It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Cancer: Prostate Message Board

  • Now off AS, studying to choose a treatment

  • Post New Thread   Reply Reply
    Thread Tools Search this Thread
    Old 04-05-2021, 07:07 PM   #1
    duckinator
    Junior Member
    (male)
     
    Join Date: Oct 2020
    Location: MO
    Posts: 18
    duckinator HB User
    Now off AS, studying to choose a treatment

    After being on AS for over a year, latest results show its time to choose a treatment.

    Had a 3TmpMRI which found a 7mm lesion near the base, then fusion biopsy. Local pathology report had 3+3 and 3+4 in a couple cores, then 4+3 in the lesion. 2nd opinion report done by Dr Epstein took the 4+3 down to 3+4. So a small bit of a relief, but I have decided I want to treat the whole gland - dropping AS and really doubtful on focal therapy. I want a high chance of success on a long term cure. PSA is 4.7 with a low velocity.

    With a 62cc gland per the MRI I do have some issues with BPH which Flomax helps but does not fully fix. Do any of the radiation treatments eventually (months+) reduce flow issues from BPH?
    __________________
    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

     
    Reply With Quote
    The following user gives a hug of support to duckinator:
    IADT3since2000 (04-06-2021)
    Sponsors Lightbulb
       
    Old 04-06-2021, 09:59 AM   #2
    Prostatefree
    Veteran
    (male)
     
    Join Date: Dec 2019
    Posts: 425
    Prostatefree HB UserProstatefree HB UserProstatefree HB UserProstatefree HB UserProstatefree HB UserProstatefree HB UserProstatefree HB UserProstatefree HB UserProstatefree HB User
    Re: Now off AS, studying to choose a treatment

    Be aware that aggressive cancer at the base is a path used for the cancer to advance up the seminal vesicles and out. The base is actually what lay people would assume to be the top. Keep this is mind in choosing treatment methods to insure the seminal vesicles can be reached and treated if not removed by an RP.

     
    Reply With Quote
    Old 04-06-2021, 09:59 AM   #3
    Terry G
    Senior Member
    (male)
     
    Join Date: Dec 2019
    Location: Butler PA
    Posts: 123
    Terry G HB UserTerry G HB UserTerry G HB UserTerry G HB UserTerry G HB UserTerry G HB UserTerry G HB User
    Re: Now off AS, studying to choose a treatment

    Duck...Normally I have no problem recommending RT for most guys. However, I’m not sure about those with BPH. If the BPH is causing significant problems possibly surgery is a help. It’s my understanding that the RT causes the prostate to reduce in size. It’s still there but mostly ‘dried up’ and toasted. I can say for myself my urinary function was good prior to treatment and I believe almost four years later to be even better. I rarely get up at night unless I’ve enjoyed too much coffee before going to bed. Another rap I sometimes hear regarding RT that side effects can come later. I’m almost four years post treatment and at age 74 sex is still good without pills. The only side effect is reduced ejaculate.

    I would recommend seeking out the opinion of a radiation team that specializes in PCa regarding the BPH. I have no regrets about choosing SBRT. The data I looked at suggests it’s a very effective treatment with very low long term side effects for low and intermediate risks guys. Six easy treatments vs. 40-45 is hard to beat.
    __________________
    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

     
    Reply With Quote
    Old 04-06-2021, 04:15 PM   #4
    duckinator
    Junior Member
    (male)
     
    Join Date: Oct 2020
    Location: MO
    Posts: 18
    duckinator HB User
    Re: Now off AS, studying to choose a treatment

    Thank you for the input guys.

    My BPH issues aren't too bad now, but was hoping to put a (+) in the column for a radiation treatment.

    The RO I visited with (has treated 1,400 PCa patients) is suggesting IMRT/IGRT for 5 weeks then a seed boost. That does seem to have the highest overall average for being progression free on the charts at www.prostatecancerfree.org Both he and the UR suggest either radiation or surgery. They are in a "closed" medical system and don't advertise for patients.

