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  • Now off AS, studying to choose a treatment

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    Old 04-27-2021, 01:02 PM   #16
    duckinator
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    Re: Now off AS, studying to choose a treatment

    DjinTonic: Yes I agree about questioning the 36.25 Gy. I asked him during the meeting if he used 40Gy but he said something about staying lower due to me already have some BPH issue. We got off on something else and I did not ask if it would be my choice if we went to 40Gy. (maybe he wouldn’t/couldn’t do it) here is a good blog on dosage: https://www.prostatecancer.news/2019/01/sbrt-optimal-dose.html

    Terry G: Do you know what margins you were treated with? I am guessing with a 4-5mm margin the RO said he used the erectile nerves are getting hit. Anyone know how many millimeters the nerves are away from the prostate capsule?

    Prostatefree: Certainly, there is not agreement on radiation vs surgery especially on health boards. We all need to evaluate our own position and priorities and balance that with overall statistics. This is probably one of the more difficult decisions I have ever made. There is some recent data suggesting SBRT has a 91% success rate for my risk group, but the ROs and UR I have seen thus far have stated nationally RT and RP have about the same 85% cure rate (for favorable intermediate risk)

    My current position is I am close to selecting SBRT but am in the process of setting up a telehealth “2nd opinion” with a larger university system about 3 hours away. It implies there would be a UR and RO on the call. Hopefully get to talk with one of their SBRT experts. I know the system is also doing the Retzius sparing RP if I was interested in that.
    __________________
    PSA at 4.2 10/2019
    Diagnosed PCa 11/21/2019 small volume 3+3 thus AS
    PSA at 3.9 4/2020
    PSA at 4.4 6/2020
    PSA at 4.9 11/2020
    PSA at 4.7 1/2021

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

    DOB 1961 --> 59 years old. taking Flomax and sometimes 10-20 mg vitamin V

     
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    Old 04-27-2021, 01:59 PM   #17
    Terry G
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    Re: Now off AS, studying to choose a treatment

    Duck... I do not know the specific margins that were used around my erectile nerves. I do know they used a variety of strengths in and near the prostate to avoid some structures and hit others areas harder. Once I put my faith in the radiation team the details become less important. I was under the care of a very knowledgeable team and quite comfortable. It’s my understanding that erectile nerve tissue is far less sensitive to damage from radiation than they are to mechanical damage that’s likely to occur during surgery. I was able to see a ‘picture’ of one cross section of my radiation plan that impressed me of the complexity that goes in the making that plan.

    The actual treatments were uneventful and once on the table the delivery of the radiation was two Willy Nelson songs. They gave me head phones once I was lined up and asked me what kind of music I liked. Piece of cake. We traveled about three hours each way from Pittsburgh to Cleveland.
    __________________
    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, 0.6, 0.8

     
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    Old 04-29-2021, 10:50 AM   #18
    ASAdvocate
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    Re: Now off AS, studying to choose a treatment

    Quote:
    Originally Posted by Prostatefree View Post
    Are all boards reflecting the same view, radiation is superior to surgery with no long term side effects and better statistics on recurrence?
    I participate in many prostate cancer support groups and forums (yes, I do have a "real" life and get out with friends almost every night

    The RP/RT bias is apparent on almost every forum. On (social media), there are different groups where you cannot promote surgery/ or radiation. That's how polarized things can get. I have noticed more advocates for SBRT, protons, and TULSA-PRO in the last year. There are also many men who report satisfaction with their surgery.

    Part of the disputes appear to be between people who cite impressive studies about non-surgical treatments, and surgery advocates, who state their own experiences. Those viewpoints are not comparable. More recent studies on the recurrence rates of RP, involving thousands of men across many institutions would be helpful in allowing better data-driven discussions.
    __________________
    In Active Surveillance program at Johns Hopkins since July 2009.

    Seven biopsies from 2009 to 2021. Three were were positive with 5% Gleason(3+3) found.

     
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    Old 04-29-2021, 12:13 PM   #19
    DjinTonic
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    Re: Now off AS, studying to choose a treatment

    Even the PCF's latest treatment guide,

    https://res.cloudinary.com/pcf/image/upload/v1619116431/PCF_PatientGuide_Digital_2021_1_cbkrtb.p df

    Remove the space after the p in pdf -- I don't know why the editor is adding it.

    has both surgery and RT as options for every risk group for which they advocate treatment (see p.34 in the Guide).

    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.)...0.020 (3 yr. 7 mo.)

