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Thread: prostate personality change

  1. #21
    Dear Robert: As I mentioned, don't waste your time worrying about the plane, so just let that go.

    Reasons: Multiply this picture x 100 for just the airframe.

    Last edited by Dead Man Walking; 11-25-2017 at 12:48 AM.
    05/6/16 pre-op physical for surgery show low WBC & RBC
    5/22/16 [Birthday] Results of BM biopsy: AML 25% blasts with inv t(3:3) mutation, HIGH risk
    5/30/16 Undergo 3+7 chemo, but it doesn't touch AML, infections nearly kill me. Blasts 65%
    7/04/16 Diagnosis now Refractory AML. [:tombstone:]Six cycles of azacitidine, 21 shots over 7 days w/ 1.5" needle into gut + below navel.
    11/05/16 Move to NOLA - Infusion center 4 minutes away. 15 shots for 5 days with 5/8" 25 ga. needle Huge increase in quality of life.
    12/28/16 BMB shows blasts 12%
    4/16/17 BMB shows CD34 16%, cycles dropped to 4 weeks
    7/20/17 Diagnosis changed to "indolent leukemia", aka MDS
    7/27/17 BMB shows CD34 17%
    8/15/17 Venclexta chemo in PILL form added Onc estimates survival time now 2 - 4 YEARS.
    10/26/17 BMB results show 17/20 metaphases with inv(3:3) mutation-low blood cell counts - transfusions ineffective
    12/4/17 Diagnosis: Uncontrolled refractory AML

  2. #22
    Newbie New User
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    Oct 2017
    Quote Originally Posted by SubDenis View Post
    Robert, i am neither a doctor, not a psychologist but I do get what its like to have cancer. I am a few months into this journey and can share the emotional ride can be a tough one at times. I use writing as a meditative tool and wrote the below some time ago which may be helpful to allow you to understand. Just love your brother as he shows up! Peace Denis

    I have cancer in my body and my job is to keep it out of my spirit! The shock of cancer can only be understood by those who have it. I have known many who had cancer and felt empathy for them but did not get the gut-wrenching shock until my doctor said, “you have cancer!” My mind went to almost shut down as he talked, and I am sure I heard little of what he had to say. The first impact of cancer was a profound loneliness and a guttery level of fear that I have never experienced.
    The early days of being diagnosed were a mess of ignorance and fear, two forces which can do a number on your mind and spirit. I could distract the fear though information, reading and talking with others. However, there were those times like sleepless nights or just a flash of the possible treatments that could send me into a tailspin. Sure, there was comfort in reading other guys success stories and with that come the unsuccessful stories which seemed to overwhelm the success stories.
    Cancer is a lonely disease. Support groups, forums and the like take the edge off and there are just times that the Dis-Ease sets in your heart and drags you down. The other force which makes it so difficult is the slowness of treatment decisions and how the medical system moves. I find it discomforting to hear “take you times, no rush, etc.” While this is good advice to learn and understand your options, the fact that months must go by to get to a treatment decision is not comforting.
    Having cancer is a physical ailment and if I am not careful it will become a spiritual and mental ailment also. This is when fear overwhelms logic and trust. I have had hours of deep confusion and near despair because I let the cancer get in my mind and in my spirit. And those around me also suffer due to my discomfort.
    It is critical for me and those around me that I show up strong and ready to be the best I can be today with cancer. I cannot change that fact, but I can choose how I show up today. I cannot predict how my disease will manifest, how effective the treatment will be and what side effects will happen in the future. But I can decide to be as healthy as I can be today. I can help those around me, be grateful for the life I have today. Yes, I can choose to be grateful with cancer! I have already met dozens of guys who share the disease and we have laughed and worried together, have share advice and experiences, and shared hope and courage.
    As Movemeber approaches and our disease will get some awareness, I am committed to keep my spirit grateful, to be clear about being the best I can be today, and to move forward on the cancer journey.
    This is exactly what im going through and am dealing with .Thank you for sharing this.
    Date of Diagonisis 10/11/2017 Age 50 PSA Level @ 4.57
    A. Right Lobe - Infiltrative prostatic adenocarcinoma with the following features
    Gleason Grade 3+4 7 of 10 Grade Group 2 of 5
    extensive tumor involvement in 5 of 6 core biopsies comprising about 60 % of tissue volume visulized,with
    greatest confluent tumor length of 1.1 cm
    extensive perineural invasion identified with s-100 immunohistochemical stains

    B. Left Lobe- Benign prostatic tissue

  3. #23
    Senior User
    Join Date
    Jun 2017
    Cancer is a lonely disease. Support groups, forums and the like take the edge off and there are just times that the Dis-Ease sets in your heart and drags you down. The other force which makes it so difficult is the slowness of treatment decisions and how the medical system moves.
    As Movemeber approaches and our disease will get some awareness, I am committed to keep my spirit grateful, to be clear about being the best I can be today, and to move forward on the cancer journey.