    The UR went through all the possible treatments too. He has done 1,200 RALPs with DaVinci. He offered a referral to a higher volume surgeon (2,000) if I wanted. What should a good surgeon be able to claim on incontinence and impotence rates?
    __________________
    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

     
    Reply With Quote
    Old 04-06-2021, 05:53 PM   #5
    Terry G
    Senior Member
    (male)
     
    Join Date: Dec 2019
    Location: Butler PA
    Posts: 123
    Terry G HB UserTerry G HB UserTerry G HB UserTerry G HB UserTerry G HB UserTerry G HB UserTerry G HB User
    Re: Now off AS, studying to choose a treatment

    I like and use the site you mentioned and although it has value you have to be careful that some of the data is a little dated. It does give you an idea of success rates for various treatments. I’ll let others speak to incontinence and impotence rates; however, when I looked into it I found the definition of each created a lot of bias. For instance some definitions accepted one or two pads a day and similarly counted on pills or having enough of an erection for penetration. I’m only a data point of one; but, can say that my urinary function almost four years post treatment is the same or better and the same for my sexual function.

    For you guys BPH is an issue I didn’t face. I’ve not found any comments or data regarding if BPH can develop post RT and it is an interesting area that possibly someone better informed might comment on. You’re asking good questions and seeking out the best is always a good practice. Since we live a few hours away from Cleveland we’ve been able to use virtual visits for all of our followup. Possibly you can use the virtual system for consult at any number of centers of excellence to get the very best and current information. Terry
    __________________
    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

     
    Reply With Quote
    Old 04-07-2021, 01:06 PM   #6
    IADT3since2000
    Senior Veteran
    (male)
     
    Join Date: Nov 2007
    Location: Annandale, VA, USA
    Posts: 2,875
    IADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB User
    Re: Now off AS, studying to choose a treatment

    Hi duckinator,

    In working toward a decision on therapy you asked:

    Quote:
    Originally Posted by duckinator View Post
    ... What should a good surgeon be able to claim on incontinence and impotence rates?
    Some good points have already been made. I'll give some perspective based on research and suggest some leads.

    Sweden has done a lot of excellent research on prostate cancer, and a recent Swedish study published this year gives some idea of the range of incontinence after RP. Here's the link: https://pubmed.ncbi.nlm.nih.gov/33743059/ . It was a large study of 2,650 patients treated with either robotic (1,845 men) or open (805 men) prostatectomy between 2008 and 2011, so quite recent. The key finding, for you, is that urinary continence recovery, defined as use of less than 1 pad per day, was achieved by the two year point after surgery by 66.1% of open surgery patients and 60.5 percent of robotic surgery patients. That means that somewhat more than a third of these patients were not continent by the two year point, though they may have been so at an earlier point after surgery. There were seven centers contributing patients for each type of surgery, so it's likely that some got expert surgeons and some got less expert surgeons.

    When I was making my own early treatment decisions back around 2000, surgeons were claiming and publishing great rates of success in achieving continence for their patients. However, men in support groups and online forums were suspicious that the claims were not true. It turned out that the reality was that much of the surgery community considered continence achieved if the patient had to use only one or two pads a day. Since then that earlier bias has been corrected in published research, at least to some extent. To me, the Swedish standard of less than one pad a day looks reasonable.

    An early version of this trial, available at https://pubmed.ncbi.nlm.nih.gov/25770484/ including a link to a free copy of the entire paper as well as the abstract, reported results at 12 months as well as results for sexual function. It is interesting that the rates of urinary incontinence actually were somewhat higher at the two year point than at the one year point.

    This 2017 study from Japan provided results in the general range suggested by the Swedish studies.

    There are more studies, but these give a sense of the range of experience and odds.

    Urinary continence for radiation patients is extremely good in the long term. Personally, now at the 8 year point since radiation (78 Gy in 39 sessions that included a 46 Gy - 23 sessions dose to the pelvis), I am doing perfectly fine: no urinary incontinence at all due to the radiation, and no rectal incontinence either, though I make several trips to the bathroom daily instead of just one, which I believe is due to the radiation.

