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Thread: My Cousin has Prostate Cancer

  1. #1
    Moderator Top User HighlanderCFH's Avatar
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    My Cousin has Prostate Cancer

    Hi all,

    The info below is from my cousin, Jerry, who is well up into his 70s. He was recently diagnosed with PC. He is somewhat reluctant to come onto the board, but I said I would post his situation -- on his behalf -- and let him know what advice/comments are offered.

    So, down below, is his situation.

    Thanks,
    Chuck


    Short note. Got all the test results back now with a Gleason score of 7, Stage less than 3 and no evidence of cancer metastasizing out of the prostate gland itself. So I have a couple of more appointments coming up and then I think off to radiation treatment. I’ll probably start this up in mid/late July.


    Prostate core samples (12)
    A Left apex Adenocarcinoma Gleason 4+3 grp 3
    B Left mid benign
    C left base benign
    D Left lateral apex Adenocarcinoma Gleason 4+3 grp 3
    E Left lateral mid Adenocarcinoma Gleason 4+3 grp 3
    F Left lateral base Adenocarcinoma Gleason 4+3 grp 3
    G Right apex Adenocarcinoma Gleason 3+3 grp 1
    H right mid benign
    I right base benign
    J Right lateral apex benign
    K Right lateral mid Adenocarcinoma 3+3 grp 1
    L Right lateral base high grade Prostatic intraepithelial Neoplasia (HGPIN)


    FROM LAST WEEK:
    The continuing saga of the prostate gland. I met with a Radiation Oncologist and they seem to have all the latest bells and whistles in
    their equipment. He had a suggested list of:


    Heart Op.
    Hormone Therapy
    Sow seeds
    Put in Markers
    Radiation


    He wanted me to try and get a heart operation (Watchman device) to correct my Afib in order to get me off the Xaralto blood thinner. My Cardiologist said “not going to happen” and stay on the Xaralto.


    Next on list was to see my Cancer/Hematologist re Hormone Therapy. He suggests Lupron 22.5 (3 month injection)


    Both Doctors say “No” to the seeds and markers on account of bleeding concerns. (Xaralto and low platelet count from MDS)


    Hematologist says Hormone and Radiation can be done in conjunction with each other.


    My concerns is with the Lupron - has an enormous list of side effects. And I need to clarify this but there was a ;possibility of using a drug called Casodex along with the Lupron.


    If the new technology EBRT is so good WITH IMRT and IGRT are the markers really necessary for low dose radiation?


    This prostate cancer treatment can get so complicated and there is no one path or authority that says this is the best way
    to go. Very frustrating. My PSA has gone from about a 6 to a 14 (last week test) in 18 months and I want to get started on the radiation asap and I don’t want to be out on the roads back and forth when the weather gets bad.


    I guess I wouldn’t mind the final solution to be Lupron with a 3 month injection and then get on with 8-11 weeks of low dose
    radiation. I don’t know how this Casodex plays into all of this, I have a call into them about it.


    If I were younger and then more healthy, I would opt for taking it out. But at my age and with other health issues, this thing
    becomes a real nightmare. I’m sure the recommendations are meant to give you the Rolls Royce treatment and there is probably
    some money to be made in this list of suggested treatments but I’m a 1942 Chevy and I just want to get me patched up to get
    me a few more miles down the road.




    FROM MONDAY:
    I received a call from my original Urologist this afternoon, he was on vacation, and he and my Cardiologist are good friends.
    My Cardiologist said to call him and get his opinion on the "Hormone Therapy” issue. He agreed that the side effects of
    hormone treatment can be pretty bad. He also said there was very little statistical evidence that that prior hormone treatment before radiation therapy would improve your odds of success. He also knows the Radiation Oncology doctor and said to tell him that I
    wanted external treatment only, no surgery and no hormones. I’m fine with that and it takes a big load off my mind. I said a
    prayer last night asking our Lord to help and give me a decision on this and the prayer was answered. I am thankful for this
    and will not ask for the winning numbers for the next big lottery.


