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    Old 07-17-2020, 09:15 PM   #1
    RPuraVida
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    Decisions

    Hello,

    First, I thank all of you in advanced for being in this space. I am grateful there is a community to discuss and show support to what is a very daunting change in a person's life. Here we go.

    I am 47, Filipino-Chinese-American. I consider myself to be active, mostly plant-based and dairy-free diet, healthy and with no other pre-existing conditions.
    PSA: 6.4 (May 13, 2020) - Surveilled biannually since 2017.
    PI-RADS: 4 (May 27, 2020)
    Gleason: 6 (3+3); 9 out 12 cores; (June 25, 2020)
    Family History: Father had Prostate Surgery (age late 60s'?)

    I was told by my doctors that because of my age with a considerable amount of years remaining in my life that there is a higher chance that the cancer will grow and because my father had prostate cancer, Active Surveillance was still a choice but not recommended. I do feel overwhelmed at having to make such a decision outside of AS at my age. Any thoughts on this?

    My other options are Robotic Prostate Surgery and EBRT.

    My main concerns are the chances and severity of permanent damage associated with either option which include urinary incontinence and ED. I understand everyone's biology is different as well as the varying diagnosis per patient (age, level of cancer, etc), so percentages of recovery may not necessarily be representative, but I still welcome any data and statistics that you can provide.

    I am seeking anyone's experience, input, and opinion with either treatment and their recovery post-treatment.

    Thank you.

     
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    Old 07-18-2020, 08:09 AM   #2
    DaveinMaryland
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    Re: Decisions

    First, sorry to hear you have to deal with this at such a young age.

    Get Patrick Walsh's book on prostate cancer Guide to Surviving Prostate Cancer.

    If you can go to a cancer center of excellence for treatment. I was fortunate to be near Johns Hopkins.

    If you opt for surgery, make sure the surgeon is well experienced with the surgery and does it regularly. They say 300+. I would say 500+ prostate surgeries. The more the better.

    There are several different radiation treatments. Find a good RO (radiation oncologist)to discuss radiation and the various options.

    Any URO surgeon or RO worth their salt will tell you that either option will give the same results vs the cancer. The decision will have to be yours.
    With surgery there will be temporary incontinence. For the vast majority of men it goes away in 3 to 6 months. The UROs Experience is what brings better results with this. I can't tell you about ED as I had it before my surgery.

    The best advice I got was from my RO. Chose the option that if all does not go well, you will not look back and wish you had done something differently. In other words, no second guessing. Make the choice you are comfortable with no matter what.
    __________________
    Dx at age 63 March 2017
    Prostate Cancer 3+4 Open RP May 2017
    PSA detectable May 2018, single digit .1 2 digit .06
    August 2018 2 digit .07
    November 2018 2 digit .10
    6 month Lupron Shot Dec 2018
    Salvage Radiation Jan - Mar 2019
    Nov 2019, June 2020 PSA undetectable

     
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    Old 07-18-2020, 12:04 PM   #3
    RPuraVida
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    Re: Decisions

    Hi DaveInMaryland,

    Thank you for your response and the book reference. I will look into it.

    I spoke with both a URO Surgeon and RO this past week both from USC Keck Medicine. The URO has experience in the thousands with the robotic procedure.

    Which procedure did you go with specifically? And did you have additional therapy afterwards? I am estimating there is always a possibility of additional treatment depending if all or some of the cancer has been removed?

    And thanks for passing that advice.
    __________________
    __________________
    PSA: 6.4 (May 2020) - Surveilled biannually since 2017.
    PI-RADS: 4 (May 2020)
    Gleason: 6 (3+3); 9 out 12 cores; (June 2020)
    Family History: Father had Prostate Surgery (age late 60s'?)

     
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    Old 07-18-2020, 01:10 PM   #4
    guitarhillbilly
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    Re: Decisions

    Make sure that you have a UR specializes in Prostate Cancer.
    Your UR should explain to you [and your spouse if applicable] the Pros and Cons of RP or EBRT and/or EBRT + ADT and the possible side effects of each.[Short Term and Long Term]
    My UR spent 30 minutes with my wife and I giving us information and answering Questions. My UR is also trained in robotic RP but never pushed me in that direction.
    My UR used data and long term survival data with my treatment options from Memorial Sloan Kettering NYC.My choices were RP OR IMRT + ADT and I chose the latter.
    Ultimately the treatment choice is yours and you should be confident in which ever one you choose.
    I wish you the very best outcome in whichever treatment you choose.
    __________________
    T2a / Gleason Score 8 / PSA at Diagnosis 6.9 /
    1-5 aggressive score : 4
    12 cores= 4 positive
    NBS = Negative
    Pelvic CT= Negative
    Pelvic MRI= Negative
    Age at Diagnosis= 60-65 age group
    Completed 42 IMRT Sessions
    Lupron scheduled for 2 years [Started DEC 2019]

     
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    Old 07-18-2020, 02:25 PM   #5
    Terry G
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    Re: Decisions

    RP, That’s probably too many positive cores for most AS programs and seeking treatment is probably best. Each treatment carries the risk of side effects and finding the best choice for you can only be determined by you. The various radiation options and surgery both offer a high cure rate for Gleason 6 guys. I’m not a fan of the simple statement that young guys have surgery and older guys radiation. You have to determine what’s best for your situation and the information found on this forum helped me with my decision.