    There is an excellent discussion of urinary, GI, and sexual side effect issues in chapters 11 through 14 of "The Key to Prostate Cancer", by Dr. Mark Scholz, MD, and 29 others: Chapter 11, Introduction to Treatment-Related Side Effects by Dr. Scholz; Chapter 12, Sexual Dysfunction, by Drs. Kelly Chiles, MD, and John Mulhall, MD; Chapter 13, Surgical Side Effects Affecting Urination, by Dr. Gary Leach, MD (note that some of the statistics he provides are for the subset of men who came to him because they had problems and thus are not typical for the whole population of surgery veterans); and Chapter 14, Side Effects from Radiation Therapy, by Henry Yampolsky, MD.

    My own take from personal experience, contacts, and studying research is that a substantial minority of patients who have had surgery experience some long-term side effects affecting quality of lifeh, but also that most such patients will find effective ways of coping with these bothersome effects so that the impact on quality of life is small and quite tolerable, and that the odds of long-term side effects for patients having modern radiation are extraordinarily low, but not zero, also with treatments available to decrease impact.

    I hope this helps.

    ….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.

     
    Reply With Quote
    Old 04-07-2021, 01:24 PM   #7
    DjinTonic
    Veteran
    (male)
     
    Join Date: Dec 2019
    Location: NC
    Posts: 463
    DjinTonic HB UserDjinTonic HB UserDjinTonic HB UserDjinTonic HB UserDjinTonic HB UserDjinTonic HB UserDjinTonic HB UserDjinTonic HB UserDjinTonic HB UserDjinTonic HB UserDjinTonic HB User
    Re: Now off AS, studying to choose a treatment

    For men opting for surgery, what counts isn't really overall statistics, but rather the stats of your surgeon, and, more specifically, his or her stats for men with your PCa status. It makes to compare outcomes for, say, a G8 or 9 fellow with many positive biopsy cores to a G 6 guy with just a few positive cores. When interviewing surgeons always ask about their stats for oncological, urinary, and potency outcomes for men with your PCa status

    You choice of a highly experienced surgeon is the single most important factor when going the surgery route.

    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.)

     
    Reply With Quote
    Old 04-26-2021, 12:37 PM   #8
    duckinator
    Junior Member
    (male)
     
    Join Date: Oct 2020
    Location: MO
    Posts: 18
    duckinator HB User
    Re: Now off AS, studying to choose a treatment

    After much reading and another RO visit, I am leaning heavily toward SBRT with the Cyberknife. 5 fractions at 7.25 Gy each using fiducials and SpaceOAR. He has done 250 of these procedures in the 5 years with 2 occurrences thus far - is that sufficient experience?

    I've been told I am in the favorable intermediate risk category due to Dr Epstein rating my lesion at 3+4, rather than the local pathologist saying 4+3. Would a supplement of 4 months of ADT be worth the aggravation? RO didn't think so but if I wanted they extra insurance they would do it.
    __________________
    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

     
    Reply With Quote
    The following user gives a hug of support to duckinator:
    IADT3since2000 (04-30-2021)
    Old 04-26-2021, 02:30 PM   #9
    DjinTonic
    Veteran
    (male)
     
    Join Date: Dec 2019
    Location: NC
    Posts: 463
    DjinTonic HB UserDjinTonic HB UserDjinTonic HB UserDjinTonic HB UserDjinTonic HB UserDjinTonic HB UserDjinTonic HB UserDjinTonic HB UserDjinTonic HB UserDjinTonic HB UserDjinTonic HB User
    Re: Now off AS, studying to choose a treatment

    Quote:
    Originally Posted by duckinator View Post
    After much reading and another RO visit, I am leaning heavily toward SBRT with the Cyberknife. 5 fractions at 7.25 Gy each using fiducials and SpaceOAR. He has done 250 of these procedures in the 5 years with 2 occurrences thus far - is that sufficient experience?

    I've been told I am in the favorable intermediate risk category due to Dr Epstein rating my lesion at 3+4, rather than the local pathologist saying 4+3. Would a supplement of 4 months of ADT be worth the aggravation? RO didn't think so but if I wanted they extra insurance they would do it.
    If your choice is SBRT, I would make certain your RO has seen this study from MSK about insufficient total dosages with SBRT.

    Higher SBRT Dose Levels for Localized Prostate Cancer Are Associated with Improved Post-treatment Biopsy Outcomes

    https://www.redjournal.org/article/S0360-3016(20)31895-2/fulltext

    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
    Decipher 0.37 (Low Risk), uPSA: 0.010 (3 mo.)...0.020 (3 yr. 7 mo.)

