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Thread: Were your PCa treatment results what you expected?

  1. #31
    Senior User GeorgeS's Avatar
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    Quote Originally Posted by RobLee View Post
    George, I mentioned this i another thread, but I've always considered you to be the go-to guy on HT, and have referred several others to some of your posts. I am only six months into my first round of Lupron. My main problem with the HT has been the hot flashes/night sweats, moodiness/depression and mental fog. So I have been taking moderate doses of venlafaxine ("Side Effexor") and Gabapentin, which makes it tolerable. My RO had simply told me to exercise.

    Your bio mentions lymphatic invasion but no mention of bone mets (bone scan clear) and I wonder how that's going. Is there a definitive prognosis that you will be clear of this at some point? Pardon me if this is too personal.
    Rob, I take "Megrace" for the hot/cold flashes. Your DR can prescribe it. The "brain fog" comes and goes. Thankfully (or sadly depending on perspective) I've only recently started to develop mood swings. As I've mentioned before as being diagnosed as an Alcoholic (+18yrs recovery) and Major Depressive Disorder. Comically the bleak cancer prognosis had no effect on the depression.

    I'm sorry to say this but make no mistake - nobody was ever cured of PC with ADT. Stage4 is rarely if ever curable. Ever. I've been on "palliative care" since I started this journey. When the 1st line ADT fails (and it will) there are other medications and "cocktails" that I'll likely be offered. Mets to bones and organs is surely in my future. When Kaiser is able to capture an image of the spread I'll get to retire on SS-DI. (if I can stand working that long!) I'm having a difficult time continuing to work full time and have to take days off to sleep all day.

    The idea is to string together some good quality of life and treatments long enough for modern science to find a cure or pass because of something else. The Jury is still out on the odds of ether.

    (sorry if this was overly long or off topic)
    - George

    55yo at diagnosis 3/14, PSA=395, 1 week later PSA=322, 98cc prostate at biopsy: 16/16 positive, 15-G9 (4+5), 1-G6(unknown). Stage4: T3BN1M0, "Metastatic to Lymph nodes" (multiple nodes effected, bone scan clear, 12/14 DEX=normal, 12/16 DEX=normal)

    - Currently on ADT/TAB: Lupron 4mo+Cassodex
    - PSA 03/14=322
    - PSA 06/14=55.88
    - PSA 08/14=37.63
    - PSA 10/14=11.35
    - PSA 12/14=6.78
    - PSA 04/15=2.69
    - PSA 08/15=1.01
    - PSA 12/15=1.15
    - PSA 04/16=0.38
    - PSA 08/16=0.22
    - PSA 12/16=0.22
    - PSA 04/17=0.19
    - PSA 08/17=0.16

  2. #32
    Top User RobLee's Avatar
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    I'm sorry George, I didn't realize you are stage 4. Your sig states "T3BN1M0", same as me but with lymphatic invasion (and a much higher PSA). I am aware that HT cannot go on forever, that eventually the PCa becomes "castration resistant". I was just unsure of the impact that the lymphatic involvement has on one's prognosis.

    My RO prescribed megestrol (Megace) for the hot flashes, but my PCP said I should not take it, as it could form blood clots. And in my case our double cancers hit me particularly hard, so the Effexor seemed to be the logical solution for both the hot flashes and the MDD. There are side effects, but I would not want to give up the therapeutic benefits.

    Thank you for your reply, and no it's not too long.
    Me: Age 66, 62 when this started
    Oct 2012 & 2013: PSA=4, DRE negative
    Mar 2014: PSA=9, TRUS biopsy negative
    Mar 2015: PSA 12, Oct: 20, lots of Cipro
    Mar 2016: PSA 25, changed Uro

    Jun 2016: MRI fusion biopsy, tumor right base, 2 cores 100% +2x40% all G8 (4+4)
    Aug 2016: DaVinci RP (-)margins & 11 lymph nodes(-) 53g 25% involved, pT3B n0m0
    Grade group IV, 6mm extraprostatic extension w/PNI, bilateral seminal vesicle invasion
    Jan 2017: one year Lupron ADT initiated, uPSA's ~.03
    May 2017: AMS800 implanted & revised 5/15-7/21
    Aug 2017: 39 fractions RapidArc IMRT 8/14-10/6

    Mrs: Age 64, Dec 2016 Dx stage 4 NHL/DLBCL, Primary Bone Lymphoma
    spinal RT, 6X R-CHOP21+intrathecal MTX via LP. Only 1% of lymphomas are Primary Bone
    "Everyone you meet is fighting a battle you cannot see"

    Read our story at Cancer Couple Blog

  3. #33
    Senior User GeorgeS's Avatar
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    Rob,

    I really wish Chuck would make a "sticky" of more black&white information than he currently does.

    https://en.wikipedia.org/wiki/Prostate_cancer_staging

    The above link speaks to how PC is staged. I do believe that the Walsh book everyone else loves also spells out how PC is staged.

