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Thread: Worried Wife, first time posting

  1. #1

    Worried Wife, first time posting

    Hi all, this is my first post but I have been lurking for a while. We have been dealing with prostate cancer for about 7 years now, ups and downs and all that. It was found in 2012, biopsy done, davinci prostatectomy in early 2013, biochemical recurrence in 2014, salvage radiation in 2015 and all was ok until last November.

    PSA was rising before then but not enough to warrant concern by the urologist. In November 2018 it doubled to 1.53 from 0.79 in December of the previous year. Now we had issues with the urologist pretty much since the get go, and we would have gone in sooner with a reading of 1.53 (which we were having done at our primary docs office) but the urologist gave us a target number of 20 mainly because my husband related that he wasn’t quite sure about hormone therapy.

    So then June of 2019 comes around and the PSA goes up to 3.99. After going to the urologist and having the PA ask where we’ve been, we decided to get a referral to an oncologist, so that’s where we are now. He’s a great oncologist and is more attuned to balancing what the patient wants with what needs to happen.

    One more psa was done in July and that went up to 4.69 (the scary part is that this was a three week difference. So now we’re at 6 week appointments with psa testing and waiting to do hormones if the psadt gets below 3 months. The latest bone scan came back without signs of divinities metastatic disease but there were a couple of spots that they said could be something or could be a degenerative process.

    So I feel like we’re stuck in a sort of limbo. The next appointment is mid October it’s hard because I don’t really have anyone to talk to about it who has been there and understands.

    I’ll try to input all the info in a few. Is there anyone else out there who is going through this again after salvage radiation?
    Last edited by HighlanderCFH; 09-18-2019 at 06:53 AM. Reason: white space added

  2. #2
    Yes please post his pca hist and dates along with biopsy info and final path. The FBs in here will be able to review and help. Blessings and peace being sent your way.

  3. #3
    I’ve updated my signature, hope this helps! Not sure if I’m missing anything.
    Posting on behalf of my husband (born 1960):
    9/2012- psa 5.190, referral to urology
    11/2012- prostate biopsy: 4/12 cores Adenocarcinoma
    1/2013-DaVinci RALP- T2cNoMo, Gleason 7(3+4)!Focally positive margin (1mm), no extraprostatic extension or seminal vesicle or lymph node invasion
    Psa undetectable until 9/2014, then 0.407.
    11/2014- psa 0.58, referred to radiation oncologist
    Early 2015- 8 weeks radiation to prostate bed, 5 days a week.
    2/2015 after radiation, psa down to 0.08.
    8/2015- psa 0.009
    11/2015- psa 0.024
    6/2016- psa 0.110
    6/2017- psa 0.563
    10/2017 psa 0.48
    12/2017- psa 0.79
    9/2018- psa 1.53
    6/2019- psa 3.99
    7/2019- psa 4.69- currently being treated by oncologist

  4. #4
    Hi Mike's wife and Welcome to the Forum. Mike had a hand that certainly didn't look bad, with a G7 (3+4) pT2 and a negligible positive margin. I'm sure others with experience will post their thoughts.

    I suggest discussing with your doc the possible value of an advanced scan like auxim or Ga-PSMA-PET, given the completed SRT to the prostate bed, a PSA sufficiently high for such a scan to be successful, and the equivocal bone scan. You want to locate the source(s) contributing to the rising PSA.

    Were there conversations about starting ADT and/or other treament at the time of PSA rise to over 0.5 following SRT, or only more recently? I'm not sure I understand how PSA doubling time figures in now, given the absolute numbers and that SRT has already been done.

    A Decipher test on the removed RP tissue could privide information regarding the metastatic potential of Mike's PCa. If there was doubt about the value of ADT or other systemic treatment, the results could make a difference.

    How many lymph nodes were removed and examined at the RP?

    I fully understand and agree with joint decision-making between patient and doctor; however, Mike is young and his current treatment views should include doing what is best now to ensure a long life. His PSA has not been stuck in a limbo; it's been rising since 2015. Your signature ends with "currently being treated by oncologist," but I don't see a treatment

    Djin
    Last edited by DjinTonic; 09-18-2019 at 02:57 AM.
    69 yr at Dx, BPH x 20 yr, 9 (!) neg. Bx, PCA3-
    7-05-13 TURP for BPH (90→30 g) path neg., 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
    Bone scan, CTs, X-rays: neg.
    8-7-17 Open RP, neg. frozen sections, Duke Regional
    SM EPE BNI LVI SVI LNI(16): negative, PNI+, nerves spared
    pT2c pN0 pMX acinar adenocarcinoma G9 (4+5) 5% of prostate (4.5x5x4 cm, 64 g)
    11-10-17 Decipher 0.37 Low Risk: 5-yr met risk 2.4%, 10-yr PCa-specific mortality 3.3%
    Dry; ED OK with sildenafil
    9-16-17 (5 wk) PSA <0.1
    LabCorp uPSA, Roche ECLIA:
    11-28-17 (3 m ) 0.010
    02-26-18 (6 m ) 0.009
    05-30-18 (9 m ) 0.007
    08-27-18 (1 yr.) 0.018 (?)
    09-26-18 (13 m) 0.013 (30-day check)
    11-26-18 (15 m) 0.012
    02-25-19 (18 m) 0.015
    05-22-19 (21 m) 0.015
    08-28-19 (2 yr. ) 0.016
    Avg. = 0.013

  5. #5
    Hi Djin, thanks for the reply!

