their MRI. Some institutions, like JH's, have been doing it for some time and are very comfortable the results are reliable. You could wait and do a targeted biopsy and make sure you hit that spot this time.

    What I'd be looking for is a reason to choose radiation. ED is always a risk with surgery. It worked for me, but it's not a slam dunk.

    If you have been using testosterone then it boosts the risk there may be something smaller and more aggressive hanging around. Or, finasteride, imo.

    The damage to the nerves can happen in different ways. One is to simply severe it. It can not recover. Another is the heat in the surgical cavity generated by the cauterizing tool they use. Hard to predict this one depending on how vascular you are down there. Nerves can recover from some of this, but it takes a long time. Nerve tissue heals at a much slower rate than other soft tissue. I was serviceable within a year, happier at the end of two, and it continues to improve. But. not my age related libido (67). It continues to decline.
    __________________
    Born 1953; family w/PCa-grandfather, 3 brothers;
    7-12-04 PSA 1.9; 7-10-06 PSA 2.0; 8-30-07 PSA 3.2; 12-1-11 PSA 5.7; 5-16-12 PSA 4.76; 12-11-12 PSA 5.2; 3-7-16 PSA 7.2;
    3-14-16 TRUS biopsy, PCa 1%-60% across 8 of 12 samples, G3+3;
    5-4-16 DaVinci RP, Path-65g, lymph nodes, seminal vesicles, capsule, margin all neg, G3+4, T vol 35%, +pT2c, No Incontinence-6mos, Erections-14 months;
    6-30-20 PSA less than 0.02, zero club 4 yrs

     
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    Old 11-16-2020, 04:37 PM   #11
    GuyBMeredith
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    Re: Before I have that RP done, what do you think?

    Thudson,

    If you are interested in maintaining sexual function give radiation a close look. My urologist said I would be impotent post surgery, but depending on age and health that should sort out within a year or so. IF she is able to do nerve sparing surgery and IF all goes well. The alternative is radiation where I am not impotent after treatment, but might start having issues a few years down the road.

    At 74 I suspect the post surgery recovery of sexual function might be iffy and the fact the cancer is on a neurovascular bundle makes for longer odds so I decided to go with at least a few more years of guaranteed sexual function with 28 sessions of radiation and 6 months of ADT/hormone therapy. I have finished treatment and have been fully functional the entire time. Libido is about sub zero while on hormone treatment, though, so you have to set a program of practicing regular sex. It is not automatic.
    __________________
    Diagnosed at age 73 Feb 2019 DRE indicates nodule PSA 2.8 Aug 2019 PSA 3.1 Urologist suggests biopsy in Oct Results of biopsy: 2 of 12 cores positive. Low volume T2b, intermediate risk, GS 3+4, PSA 3.10, prostate cancer, perineural invasion. Followed up with MRI to help decide between surgery and IMRT. MRI shows suspicious PIRADS 5 lesion measuring 2.cm in diameter, with associated left neurovascular bundle involvement. Started 6 month lupron series Feb 2020, 28 sessions of high dose IMRT Apr 15, 2020. Sexual functions okay except ejaculate has changed. Without libido it is an academic process that requires much focus. July 27 first measure of PSA and total testosterone. PSA: .13 ng/dl Total testosterone is less than 12 ng/dl.

     
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    Old 11-17-2020, 09:29 AM   #12
    Thudson
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    Re: Before I have that RP done, what do you think?

    Thanks for all the advice. I may have given the wrong impression about AS, I am certainly not against it and would have strongly considered it if I wasn't 53. I brought it up because I am interested in how people make decisions and game theory, the AS decision seems like a perfect "petri dish" to study that kind of thing.

    My dad was a fighter pilot, one of his favorite sayings when I was learning to bike/drive/fly/fish/hunt/a million other things was "Do something, even if it is wrong." Like a lot of kids I would over analyze and under react in stressful situations.

    There is a lot of info here, I think the two main points would be:

    1. Double check everyone and everything. I will get started on that today, agree completely. There is a contradiction between the extent of the cancer on the MRI and the PSA level, will ask surgeon about this.

    2. Consider radiation. I will quiz my surgeon some more when I meet with him Friday, the last meeting we had was pre-MRI when the consensus was that the cancer was confined to the prostate. Now that is not certain. My reasons for not going with radiation are similar to not going with AS, age. With any kind of luck, I have a 20-40 more years left and it seems like the tradeoffs are worth it. Some side effects now vs. more later, more options if there is a reoccurrence, hopefully good lifestyle/ED outcomes because of age. Every choice is a gamble and an attempt at balancing competing goals it seems.