    A "rookie" mistake. No offense taken. "Every case is different" and "The devil is in the details" comes to mind.

    There are three online "risk" calculators available to us mere mortals. Plugging my numbers in (not counting the lymph nodes) results in a whole whooping %75 chance of progression after RP @ <=5yrs (using one calculator) and a stunning %6 chance for 5yr success (%94 chance of failure) on another calculator.

    Note: there indeed is a "dividing line" between organ contained and not contained. While with contained there is a chance for a cure however with non-contained all bets are off.

    Hence 3yrs ago RP/RT was deemed a waste of time and combined with the lymph nodes involvement my case became "incurable Stage4". (the current calculators still agree with this assessment)

    There are two different types of ADT: Ajunct (combined with other treatments, in your case RP&RT) and Primary (might be combined with Chemo or other chemicals/drugs).

    The former has a "curative intent" and reasonable odds for success (assumed greater than %50) and the latter is "palliative treatment" to help relieve symptoms and slow the PC down.
    Last edited by GeorgeS; 06-14-2017 at 03:15 PM.
    - George

    55yo at diagnosis 3/14, PSA=395, 1 week later PSA=322, 98cc prostate at biopsy: 16/16 positive, 15-G9 (4+5), 1-G6(unknown). Stage4: T3BN1M0, "Metastatic to Lymph nodes" (multiple nodes effected, bone scan clear, 12/14 DEX=normal, 12/16 DEX=normal)

    - Currently on ADT/TAB: Lupron 4mo+Cassodex
    - PSA 03/14=322
    - PSA 06/14=55.88
    - PSA 08/14=37.63
    - PSA 10/14=11.35
    - PSA 12/14=6.78
    - PSA 04/15=2.69
    - PSA 08/15=1.01
    - PSA 12/15=1.15
    - PSA 04/16=0.38
    - PSA 08/16=0.22
    - PSA 12/16=0.22
    - PSA 04/17=0.19
    - PSA 08/17=0.16

  4. #34
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    Quote Originally Posted by RobLee View Post
    Not on you life! I know of whom you speak, and I just tend to grin and bear it.
    I wasn't so much trying to shoot down anyone in the RT crowd (heck, my father was a radiation oncologist) but instead trying to affirm making the "right choice" for those of us who underwent RP. I even have a close friend who had RT with zero issues, and fortunately he is NOT one of those "told you so" kind of guys!
    Hi guys: I haven't been active for awhile, but just logged back in and typed "HD Brachy" into the search bar and for some reason this post popped up. I myself chose to pursue HD Brachytherapy as a monotherapy (which in NOT seeds, but rather 2 sessions 2 weeks apart of high dose, targeted radiation therapy) for my PC. The procedure was performed at Stanford by Dr. Buyyonouski and his team. I am now exactly one year out from the final treatment, and if I was pleased by that choice at the time, I am even more so now.

    My initial PSA was 7, Gleason 6's and 7's (3+4). I had been under active surveillance for about 9 months after the initial biopsy found the cancer. I had an MRI guided biopsy which found more, and higher grade cancer, and that's when I began looking at treatment. At first, I thought I was a shoo-in for surgery. I wanted that shit OUT. But then I got very spooked by possible side effects, and my brilliant wife started researching options and that's how we ended up at Stanford. You can read my details of my treatment in the thread called HD Brachy Monotherapy, my choice & my experience.

    In terms of your poll, my answers are the following;

    1) No way to know if they got all the cancer.-which i why a lot of guys feel better with a surgical option where the extent of the cancer can be seen in the path report and some knowledge of margins can be gained. So far, my PSA history has been from 7 to 2.45 at 3 month follow up, then 1.54 at 6 months to 1.46 at 10 months out. I am due for another test soon, but it is trending the right way (and I've been told that even a few "bounces" are normal and not to be concerned about unless a pattern emerges. In fact, Dr. B's nurse said that there is some research that indicates that a few bounces before stabilizing after RT can be indicative of a longer term survival rate...)

    2) Absolutely NO incontinence of any kind-EVER. Difficulty urinating for a few days post-treatment until I passed some clots, but then perfect. I do still take Flomax as a hedge.