    The doctor had ordered the Axumin scan the first day we saw him but insurance denied it saying it was experimental. Went through two appeals with no luck. So for that we have to wait until next August when my husband turns 60 and starts getting his navy reserve retirement and Tricare to see if they’ll cover it.

    We discussed hormone therapy with the doctor as it is something my husband is on the fence about. It’s hard to say that because I want him to be around as long as possible but he’s not sure of the side effects of it. The oncologist is willing to let him hold off on ADT as long as possible and gave us a cutoff of a doubling time of 3 months or less before he will push for ADT.

    As for lymph nodes, one was supposedly removed but the pathologist said there wasn’t a lymph node it was just fat tissue.

    Not sure if the decipher test is still relevant as RALP was 6 years ago.

    We’re definitely dealing with a quality of life versus quantity of life dilemma. He also has a possible lung issue that we are keeping an eye on at the moment. We’ve had to have many hard discussions about end of life issues and what prostate cancer means for our future. Not that he’s not willing to treat with ADT or chemo but it will not be an easy decision. I wish we knew more about what to expect from the point where we are forward.

    Anna
    Posting on behalf of my husband (born 1960):
    9/2012- psa 5.190, referral to urology
    11/2012- prostate biopsy: 4/12 cores Adenocarcinoma
    1/2013-DaVinci RALP- T2cNoMo, Gleason 7(3+4)!Focally positive margin (1mm), no extraprostatic extension or seminal vesicle or lymph node invasion
    Psa undetectable until 9/2014, then 0.407.
    11/2014- psa 0.58, referred to radiation oncologist
    Early 2015- 8 weeks radiation to prostate bed, 5 days a week.
    2/2015 after radiation, psa down to 0.08.
    8/2015- psa 0.009
    11/2015- psa 0.024
    6/2016- psa 0.110
    6/2017- psa 0.563
    10/2017 psa 0.48
    12/2017- psa 0.79
    9/2018- psa 1.53
    6/2019- psa 3.99
    7/2019- psa 4.69- currently being treated by oncologist

  6. #6
    Hi Mike's Wife! Welcome to The Forum. Very sorry that you have arrived here with a 2nd round of PCa recurrence. Keep in mind that you are not alone and will meet and receive support from many others!

    We are not MD's nor medical professionals so we can not offer medical advice. However, we can offer suggestions based on our collective experiences.

    IMO, some points to consider are:

    - The primary objective is to prevent metastatic disease. Ask the Oncologist: "At what PSA level does metastatic disease occur?"

    - His PSA is clearly rising. Starting Hormone Therapy (HT) or Androgen Deprivation Therapy (ADT) now will put the brakes on PCa activity.

    - Ditto to DjinTonic's post #4. The new scans Axumin and PSMA PET can locate recurrent PCa. Often, remnant PCa will spread via lymph nodes. Ask the Oncologist: "How can we pinpoint locate the remnant PCa?"

    - It is > 6 weeks since the July PSA (4.69). My suggestion is to go ahead and have another PSA test this week. If it has risen significantly, then move up the Oncologist appointment to discuss starting HT/ADT.

    Others will certainly chime in.

    You are in a stressful situation but you will get through it. Take all possible steps that provide the best chance to achieve full Cure.

    We are with you every step of The Journey.

    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 = G7 (3+4) and 5 = Gleason 6
    Referred to URO Surgeon
    March '12: Robotic RP: Left: PM + EPE. 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 c tertiary pattern 5 / Prostate Size = 32 grams / Tumor = Bilateral: 20% / PNI: 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 91 Months Post Op: Mean = 0.022 (22x uPSAs: Range 0.017 - 0.032) LabCorp: Ultrasensitive PSA: Roche ECLIA
    Continence = Very Good (≥ 99%)
    ED = present

  7. #7
    Quote Originally Posted by Mike’s Wife View Post
    Now we had issues with the urologist pretty much since the get go, and we would have gone in sooner with a reading of 1.53 (which we were having done at our primary docs office) but the urologist gave us a target number of 20 mainly because my husband related that he wasn’t quite sure about hormone therapy.