     
    Reply With Quote
    Old 04-26-2021, 07:48 PM   #10
    Terry G
    Senior Member
    (male)
     
    Join Date: Dec 2019
    Location: Butler PA
    Posts: 123
    Terry G HB UserTerry G HB UserTerry G HB UserTerry G HB UserTerry G HB UserTerry G HB UserTerry G HB User
    Re: Now off AS, studying to choose a treatment

    Duck, I’m an SBRT Post Toastie with great results so it’s difficult to find fault with the choice you’re considering. If you’re comfortable with the RO and team you’re considering 250 experiences sounds reasonable. How they received their training might be a factor as well. Djin’s comment maybe worth asking about. At the time I was treated 37.5 Gy was the standard of care. There maybe some more recent data that slightly moves up the dose rate without compromising side effects especially since SpaceOAR is becoming more common. You want enough radiation to kill the cancer without damage to the other stuff. Since I have no training in radiation I can’t comment on any difference between Cyberknife verses the Varian equipment I was treated with and that might play a roll in dose rate.

    As my wife and I made the same journey you’re on a few years ago I recall sitting down with the team at CCI asking a lot of questions probably with the same concerns you have. Near the end of the visit I looked over at my wife and seeing her nod knew we were both comfortable and had reached our decision. I think it’s important to be comfortable with the RO and team you select. Keep us posted since 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.
    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

     
    Reply With Quote
    Old 04-27-2021, 05:25 AM   #11
    Prostatefree
    Veteran
    (male)
     
    Join Date: Dec 2019
    Posts: 425
    Prostatefree HB UserProstatefree HB UserProstatefree HB UserProstatefree HB UserProstatefree HB UserProstatefree HB UserProstatefree HB UserProstatefree HB UserProstatefree HB User
    Re: Now off AS, studying to choose a treatment

    Are all boards reflecting the same view, radiation is superior to surgery with no long term side effects and better statistics on recurrence?

     
    Reply With Quote
    Old 04-27-2021, 07:35 AM   #12
    Terry G
    Senior Member
    (male)
     
    Join Date: Dec 2019
    Location: Butler PA
    Posts: 123
    Terry G HB UserTerry G HB UserTerry G HB UserTerry G HB UserTerry G HB UserTerry G HB UserTerry G HB User
    Re: Now off AS, studying to choose a treatment

    I believe the data suggests that radiation is superior to surgery for most prostate cancer. The exception might be those guys who have PCa and suffer terribly from BPH. If prostate cancer was diagnosed by radiation doctors I believe we would have far fewer prostatectomies. I also feel radiation techniques are progressing at a much faster pace than surgery. We want our urologists to have thousands of surgeries before it’s our turn but someone has to be first in line. I admit my bias and I’m only a data point of one.
    __________________
    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

     
    Reply With Quote
    Old 04-27-2021, 08:12 AM   #13
    IADT3since2000
    Senior Veteran
    (male)
     
    Join Date: Nov 2007
    Location: Annandale, VA, USA
    Posts: 2,875
    IADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB User
    Re: Now off AS, studying to choose a treatment

    Hi Prostatefree. I'm replying to your question/comment below:

    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 can't answer for all boards, indeed I can't answer for more than a few boards on which I have participated, sometimes briefly before being kicked off: kicked off a board that strongly opposed any surgery because I was considered too pro-surgery, kicked off a board that was heavily pro-surgery because I was considered too open to other options, and kicked off one board because I opposed quack approaches including the "Budwig diet" approach featuring cottage cheese and flaxseed oil (dangerous for us prostate cancer patients, not so the ground seed) as a supposed cure for cancer.

    That said, I don't agree with the premise of your question. There is a lively discussion of the merits of surgery and radiation on this board, and I don't see any claim or even a strong consensus that radiation is superior in all circumstances. Personally, I am convinced evidence shows that radiation and surgery are about equally effective for favorable intermediate risk cancer, that surgery is preferable for some patients even at higher risk levels because of personal circumstances (such as chronic urinary tract trouble, great inconvenience in going to a good radiation facility), and that radiation is substantially superior in effectiveness, but not overwhelmingly superior, for higher-risk cancers, with surgery being a riskier but reasonable option, hopefully with the patient understanding that odds are he will recur and need radiation, probably with ADT, later, but that is not at all a certainty.