    3) No ED so to speak of. Prior to the diagnosis, I had been considering taking Viagra when I wanted to ensure stellar performance. I just assumed that was a function of getting older. For about 2-3 months after the treatment, I did need Cialis or Vitamin V in order to maintain an erection. Now, that isn't necessary (especially for daytime sex), but 1 will pop a 1/2 or 1/4 cialis or V at night if I plan to be romantic. I still ejaculate, but less. Quality of orgasm is still great.

    I realize that this info may not be helpful to guys that have already gone under the knife or a different form of RT. I have been frustrated that when RT is mentioned on this forum, it's generally EBRT or Brachy seeds. My treatment is newer relatively speaking, but has great 10 year data and can be an excellent choice for guys up to "Intermediate risk" categories-which many fall into on this forum. There is lots of data out there on this...the only "drawback" is that it is currently only performed at Academic Centers: UCLA, Stanford and UCSF on the West coast, not sure of where in other regions but assume that would easy enough to find out. There is another user on the forum (SV Golfer) who underwent this several years ago, had a number of bounces and seems to be doing well. I encourage anyone to look into HD Brachy as a monotherapy and consider if it might be the correct choice for you. I'm so glad that I did!
    Enlarged prostate & protastitis since my 30's
    Completely asymptomatic in terms of sexual/urinary function
    PSA 2008 2.4
    PSA 2011 4.06
    PSA 2105 7.0 (free PSA 0.72)
    PCa Dx May 2015 from biopsy age of 64 (2/12 cores 10% involvement)
    Follow-up MRI guided biopsy in February 2016 DXd adenocarcinoma in
    9/20 cores ranging from 5%-70% involvement
    Gleason scores mixed 3+3=6. And 3+4=7
    2 rounds of High Dose Brachytherapy as Monotherapy at Stanford 4/20/16 & 5/5/16
    PSA August 2016: 2.45 (over 50% drop!)
    PSA November 2016: 1.54
    PSA March 2017: 1.46
    Told to expect PSA "bounces" typical of this therapy and not to worry unless they go up 3X in a row.
    No urinary, bowel or ED side effects noted. Take an occasional 1/2 Viagra or Cialis if I feel I might need it.

  5. #35
    I've read only positive reports on HDR Brachytherapy, and know of quite a number of guys who've been treated that way with good success. Had I chosen radiation, it would have been between HDR and SBRT, which also has shown great results
    Diagnosed at age 64 (in November, 2014), PSA 4.32
    Nov 2014 BX 3 of 12 cores positive original pathology G6 10%, G6 20%, second biopsy, 1st negative
    G8 (3+5), 70%. Johns Hopkins second opinion, G3+5=8 downgraded to 3+3=6 @80%
    Surgery with Dr Ash Tewari Jan 6, 2015
    Post surgical pathology, stage T2c, bilateral disease, upstaged to G7(3+4)
    5% of Prostate involved in Tumor
    Organ confined, negative Margins, negative SV, negative lymph nodes (9) PNI positive
    PSA 2/15 <.02, 4/15<.02, 7/15<.02, 10/15 0.00 (different lab), 1/16 0.00, 6/16 <.02, 1.17, .02 (uh-oh), 2/17 .02. May 2017 <.1 Lab did standard test.
    Repeat 5/17, .033 (new lab). Next test sept 2017
    Decipher score low risk, .37%

  6. #36
    Rob: As you and I have discussed on a prior occasion, there is a difference between LVI, which we see on my pathology report, and positive /metastatic lymph nodes. George was or is stage 4 because of the "metastatic to lymph nodes". LVI, which is seen on the pathology report, is another adverse factor which is seen when the pathologist looks thru the microscope and is related to aggressive cancer behavior. ( Early BCR) He can see the cancer has gone into the channels of the lymph system. My RO told me that it's prognostic significance is uncertain and controversial as it pertains to the long term. This is my best recollection of that conversation. Much different than either positive LN dissected during RP, or found otherwise, as in George's case. MM
    DOB:Feb 1958
    PSA: 9/15: 5.9 PC/Father
    DRE: Negative
    Biopsy: 10/1/15. Second Opinion University of Chicago. 9 of 12 cores positive. G6: 5 cores, G7 ( 4+3) 4 cores
    10/12/15: Ct scan/bone scan- Negative
    Clinical Staging: 10/28/15 T2c
    Surgery ( RALP) UC scheduled 12/29/15