    While I won't list every piece of advice that all of you were gracious enough to provide in your posts, I will certainly consider all of it and likely act on much of it. Also thanks for the personal experience with ED.

    Thanks,

    Andy

     
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    Old 11-17-2020, 12:36 PM   #13
    IADT3since2000
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    Re: Before I have that RP done, what do you think?

    Hi again Andy,

    You are clearly giving this good thought! Here are a few reactions I had to pending issues in your latest post.

    Regarding your Dad’s advice to "Do something, even if it is wrong," you are doing something by doing “due diligence” research into the options. Also, “active surveillance” is also “doing something,” provided it is ACTIVE surveillance. (If active, it is quite safe; otherwise, it can be dangerous.)

    Regarding age and radiation or active surveillance: you need a better informed awareness of the role of age in both. Age used to be a factor with radiation, especially prior to about 2007, when the doses were often too weak, in order to avoid injuring healthy tissue, because they could not be aimed with sufficient precision; that meant less than ideal control of the cancer. Alternately, where cancer control was key, many patients had burdensome side effects. It’s a new era! Now, sufficiently strong doses are routinely given to wipe out the cancer, and they are given with very low risks to surrounding healthy tissue. Therefore, the scar tissue that often became a problem several years after radiation is now a pretty infrequent issue. That means that age is no longer an issue with radiation, though my impression is that a substantial proportion of urologists have not yet recognized that fact that is inconvenient to their sales pitch for surgery. (I was eagerly waiting for the necessary improvements in radiation and associated technologies before committing to radiation for myself, which I did in 2013, with imaging and ADT prior to that.)

    Similarly with active surveillance. In the first decade after 2000, many doctors were in favor of reserving AS for older men on the theory that other ailments would get them before prostate cancer did. At one point, 65 and older was a widely accepted age for AS. However, leaders in the field, who were running or well aware of clinical research involving large groups of AS patients, were beginning to think that it was appropriate for younger men, especially men in their 50s. Age came up in a panel discussion including some leading experts in AS at a large meeting of prostate cancer researchers in 2007. Dr. Laurence Klotz, MD, leader of the famed Toronto AS group and arguably the leading expert on AS in the world, was on the panel. As a survivor representative, from the audience I asked each panel member to give his view on the lowest age for which AS was appropriate. There were three answers echoing the ranges above, and then Dr. Klotz answered with an emphatic “any age” was appropriate – no lower threshold! You could hear a pin drop in the hall, but his view is now accepted. One supportive detail he has emphasized over the years is that about 20% of his now large and mostly long follow-up group has a PSA doubling time, which echoes the cancer doubling time, of A CENTURY OR MORE! Obviously, even a very young man who truly has that kind of disease is not going to ever have difficulty with prostate cancer throughout his life, nor are others with much shorter but still lengthy doubling times. Dr. Klotz was a presenter on AS at last September’s PCRI conference, available at PCRI.org, and he has numerous papers on AS that detail and overview AS research; you can find them at www.pubmed.gov by searching for – prostate cancer AND active surveillance AND klotz l [au] . I just did that search and got a list of 120 papers just on this topic! He is an amazing guy; he also plays on a seniors hockey team and is a really good jazz pianist.


    At the moment, AS looks like a questionable option for you, but favorable changes in interpretation of your pathology or imaging could open it up as a sound option. It should definitely not be ruled out only because you have many good years ahead of you.

    Good luck sorting all of this out!

    ….Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    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 remarkably low and stable at <0.01; apparently cured (Current PSA as of 9/4/2020). (Current T 128 9/4/20.) 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.

     
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    Old 11-17-2020, 01:28 PM   #14
    djust
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    Re: Before I have that RP done, what do you think?