    Normally if a guy has good urinary function without BPH and is concerned with maintaining sexual function I recommend checking out radiation options. EBRT comes in several types. I chose the SBRT form since it provided a very high success rate and had the smallest number of treatments. The downside was that it was offered at fewer places and had less of a track record. I decided it was still best for me and with only five treatments instead of forty-five treatments the travel was no problem at all. I always recommend seeking out the very best practitioner and team that you can find no matter what treatment you decide on. Good luck, keep learning and exploring your options.
    __________________
    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.
    DOB 7/21/47; good health; age 69 @ Dx
    Treated 6/17 SBRT @ Cleveland Clinic by Dr. Tendulkar
    Reduced ejaculate only side effect; everything works
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    PSA’s post.SBRT 1.1, 1.1, .9, 1.8, 2.7, 1.0, 0.3

     
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    Old 07-18-2020, 05:55 PM   #6
    DjinTonic
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    Re: Decisions

    It's almost always a good idea to have a 2nd opinion of your biopsy slides. Your doc can have them sent to Dr. J Epstein at Johns Hopkins. You want to know for certain if there was any pattern 4 present in any of the cores.

    Given your dad having had possibly clinically significant PCa, I suggest a genomics test of your cancer's RNA, e.g. OncotypeDx or Decipher. You want to have a risk estimate of your cancer progressing and becoming metastatic.

    For the same reason, I would enquire about the benefits of genetic (DNA) testing of your blood to check for the known familial mutations for serious PCa risk, e.g. BRCA 1 or 2.

    Imaging can help you and your doc check for evidence of growth of your cancer out of the prostate, such as through the capsule, as G6 can sometimes do.

    The bottom line is you want to have as much information as possible about your cancer and your current status to help you make treatment decision.

    All 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
    11-10-17 Decipher 0.37 Low Risk: 5-yr met risk: 2.4%, 10-yr PCa-specific mortality: 3.3%
    uPSA: 0.010 (3 mo.)...0.013 (2 yr. 10 mo.)

     
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    Old 07-19-2020, 05:41 AM   #7
    IADT3since2000
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    Re: Decisions

    Quote:
    Originally Posted by RPuraVida View Post
    ...I spoke with both a URO Surgeon and RO this past week both from USC Keck Medicine. The URO has experience in the thousands with the robotic procedure....
    You are apparently in one of the areas in the US with an abundance of excellent resources for prostate cancer patients - the LA area. I am in Virginia, but I'm aware there are some outstanding prostate cancer support groups in that area, such as the group in Fullerton, which I imagine is still going strong.

    Another book to help you get oriented and make choices is "The Key to Prostate Cancer" by Dr. Mark Scholz, a medical oncologist practicing in Marina del Ray, and 29 others, a number of them also from the LA area.

    I too think that you should seriously consider radiation, mainly for its advantages in post-treatment quality of life and equality in effectively treating the cancer. SBRT, mentioned earlier, has become increasingly common and widely available in just the past two or three years, and some of the leading, pioneering expertise is in the LA area. I would also be worried about pursuing active surveillance, an excellent approach for many patients, but not so useful if you have a lot of and a high percentage of positive cores backed by a PI-RADS 4 result.

    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 T 99 6/5/20.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs.

     
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    Old 07-19-2020, 03:50 PM   #8
    DaveinMaryland
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    Re: Decisions

    RP - take a look at my signature.

    I had an open RP in May 2017.
    1 year later my PSA was no longer undetectable and needed to undergo salvage radiation.
    Before getting the radiation treatment, my RO wanted to be sure my PSA was definitely rising so we checked it at 3 month intervals. After 2 more slight rises, Idecided to pull the trigger on salvage radiation.

    In December 2018 I received a 6 month Lupron shot. I went through radiation treament in February and March 2019. As withe surgery, I came through with flying cor with very little side effects. In June, 2.5 months post radiation, we took a trip to Yellowstone and did a lot of walking.

    I've been undetectable since radiation.
    __________________
    Dx at age 63 March 2017
    Prostate Cancer 3+4 Open RP May 2017
    PSA detectable May 2018, single digit .1 2 digit .06
    August 2018 2 digit .07
    November 2018 2 digit .10
    6 month Lupron Shot Dec 2018
    Salvage Radiation Jan - Mar 2019
    Nov 2019, June 2020 PSA undetectable

     
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    Old 07-19-2020, 05:56 PM   #9
    Southsider170
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    Re: Decisions

    Young guys heal a lot better from prostatectomy than do older ones, and with a relatively lower risk cancer, you have a good chance of a real good result.