     
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    Old 04-29-2021, 01:05 PM   #20
    ASAdvocate
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    Re: Now off AS, studying to choose a treatment

    Quote:
    Originally Posted by DjinTonic View Post
    Even the PCF's latest treatment guide,

    https://res.cloudinary.com/pcf/image/upload/v1619116431/PCF_PatientGuide_Digital_2021_1_cbkrtb.p df

    Remove the space after the p in pdf -- I don't know why the editor is adding it.

    An excellent patient resource, DJin. Thanks.

    has both surgery and RT as options for every risk group for which they advocate treatment (see p.34 in the Guide).

    Djin

     
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    Old 04-29-2021, 02:35 PM   #21
    Steve135
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    Re: Now off AS, studying to choose a treatment

    Duck, Good luck with which ever you decide. Your really a young guy and your choice here with predetermind your treatments for the rest of your life.
    I did RP at 56 with PSA 2.4 G 4+3 and PCa came back twice thus far! But having a RP allowed for Salvage RAD. which cleared that spot seemingly for good. Only for it to pop up in my bone which SBRT cleared up. I'm now confortable saying after 2 years of PSA of 0.014 I doing good.
    Shoot that thing with radiation from the start and your left with only ADT and more radiation. They almost never go in and remove it after its been cooked!
    SBRT kicked my butt 3 months after having it, and I have still not recovered all my strenght. The three day event was for my iliac bone.
    My wife and I understood going in knew sex was not going to ever happen again, nor did she care. But she still has me 6 years later.
    Note: SBRT wasn't an option at time of my RP only offered in a select few places.

     
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    Old 04-30-2021, 11:45 AM   #22
    Terry G
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    Re: Now off AS, studying to choose a treatment

    @Steve. Sorry to hear surgery as a mono-therapy didn’t result in a cure. Chances are the surgeon missed some of the cancer or micro metastasis had already started prior to surgery. It’s a misconception that removing the prostate always removes the cancer in a nice little bundle. We all wish that were true but simply not the case. Approximately 25% of intermediate risk surgery guys do need follow-up radiation. With radiation as a monotherapy it’s possible to radiate the area around the prostate with success rates exceeding 90%. Some urologists will tell you that once you’re prostate has been radiated that surgical removal is very difficult. Although that’s true; once you have surgical removal it’s highly unlikely that more surgery will be done so followup treatment when necessary is essentially the same.

    My recovery from SBRT had very few and only short term side effects and that’s typical for most guys having radiation to the prostate. In your situation it sounds like the prostate cancer had metastasized to your iliac bone and SBRT was used to radiate and kill the cancer there. A very different situation that has probably effected the bone. My hope is that with all you’ve gone through it has resulted in a cure. Wishing you a speedy recovery without additional treatments.
    __________________
    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, 0.6, 0.8

     
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    Old 05-01-2021, 02:59 AM   #23
    Steve135
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    Re: Now off AS, studying to choose a treatment

    "@Terry G Sorry to hear surgery as a mono-therapy didn’t result in a cure."

    My PCa was determined to have been in that location of the bone years before I found out I had PCa in the first place, as is many times the case.
    PCa is a very strange cancer not affecting anyone the same way.
    I'd like to think I'm on my way to being cured long enought to die from something else!

     
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    Old 05-11-2021, 03:37 PM   #24
    duckinator
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    Re: Now off AS, studying to choose a treatment

    Thought I would update my thread with my status. I decided to go with SBRT radiation. I had the fiducials and spaceoar installed this afternoon by a UR. Only slight discomfort, I don't expect to pick up the prescription for hydrocodone. He recommended staying off a hard surface lawnmower seat and avoid heavy lifting for a week.

    My RO waits a week for things to "settle down" before I go in for CT and MRI planning scans. He will then develop his treatment for the for 5 every other day visits.

    Looking forward to declining PSA levels and intend to look into some of the methods to attempt to stave off ED
    __________________
    PSA at 4.2 10/2019
    Diagnosed PCa 11/21/2019 small volume 3+3 thus AS
    PSA at 3.9 4/2020
    PSA at 4.4 6/2020
    PSA at 4.9 11/2020
    PSA at 4.7 1/2021

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

    DOB 1961 --> 59 years old. taking Flomax and sometimes 10-20 mg vitamin V

     
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    Old 05-11-2021, 06:21 PM   #25
    IADT3since2000
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    Re: Now off AS, studying to choose a treatment

    It looks like you have an excellent program and great prospects for success!

    Good luck!

    ….Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    21 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 remarkably low and stable at <0.01; apparently cured (Current PSA as of 12/2/2020). (Current T 93 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. What I experienced is not a guarantee for all but shows what is possible.

     
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