    Hey Andy
    You came to the right place to discuss.
    This forum was invaluable to me when I was just getting started down this path.
    Almost as young as you and did AS for almost a year after the initial biopsy.
    After rising PSA numbers that my URO was more comfortable with than I was thanks to this forum I had to push for an MRI and after a guided biopsy.
    MRI showed quite a bit more cancer than we thought and more aggressive 3+4 on the biggest tumor which was all the way to the edge and guided biopsy backed that up.
    I am glad I didn't wait any longer to get it out, I had one tumor that I found out afterward with the path report that it ended at the burnt edge where they cauterized the removal, if I had waited much longer I feel like the outcome could have been different.
    During my year of AS I did a lot reading and researching here and a couple other forums and was dead set against surgery due to the immediate side affects.
    After my MRI I had a change of heart and wanted it out, I know it sounds crazy but I was more comfortable with the known side affects that surgery would bring than the unknown ones that could come years down the road after radiation.
    I talked to 2 surgeons and one radiologist locally in OK then went to MD Anderson in Houston and talked to a surgeon and radiologist there and made my mind up to go down there and have it removed.
    It was definitely not easy to do that so far from home but we managed.
    The side affects were on my mind 24/7 but so was the cancer. 10 days after surgery the cath came out and I was almost continent from day one. Took surgeons advice and started out on a daily sildenafil and a vacuum pump.
    Used the pump two sessions a day for 6 months and man do I hate that thing and don't know if it really helped anything or not but would do it all over again.
    Extra pills once a week to see if there was progress never really worked for me and at the 3 month post surgery mark I got a script for the shots. They worked great but never got used to the feeling they gave me or the pain that came with it. I kept thinking no pain no gain right, lol
    Good news though after about 8 months I started noticing some progress and stopped the shots. Now one year and one week into this post surgery journey I am not where I was before surgery but getting close and my sex life is almost back to where it was.
    I have no regrets having it removed and still think it was the right thing to do for me. It's gone and my PSA numbers are right where I want them to be at least for now and that's all I can ask for.
    Most of us that have the fortune to deal with this goes through an agonizing time trying to decide which treatment to choose and that process was hell for me probably like most others.
    Things in your mind will get better once you make that choice but only you can make it.
    Cures come from both paths for sure and once the decision is made you have to be ok with it no matter how it comes out, no do overs.
    Which ever path you choose just make sure they have lots and lots of experience doing what they do.

    Keep your head up you will come out of this ok and I wish you well whichever way you choose.

    One benefit now is that when the younger neighbors come down for beers instead of it taking me forever to **** I do it in half they time it takes them now.
    __________________
    2018 Age 55
    PSA 3.5 7-16 PSA 4.18 7-17 PSA 3.66 8-17 PSA 4.99 7-18
    Biopsy 8-18 Diagnosed 8-18 12 Cores 1 Core 5% positive Gleason 6
    PSA 5.3 11-18 PSA 6.01 2-19 PSA 6.73 6-19
    3T MRI 6-19 MRI Guided Fusion Biopsy 19 cores 7-18-19
    Left Mid Lat 3+4 3mm 25% Left Apex Lat 3+4 2mm 15% ROI RM TZA 3+4 17MM 27%
    PSA week before surgery 11-5-19 7.6
    RALP 11-11-2019 MD Anderson
    pT2
    First Post Surgery PSA .064 12-24-2019
    PSA every 3 months for the first year .064
    On to every 6 month checks now

     
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    Old 11-18-2020, 07:10 PM   #15
    Thudson
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    Re: Before I have that RP done, what do you think?

    I picked up "The key to Prostate Cancer." (thanks Jim) and have been busy reading. Am coming around to the idea of slowing down and double checking things. I am also coming around to at least giving RT more of a look. I was surprised that the outcomes were better for some of the combo treatments than the outcomes for RP. They seem to like the radioactive seeds quite a bit but I don't see much about that anymore.

    Here is the thing that really has me hesitating to decide, the biopsy and PSA levels show low signals, the MRI shows more concerning signals. I think the message they are trying to get across in "The key..." is that high PSA is not definitively indicative of cancer, but if you have cancer, your PSA will reflect it. In other words, if your PSA is low you won't have high grade cancer. I have a .07 NG/ML/ML PSA density and that would match the Gleason 6 that the biopsy gave me. I am starting to suspect the MRI. Seems like I need to get some confirmation.

    Confirmation seems like it could come from having an second radiology opinion from an expert in PC. Or I could have a second, directed, biopsy. Or I could have a genetic test to look for aggressive cancer as called out in "The Key...".

    I will go over all this with my surgeon on our Friday consultation.

    I also noticed in reading over my biopsy again that the samples were reviewed by a second doctor, Anna Dolezal. https://www.stcharleshealthcare.org/providers/anna-dolezal-md

    Thanks everyone for the help, personal stories, advice, and pushing me to look further.

    Andy

     
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