    I still think it would be interesting to hear some other opinions on this. Treatment is like the wild west and there must be a thousand
    or more treatment paths and no one can say with any great degree of certainty which one is best. I guess you choose the one you
    feel most comfortable with and go with it. Just an interesting side note but if you Google the price of a Lupron injection, it comes
    out to about two thousand dollars and every 3 months, eight thousand a year. Maybe this helps drive the hormone treatment.


    Jerry
    July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA 9/ 2011 = 5.7.
    Local uro DRE revealed significant BPH, no lumps.
    PCa Dx Aug. 2011 age of 61.
    Biopsy DXd adenocarcinoma in 3/20 cores (one 5%, two 20%). T2C.
    Gleason 3+3=6. CT abdomen, bone scan negative.
    DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
    Surgeon was Dr. Matthew Tollefson, who I highly recommend.
    Final pathology shows tumor confined to prostate.
    5 lymph nodes, seminal vesicules, extraprostatic soft tissue all negative.
    1.0 x 0.6 x 0.6 cm mass involving right posterior inferior, right posterior apex & left
    mid posterior prostate. Right posterior apex margin involved by tumor over 0.2 cm length,
    doctor says this is insignificant.
    Prostate 98 grams, tumor 2 grams.
    Catheter out in 7 days. No incontinence, minor dripping for a few weeks.
    Seven annual post-op exams 2012 through 2018: PSA <0.1
    Semi-firm erections 5 years post-op whenever the moon turns into blue cheese.
    NOTE: ED caused by BPH, not the surgery.

  2. #2
    Chuck, sorry to hear about your cousin's situation, but of course the good news is that it apparently was caught fairly early before the horses have left the barn. Unfortunate that it is 4+3 and PSA in the teens, but he does have many options available... granted, complicated by the blood thinner which seems to be universal these days.

    Most likely, traditional IMRT would be the best course to follow, probably 44 Tx for ~80 Gy. Lots of guys in their mid 70's were getting that protocol when I was in ART. The addition of Lupron would be a more aggressive approach if there were indeed more serious pathology. As I understand it, the advantage is 5-10% in addition to RT, but that stat is I believe for aSRT, not primary radiation. Some RO's would include Casodex in more advanced cases, and a few even recommend Casodex monotherapy where there is the risk of disease progression during RT. (My summation of what I've read... and I am certainly not an authority on this).

    Presumably Jerry is on Medicare, which if traditional A+B+supplemental, covers the cost of all Lupron injections. I do not believe it is the gold mine that many cancer patients believe to be driving the pharmaceutical industry. They use what works and has been proven safe and effective. Best wishes for your cousin's treatment, and for your family's concerns during this period.
    Late 2012: PSA 4, age 62 all DRE's 'normal'
    Early 2014: PSA 9.5, TRUS biopsy negative
    2015: PSA's 12, 20, Mar'16: PSA 25, changed Uro
    Jun'16: MRI fusion biopsy, tumor right base, 6/16 cores: 2-100%+2-40% G8(4+4)
    Aug'16: DaVinci RP, -SM, 11 LN-, 53g, 25% involved, PNI, 6mm EPE, BL SVI, pT3B
    Jan'17: started 18 months Lupron ADT, uPSA's ~.03
    May'17: AMS800 implanted, revised 6/17
    Aug'17: 39 tx (70 Gy) RapidArc IGIMRT
    Apr'18: Dx radiation colitis
    Oct'18: Dx sclerosing mesenteritis
    Jan-Apr-July 2018: PSA's = 0.0, T=9 (still on Lupron)
    "Everyone you meet is fighting a battle you cannot see"
    Mrs: Dec 2016
    Dx stage 4 NHL/DLBCL, Primary Bone Lymphoma
    spinal RT boost+6X R-CHOP21+IT MTX via LP. Now in remission
    Read our story at CancerCoupleBlog.com

  3. #3
    Chuck! Very sorry to read about Jerry's new membership to "The PCa Club." Jerry is lucky to have detected it early and to have a cousin who both highly knowledgeable and can keep Jerry pointed in the right direction. Hoping that Cousin Chuck can get Jerry to join or at least view The Forum's offerings.