    Surgery will also allow the doctors to slice and dice your prostate, and see if you have anything riskier than a Gleason 6 in there.


    By all means review your options , read up on it. If you do go for surgery, the doctors have to wait a minimum of 2 months after a biopsy.

    In the mean time, if you choose surgery, lose weight if you need to. Fat guys do worse with surgery that svelte fellows.

     
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    Old 07-19-2020, 06:10 PM   #10
    Terry G
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    Re: Decisions

    One of the reasons I visit this forum (and one other) is that I credit the information gained here as helping me make an informed treatment decision. My Urologist was ready to schedule me for RP on the same day as my sit down to discuss my biopsy results even though I was a very low volume Gleason six guy. When I look back on that day I’m so grateful for the guys who encouraged me to take my time, explore my options and make an informed decision on the treatment that was best for me and my situation. No matter what comes down the road regarding my PC I’ll know I made an informed decision and have no regrets. I’m in debt to those who walked this road before me.
    __________________
    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.
    DOB 7/21/47; good health; age 69 @ Dx
    Treated 6/17 SBRT @ Cleveland Clinic by Dr. Tendulkar
    Reduced ejaculate only side effect; everything works
    To view links or images in signatures your post count must be 10 or greater. You currently have 0 posts.

    PSA’s post.SBRT 1.1, 1.1, .9, 1.8, 2.7, 1.0, 0.3

     
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    Old 07-19-2020, 07:30 PM   #11
    DjinTonic
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    Re: Decisions

    My uro/surgeon has a minimum post-biopsy healing time of one month, which I believe is the typical minimum most or many uro's adopt. Studies have been done concluding even shorter times are OK.

    I wanted my RP done as soon as possible. That turned out to be 5 weeks because of scheduling (imaging, pre-op visit, surgery). The results were excellent.

    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
    11-10-17 Decipher 0.37 Low Risk: 5-yr met risk: 2.4%, 10-yr PCa-specific mortality: 3.3%
    uPSA: 0.010 (3 mo.)...0.013 (2 yr. 10 mo.)

     
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    Old 07-28-2020, 07:08 PM   #12
    GuyBMeredith
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    Re: Decisions

    One of my main goals was retaining sexual function. I went with 28 sessions IMRT and 6 months ADT. I have completed radiation and have a little over 1 more month ADT.

    Supposedly ADT increases impotence. My personal opinion is a study needs to be done on whether doctors should be using penile restoration during ADT to avoid impotence at the other end. I am intentionally producing at least one very firm orgasm level erection a day (no mechanical devices or ED meds) and orgasm every few days. I think I will have few side effects after lupron. Ejaculate is clear now, dunno whether that will change.

    Note: Erection and orgasm without testosterone or libido is work for me. I need to put myself in a high grade erotic fantasy and use manual stimulation when my wife is not feeling frisky. Daily sex that needs this much stimulation can be a challenge.

    I feel that for my situation the ADT and IMRT seem to have worked out quite well and would advise other men to take a close look.
    __________________
    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 07-29-2020, 05:28 AM   #13
    Prostatefree
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    Re: Decisions

    One of my main goals was curing the cancer. As a side effect, I've fully recovered.

    Early detection, early treatment. If I can avoid radiation, I will. I chose surgery with radiation and ADT as back ups should I need them.

     
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    Old 07-29-2020, 08:08 AM   #14
    GuyBMeredith
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    Re: Decisions

    The downside of going with radiation is that, per my OR, radiation cannot be used as backup. My urologist had given the same information, but from the OR it hit home.

    That gave me pause and I almost changed my mind in favor of surgery at the very last moment. However the cancer is right on a neurovascular bundle, almost guaranteeing impotence with surgery. I guess the backup option now is ADT, but I am functional now under ADT so could probably weather it.
    __________________
    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 07-29-2020, 08:38 PM   #15
    ASAdvocate
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    Re: Decisions

    Quote:
    Originally Posted by GuyBMeredith View Post
    The downside of going with radiation is that, per my OR, radiation cannot be used as backup. My urologist had given the same information, but from the OR it hit home.

    That gave me pause and I almost changed my mind in favor of surgery at the very last moment. However the cancer is right on a neurovascular bundle, almost guaranteeing impotence with surgery. I guess the backup option now is ADT, but I am functional now under ADT so could probably weather it.
    “If you do radiation first, you can’t do surgery later” is, in my opinion, a misleading talking point used by urologists to steer men into surgery.

    It is misleading because, while it is true that surgery is difficult after radiation, they don’t tell you that there are several proven, salvage treatments in the case of recurrence after primary radiation.

    These treatments include cryotherapy, both low and high dose brachytherapy, Cyberknife, proton beam therapy, High Intensity Focused Ultrasound, and Focal Laser Ablation. Also, salvage surgery is performed by some specialists.
    See the summary table attached.

    https://prostatecancerinfolink.net/2017/09/05/salvage-focal-ablation-for-radio-recurrent-prostate-cancer/

     
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