    Final Pathology Report; Jan. 6 2016

    15 lymph nodes; no tumor present
    gleason upgraded to 9 ( 4+5)
    EPE; present
    Lymphovascular invasion present
    Right SV Positive
    Left SV and vasa deferentia, no tumor present
    PIN
    Perineural invasion present
    PM
    pT3bNO
    uPSA 2/9/16 0.05
    uPSA 3/23/16 0.11
    Casodex: 4/1/16-8/5/16
    Lupron: 4/15/16....present
    SRT: 6/14/16...8/5/16 38 treatments completed
    8/10/16. uPSA <0.05
    11/18/16 uPSA <0.05
    2/8/17 uPSA <0.05....Loyola University Chicago
    5/15/17 uPSA <0.05
    8/10/17 uPSA <0.05

  7. #37
    George/ Rob: If I have got this wrong, please correct me. MM
    DOB:Feb 1958
    PSA: 9/15: 5.9 PC/Father
    DRE: Negative
    Biopsy: 10/1/15. Second Opinion University of Chicago. 9 of 12 cores positive. G6: 5 cores, G7 ( 4+3) 4 cores
    10/12/15: Ct scan/bone scan- Negative
    Clinical Staging: 10/28/15 T2c
    Surgery ( RALP) UC scheduled 12/29/15

    Final Pathology Report; Jan. 6 2016

    15 lymph nodes; no tumor present
    gleason upgraded to 9 ( 4+5)
    EPE; present
    Lymphovascular invasion present
    Right SV Positive
    Left SV and vasa deferentia, no tumor present
    PIN
    Perineural invasion present
    PM
    pT3bNO
    uPSA 2/9/16 0.05
    uPSA 3/23/16 0.11
    Casodex: 4/1/16-8/5/16
    Lupron: 4/15/16....present
    SRT: 6/14/16...8/5/16 38 treatments completed
    8/10/16. uPSA <0.05
    11/18/16 uPSA <0.05
    2/8/17 uPSA <0.05....Loyola University Chicago
    5/15/17 uPSA <0.05
    8/10/17 uPSA <0.05

  8. #38
    Top User RobLee's Avatar
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    Thanks MM, I do remember our earlier discussion of LNI vs LVI (do I have those acronyms correct?). I'm still not sure I could differentiate between the two in casual conversation. I tend to stick with pathology grade and staging, and consider myself fortunate that among the other "basket of deplorables" that have been thrown at me, lymphatic involvement has not been one of them... other than my wife's lymphoma.

    Thanks for the response. I knew George had a more advanced case, but I wasn't sure why.

  9. #39
    My post was not relevant, but I can't delete. Sorry.
    DOB: May 1944
    In Active Surveillance program at Johns Hopkins
    Five biopsies from 2009 to 2014. The third and fourth biopsies were positive with one core and three cores <5% and G 3+3. Fifth biopsy was negative.
    OncotypeDX: 86 percent chance of PCa remaining indolent
    August 2015: tests are stable; no MRI or biopsy this year for my AS program
    August 2016: MRI unchanged from 2/2014; PSA=3.9; FPSA=26; PHI=28. No biopsy necessary.

    A NOTE ON PSA: My readings have been erratic for over 10 years; typically being 3.5-4.2, but spiking to over 10 at times.
    These spikes are asymtomatic to me, and resolve themselves. A prostate biopsy can triple the PSA, which lasts for months.
    Last Free PSA was 26. I don't worry about PSA spikes anymore.

  10. #40
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    Thanks for the excellent information, LuMore51

    Now I'll do some research on HDR Brachy. The more I read about the potential after effects of RP, especially with my complications, the more apprehensive I become. Is there nothing for sure about this disease?

    Could it be that the Forum is self selecting for those with the most serious issues???
    70 @ Dx
    PSA's over past 17 years - gradual increase from 1.0 to 3.0
    Current PSA 2.3
    TURP 2/16, 24 g removed, 35 g remaining
    G3+4 discovered
    3T MRI 5/16
    PI-RADS 5 Lesion in Right Apical Posterior
    MRI fusion guided biopsy 6/16
    14 cores; four G 3+3, one G3+4, Grade T1b
    CIPRO antibiotic = C. Diff infection 7/16
    Cured with Vanco for 14 days
    Second 3T MRI 1/17
    Worsened bulging of posterior capsule and new
    effacement of adjacent neurovascular fat planes
    Worrisome for extracapsular extention PI-RADS-5
    Oncotype DX GPS 3/17, LFP risk 63%, Likelihood of Low
    Grade Disease 81%, Likelihood of Organ Confined 80%
    RALP 7/17 Dr. Gonzaglo @ Univ of Miami
    G3+4 Confirmed, Organ confined
    pT2c pNO pMn/a Grade 2
    Dry so far

 

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