    Where is Jerry located? Other FBs may have some "local" insights and suggestions.

    Of interest is: No PSA history provided?!?!?

    Re HT: Lot's of our FBs have been through it. Though it can be highly problematic, most have not complained about their HT experience. It looks as though the plan will be HT for < 2 years. Thus RT + HT should lead to 100% cure allowing Jerry to cross off PCa from his list of health risks.

    Let Jerry know that he has the entire Forum Team pulling for him!

    Good luck!

    MF
    PSA: Oct '09 = 1.91, Oct '11 = 2.79, Dec '11 = 2.98 (PSA, Free = 0.39ng/ml, % PSA Free = 13%)
    Referred to URO MD
    Jan '12: DRE = Positive: "Left induration"
    Jan '12: Biopsy = 6 of 12 Cores were Positive: 1 = Gleason 7 (3+4) and 5 = Gleason 6
    Referred to URO Surgeon
    March '12: Robotic RP: Left Positive Margins + EPEs. MD waited in surgery for preliminary Path Report then excised substantial left adjacent tissue(s) down to negative margins and placed 2 Ti clips for SR guidance, if needed in future.
    Pathology: Gleason (3+4) pT3A pNO pMX pRO / Prostate Size = 32 grams; Tumor = Bilateral; 20% / Perineural invasion: present
    3 month Post Op standard PSA = <0.1 ng/ml
    1st uPSA at 7 months Post Op = 0.018 ng/ml uPSA remains "stable" at 77 Months Post Op: Mean = 0.021 (18 uPSAs: Range 0.017 - 0.026) LabCorp: Ultrasensitive PSA: Roche ECLIA
    Continence = Very Good (≥ 99%)
    ED = present

  4. #4
    Chuck, you’ve gotten good input, nothing more I can add. I just wanted to say , sorry to hear that your cousin has been forced to join our club
    Diagnosed at age 64 (in November, 2014), PSA 4.3
    Nov 2014 BX 3 of 12 cores positive original pathology G6 10%, G6 20%,
    G8 (3+5), 70%. Johns Hopkins second opinion, G6, G6, G6
    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, Margins, SV, lymph nodes (9) all negative, PNI positive
    PSA <.02 until (uh-oh), 2/17 .02. Then 5/17-.033, 8/17-.033, 11/17-.046, 4/18-.060, 6/18-.068, 7/18- .082, 8/18-. 078.
    Decipher score low risk, .37
    ADT/Firmagon started August 2018. SRT to start SEPT 2018

  5. #5
    Cousin Jerry, who is well up into his 70s, is lucky to have you in his corner, Chuck!

    Given his age, intermediate numbers, and other health challenges, if if were me, I would go for IMGT as soon as possible. 1.8 Gy per fraction for between 39 and 44 sessions (fractions), and I believe the questionable benefit of ADT, given his numbers, his health, and his age would buy him little if anything. It sounds like he is very well lined up with specialists.

    Remember, I am neither a physician, nor do I stay at Holiday Inns. Best of luck to him!
    72...LUTS for the past 7 years
    TURP 2/16, 24 g removed, 35 g remaining
    G3+4 discovered
    3T MRI 5/16
    MRI fusion guided biopsy 6/16
    14 cores; four G 3+3, one G3+4,
    CIPRO antibiotic = C. Diff infection 7/16
    Cured with Vanco for 14 days
    Second 3T MRI 1/17
    Worsened bulging of posterior capsule
    Oncotype DX GPS 3/17, LFP risk 63%, Likelihood of Low
    Grade Disease 81%, Likelihood of Organ Confined 80%
    RALP 7/13/17 Dr. Gonzaglo @ Univ of Miami
    G3+4 Confirmed, Organ confined
    pT2c pNO pMn/a Grade 2
    Dry for first 8 weeks, ED very minimal
    PSA 0.32 to .54 over 3 months
    It's called Persistent PSA, Decipher + DCFPyl & MRI Scans - 11/17
    A one inch tumor remains in prostate bed = failed surgery
    All met scans clear
    SRT, 2ADT, IMGT 70.2 Gys @1.8 per completed 5/18
    We'll see....what is not known dwarfs what is thought to be fact

  6. #6
    Moderator Top User HighlanderCFH's Avatar
    Join Date
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    A big thanks to all for your replies.