    As for side effects, anyone who claims there are never any long-term side effects from radiation is nuts. That is conclusively refuted by evidence. However, evidence also shows, to me convincingly, that the risk and severity of substantial, bothersome long-term side effects are much lower with modern radiation and supportive technologies than with surgery. Still, the side effect profile is different, and personal preference/risk tolerance play a role.

    That's my take.

    ….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.

     
    Reply With Quote
    The Following User Says Thank You to IADT3since2000 For This Useful Post:
    Terry G (04-27-2021)
    Old 04-27-2021, 09:52 AM   #14
    Gary I
    Member
    (male)
     
    Join Date: Dec 2019
    Location: SoFL
    Posts: 98
    Gary I HB UserGary I HB UserGary I HB User
    Re: Now off AS, studying to choose a treatment

    Quote:
    Originally Posted by IADT3since2000 View Post

    I don't see any claim or even a strong consensus that radiation is superior in all circumstances. Personally, I am convinced evidence shows that radiation and surgery are about equally effective for favorable intermediate risk cancer, that surgery is preferable for some patients even at higher risk levels because of personal circumstances (such as chronic urinary tract trouble, great inconvenience in going to a good radiation facility). AGREE

    As for side effects, anyone who claims there are never any long-term side effects from radiation is nuts. That is conclusively refuted by evidence. STRONGLY AGREE

    However, evidence also shows, to me convincingly, that the risk and severity of substantial, bothersome long-term side effects are much lower with modern radiation and supportive technologies than with surgery. DISAGREE, based on my experiences

    Still, the side effect profile is different, and personal preference/risk tolerance play a role. AGREE, again. Side effects differ dramatically, on a case-by-case basis.
    __________________
    3T MRI 5/16
    MRI fusion guided biopsy 6/16
    14 cores; four G 3+3, one G3+4,
    Second 3T MRI 1/17
    RALP 7/17, G3+4, Organ confined
    pT2 pNO pMn/a Grade Group 2
    PSA 0.32 to .54 over next 4 months
    DCFPyl PET & ercMRI @NCI - 11/17
    One inch tumor still in prostate bed
    To view links or images in signatures your post count must be 10 or greater. You currently have 0 posts.

    SRT, 2ADT, IMGT 70.2 Gy, complete 5/18
    PSA 0.066 1/20, .059 6/20, .077 9/20, .099 11/20,.075 1/21 .079 4/21

     
    Reply With Quote
    Old 04-27-2021, 12:20 PM   #15
    IADT3since2000
    Senior Veteran
    (male)
     
    Join Date: Nov 2007
    Location: Annandale, VA, USA
    Posts: 2,875
    IADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB User
    Re: Now off AS, studying to choose a treatment

    Hi Gary I,

    I'm replying to your comment, quoting my earlier comment first, with your reply in bold:

    "However, evidence also shows, to me convincingly, that the risk and severity of substantial, bothersome long-term side effects are much lower with modern radiation and supportive technologies than with surgery. DISAGREE, based on my experiences"

    That research I'm referring to definitely shows a very small percentage of patients, a handful out of a hundred for most of the side effects and modern radiation treatments, who do have bothersome, sometimes very burdensome and difficult long-term side effects. Apparently, unfortunately, you are in that group. My wife has been "in that group" for both statin cholesterol medications and Prolia for bone density; while those drugs are wonderful for the vast majority of patients, they can cause awful side effects for some of us, which is the case for many drugs. Fortunately, there are often alternatives. We patients and even our doctors typically do not know up front whether we will be in the vast majority who do well or in the small minority who have a miserable experience. To me, the best tool we have in making our decisions is research that gives us statistics so that we can at least know the odds we are facing.

    I hope you are finding ways to cope with the problems you have experienced.

    ….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.

    Last edited by IADT3since2000; 04-29-2021 at 11:41 AM. Reason: Deleted an inappropriate comma.

     
    Reply With Quote
    Reply Reply




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 09:39 AM.





    © 2021 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!