    He’s a great oncologist and is more attuned to balancing what the patient wants with what needs to happen. One more psa was done in July and that went up to 4.69 (the scary part is that this was a three week difference. So now we’re at 6 week appointments with psa testing and waiting to do hormones if the psadt gets below 3 months.
    Rather difficult for either doctor to properly treat your husband if he is tying their hands.
    Last edited by Duck2; 09-18-2019 at 03:06 AM.
    YOB 1957

    DX 12/18, GS 8, 4+4 6/12 cores, LL Apex 100%, LM Apex 60%, LL Mid 50%, LMM 40%, LL Base 5%, LM <5%, Right side negative.

    3/6/19. Pathology - Grade Group 4 with Intraductal Carcinoma
    T3aNO, GS8, 21 mm unifocal tumor 10%. -7 Nodes, - SV, - Margins, - PNI,
    - bladder neck neg., +LVI, + EPE non focal apex/mid lateral 1mm max extension, Cribriform pattern present. Decipher .86 High Risk.

    PSA 3/27/19 03 (29 days)
    4/25/19 <.03. (58 days)
    5/25/19 <.02. (88 days)
    9/10/2019. <.02. (198 days)

    3 Part Modality Treatment

    2/25/19 Robotic Laparoendoscopic Single Site Surgery outpatient Cleveland Clinic,

    ADT - started 6/19, end date 6/21.

    ART - Completed 9/26/19. (78 Gy, yes, I glow in the dark)

  8. #8
    At Mike's juncture, the question is when to start ADT which is probably the next step.

    In his "Surviving Prostate Cancer" tome, Dr. Walsh discusses exactly this. When is the opportune time to start hormone treatment- should it be done immediately or it is better to delay this treatment with asymptomatic patients.

    At least in the 3rd edition, Walsh doesn't see delaying ADT as detrimental to life expectancy, although he acknowledges that other doctors have a different view on this point.
    Nov 2013 PSA 4.2 Biopsy Jan 2014- 1 core positive, 20% Gleason 6, doctor highly reco'ed robotic RP - 2nd opinion at UPMC April 2014, put on active surveillance. 2nd biopsy Feb 2015, results negative. PSA test Feb 2016, 3.5. 3rd Biopsy Feb 2016. 3 positive cores less than 5%, Gleason 6. Octotype DX done April 2016, GPS Score of 24--rated "Low risk". PSA test 8/2016, 3.2. PSA test 1/2018 2.2 (after 7 months of proscar) PSA test 7/2018 2.3, PSA test 7/2019 2.0


    DOB 1956, in Pittsburgh, USA

  9. #9
    Moderator Top User HighlanderCFH's Avatar
    Join Date
    Nov 2011
    Posts
    7,232
    Hi Anna,

    Welcome to what is probably the best prostate cancer forum in the solar system. You will find lots of information AND support, including from many other wives who are journeying down this road with their husbands.

    You have already received great info and suggestions, so there is not much I can add to it.

    But I CAN add my thoughts and prayers to the others while repeating what others have said -- you have found your friends to help you both along. We will be here with you every step of the way!

    Wishing you BOTH the very best!
    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.
    Eight annual post-op exams 2012 through 2019: PSA <0.1
    Semi-firm erections without "training wheels," usable erections with 100mg Sildenafil.
    NOTE: ED caused by BPH, not the surgery.

  10. #10
    Top User
    Join Date
    Aug 2016
    Posts
    1,771
    Has your husband been screened for depression? Failure to act responsibly or take action on healthcare choices may be a sign of mental health issues and depression. Depression is treatable, and he certainly has good reason to be depressed. Depression is the common cold of healthcare. It is common, everyone experiences it, it comes and goes, it is contagious, and can become chronic if left untreated. The good news is it is treatable, and treatment can highlight it's symptoms and warning flags allowing you the possibility of moving past treatment to self management once you experience the distinctions through treatment that separate it from your normal perceptions. A diagnosis of depressions in our culture is still unfortuantely stigmatizing encouraging people to hide or deny it keeping them from dealing with it and accepting it for what it is and using the tools available to move past it.

    Nobody can know how they will respond to hormone therapy, side effects or no.

    Early detection and early treatment is the mantra for cancer, any cancer, all the way down. The side of effects of treatment pale in comparison to the effects of the cancer. We treat cancer aggressively because not treating it or delaying treatment is worse. When the time comes to stop treatment you will know. The worrying part for you is knowing this is not a time for fence sitting.

    As we age, when it rains, it pours. There is power in choosing the rain. My mother is 98 and doesn't want to be here anymore. Life isn't so good. She wonders why she is still here and can't figure out how to make it end. Then it's time for dinner and she slowly gets up and walks to dinner with her walker. She loves to eat.

    Laughter through tears is one of my favorite emotions. Life finds a way. Right now, for your husband, there's no joy in Mudville. I get it.

    Unless there is certainty of dying of something else sooner, the standard of care is to treat it, and for very good reason.
    Last edited by Another; 09-18-2019 at 01:59 PM.

 

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