    Of all irony, Michael, my cousin is from Atlanta. LOL

    I will pass along all of your comments/advice and see if he wants to ask any questions.

    Thanks much!!!
    Chuck
    July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA 9/ 2011 = 5.7.
    Local uro DRE revealed significant BPH, no lumps.
    PCa Dx Aug. 2011 age of 61.
    Biopsy DXd adenocarcinoma in 3/20 cores (one 5%, two 20%). T2C.
    Gleason 3+3=6. CT abdomen, bone scan negative.
    DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
    Surgeon was Dr. Matthew Tollefson, who I highly recommend.
    Final pathology shows tumor confined to prostate.
    5 lymph nodes, seminal vesicules, extraprostatic soft tissue all negative.
    1.0 x 0.6 x 0.6 cm mass involving right posterior inferior, right posterior apex & left
    mid posterior prostate. Right posterior apex margin involved by tumor over 0.2 cm length,
    doctor says this is insignificant.
    Prostate 98 grams, tumor 2 grams.
    Catheter out in 7 days. No incontinence, minor dripping for a few weeks.
    Seven annual post-op exams 2012 through 2018: PSA <0.1
    Semi-firm erections 5 years post-op whenever the moon turns into blue cheese.
    NOTE: ED caused by BPH, not the surgery.

  7. #7
    Quote Originally Posted by HighlanderCFH View Post
    A big thanks to all for your replies.

    Of all irony, Michael, my cousin is from Atlanta. LOL

    I will pass along all of your comments/advice and see if he wants to ask any questions.

    Thanks much!!!
    Chuck
    Please do! We have had several FBs in the past who were treated in Atlanta: at Emory/St Joseph's & Northside H. I went "west" to Birmingham.

    MF

  8. #8
    Moderator Top User HighlanderCFH's Avatar
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    Thank you!
    July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA 9/ 2011 = 5.7.
    Local uro DRE revealed significant BPH, no lumps.
    PCa Dx Aug. 2011 age of 61.
    Biopsy DXd adenocarcinoma in 3/20 cores (one 5%, two 20%). T2C.
    Gleason 3+3=6. CT abdomen, bone scan negative.
    DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
    Surgeon was Dr. Matthew Tollefson, who I highly recommend.
    Final pathology shows tumor confined to prostate.
    5 lymph nodes, seminal vesicules, extraprostatic soft tissue all negative.
    1.0 x 0.6 x 0.6 cm mass involving right posterior inferior, right posterior apex & left
    mid posterior prostate. Right posterior apex margin involved by tumor over 0.2 cm length,
    doctor says this is insignificant.
    Prostate 98 grams, tumor 2 grams.
    Catheter out in 7 days. No incontinence, minor dripping for a few weeks.
    Seven annual post-op exams 2012 through 2018: PSA <0.1
    Semi-firm erections 5 years post-op whenever the moon turns into blue cheese.
    NOTE: ED caused by BPH, not the surgery.

  9. #9
    I started several threads about my biopsy results and discussion today (Friday Aug 10) with my urologist. Due to my very high PSA density and very low gland size he is pushing me to immediate treatment just as your cousin is experiencing. .

    A key part about my treatment choices was my life expectancy, current health, and how I wanted to live my remaining years. Your cousin seems to have a number of comorbidities that do not suggest a long life expectancy. Nor does it seem his quality of life will be as high as one would want. Is he carefully considering the potential benefits, e.g. additional years of life, compared to the decreased quality of that life? The red text seemed to indicate he was aware of the trade off.

    I have had several Afib episodes and my father suffered dozens of Afib events requiring cardio-conversion in the last five years of his 90-year life. I do know that the blood thinner regimen puts a real strain on every other medical decision.

    My father experienced total remission from a very rare and typically fatal lymphoma at about age 80 and had no problem with the nasty 2-years of treatment required to get there. But at age 88 with a worsening Afib situation he chose not to take any additional invasive steps to manage the Afib. He felt the potential negative side effects were not worth whatever gain he might enjoy. Two years later he died of a non-medical condition unrelated to either his lymphoma or his heart.

    His choice not to treat broke my mother's and sister's heart but I totally understood his reasoning. He and I went for a long hike through a SW Florida swamp just a month before his death and he was very happy with the choices he had made.

    I am 71 and other than my PCa am quite healthy. Every life expectancy test I use gives me another 17 to 23 years so I am willing to take drastic steps today (RALP ASAP) to ensure PCa will not interfere with that 17+ year life. Is your cousin really in a life space (medically / physically) that drastic PCa treatment with all it's side effects will have a net benefit in what ever years he has left?

    I know you have thought through this stuff many times - has he or have you really talked him through it?
    DOB: July 1947
    PSA: 2.0/2004 4.0/2010 5.8/2010 4.5/2012 5.6/2013 Normal DRE each year
    5/18 PSA: 9.2
    6/18 PSA: 10.2 & 8.4% Free
    DRE small soft prostate w/no abnormalities
    6/28 3T mpMRI PIRADS 3
    18 cc gland=PSD 0.57 ng/cc
    0.32 cc lesion in apical PZ with subtle T2 signal hypointensity
    mild restricted diffusion of contrast into lesion
    remainder of prostate unremarkable intact capsule
    7/18 4KScore 34% Probability Gleason =>7

    8/03/18 Biopsy: Adenocarcinoma 6 of 13 cores ONLY L lobe
    T1c / Grade II / unfavorable intermediate
    extent of G3-G4 tissue far greater than indicated by MRI
    G6 (3+3) 70% LL Base 50% L Lateral Mid 20% L Base
    G7 (3 +4) 100% LL Apex 20% L Mid 60% L Apex
    8/15/18 Clear CT scan and Bone Scan
    RALP 8/23/18 pT3a, G7 (3+4), 20% involvement, SM+ (Focal 2mm G6), EPE(Focal G6)+, PNI+, LNI-, SVI-, LVI-
    7g Tumor 20x size in MRI report & in BOTH lobes not just L as biopsy reported

    10/3/18 PSA = 0.021

  10. #10
    Moderator Top User HighlanderCFH's Avatar
    Join Date
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    He is aware of his various physical problems. He has opted to go with radiation only. As he put it, "taking the "Camry LE” choice over the full blown “Lexus” offering."

    Hopefully he'll manage to get the PC behind him and only have his other issues to deal with. One good thing in his favor is that we do enjoy great longevity in our family, with many going well up into their 90s.

    As I wish the best for him, I also wish the same for you OTS.

    Thanks again,
    Chuck
    July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA 9/ 2011 = 5.7.
    Local uro DRE revealed significant BPH, no lumps.
    PCa Dx Aug. 2011 age of 61.
    Biopsy DXd adenocarcinoma in 3/20 cores (one 5%, two 20%). T2C.
    Gleason 3+3=6. CT abdomen, bone scan negative.
    DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
    Surgeon was Dr. Matthew Tollefson, who I highly recommend.
    Final pathology shows tumor confined to prostate.
    5 lymph nodes, seminal vesicules, extraprostatic soft tissue all negative.
    1.0 x 0.6 x 0.6 cm mass involving right posterior inferior, right posterior apex & left
    mid posterior prostate. Right posterior apex margin involved by tumor over 0.2 cm length,
    doctor says this is insignificant.
    Prostate 98 grams, tumor 2 grams.
    Catheter out in 7 days. No incontinence, minor dripping for a few weeks.
    Seven annual post-op exams 2012 through 2018: PSA <0.1
    Semi-firm erections 5 years post-op whenever the moon turns into blue cheese.
    NOTE: ED caused by BPH, not the surgery.

 

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