    Movemeber is not approaching, it is here. I am very sorry you feel alone but cancer is not a lonely disease unless you make it so. From the beginning I have been embraced by family and felt their love. This site and the people here have brought comfort, caring and love to me. My family has rallied around me. I have never felt so much love as in the last few months. I am sorry you have had this experience but it is not what I have felt.
    Last edited by MrEd; 05-18-2018 at 12:24 AM.
    DOB 1955

    3/31/17 PSA 15.1
    4/5/17 DRE Negative
    4/7/17 PSA 14.1
    4/19/17 TRUS Negative
    5/1/17 Biopsy 12 cores
    RLB 3+4 30%
    RM 3+3 6%
    RLM 4+3 90%
    RLA 4+3 5%
    Left side negative
    5/26/17 Cat scan Negative
    6/7/17 Full body bone scan, Negative
    Decipher score .62 high risk
    RALP scheduled 6/28/17

    Final pathology report 7/28/17
    Prostatic adenocarcinoma with mucinous differentiation
    Gleason score 4+3 involving both lobes limited to the prostate
    Percentage involved by tumor 5%
    EPE -, SVI -, LVI -, LN -, PNI+, Margins -
    Pathologic stage pT2 N0
    PSA 8/4/2017 <0.1
    PSA 10/27/2017 <0.1
    PSA 1/26/2018 <0.1
    PSA 4/27/2018 <0.1
    PSA 10/25/2018 <0.1
    PSA 2/12/2019 <0.1
    PSA 8/25/2019 <0.1
    PSA 11/27/2019 <.006

  4. #24
    Top User
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    Aug 2016
    Quote Originally Posted by derbyrobert View Post
    To another
    I don't quite understand what you mean by an 'age related change in his brain'.
    As we age we all have age related difficulties, and they affect us in various ways. Usually these can be understood by examining the premorbid personality.

    As to the connection between prostate and personality, we really don't know, and that is why I ask this forum to contribute to a fuller understanding.

    I asked for help on this site as it might help my brother and myself in our relationship.

    My original post was a personal one. There is no breach of medical confidentiality. Otherwise the site would not exist. We have to talk and share our experience with other people who are suffering.

    Under your criteria there would be no site to exchange this personal and valuable information which affects so many peoples lives.
    This site is one which people can honestly tell the community about how they feel about the most devastating condition they will ever have.

    Your inquiry is not a personal one. Using your brother's surname you posted very personal medical information about your brother and a negative mental health diagnosis of him under the guise of being a highly educated mental health professional.

    In the context of your behavior demonstrated here in reaction to his recent healthcare , his personality shift may be one directed to you and not universal.

    Having a prostatectomy is a sign of personal healthcare. This is a good thing. Wanting to build an airplane is a dream. This is a good thing.

    Going on a public website and revealing your brother's name and sharing he had a prostatectomy and a personality change is not a good thing.

    Since you're here, if you want to discuss your issue with boundaries we can, but it sounds like your brother has his issues handled.

    Your brother sounds normal and healthy. A little me time after a major medical event sounds just about right. Instead of diagnosing him with a personality change you might encourage him in his pursuit to build an airplane. Just sayin.
    Last edited by Another; 11-28-2017 at 12:47 PM.

  5. #25
    Top User garyi's Avatar
    Join Date
    Apr 2017
    Interesting topic. Robert...Another makes some very valid points you need to consider. From what you've posted. I think your angst is more about your relationship with your brother than how he chooses to handle his PCa journey. Hard for us to understand without you posting his stats, as most of us have.

    Aviation has been the core of my life. I suspect his construction project may be his method of focusing on something other than his PCa. Just may be very therapeutic for him.

    As for my physiological changes, my wife says I've become grouchy at times and cynical about some in the medical profession. As usual, she's correct.

    As a Clinical Psychologist, you must realize you can't control your brother, you bring your own baggage into the situation, and you're the last guy in the world to treat him.

    I suggest you empathetically and unjudgementally support him, subtly attempt to get him professional help IF he decides he wants it, and you take a step back to introspectively evaluate your motives. If you're looking for data for some clinical study, this ain't the way to get it.
    72...LUTS for the past 7 years
    TURP 2/16,
    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
    pT2 pNO pMn/a Grade Group 2
    PSA 0.32 to .54 over 3 months
    DCFPyl PET & ercMRI Scans - 11/17
    A one inch tumor still in prostate bed = failed surgery
    All met scans clear
    SRT, 2ADT, IMGT 70.2 Gys @1.8 per, completed 5/18
    Radiation Procitis, and Ulcerative Colitis flaired after 20 years
    PSA <.006 9/18, .054 11/18, .070 12/18, .067 2/19, .078 5/19, .074 7/19, .081 9/19, .116 11/19
    We'll see....what is not known dwarfs what is thought to be fact

  6. #26
    Newbie New User
    Join Date
    May 2018
    Hi Robert,
    I have searched the web as a loving very concerned daughter. My dad was diagnosed with metastatic prostate cancer 3 years ago. They put him on a hormonal implant, this we (his 4 Children) believe has totally changed his personality. My dad has always been a optimist and you would say that maybe the cancer has changed him. We as his children and also his sisters and brothers disagree (he is one of . My dad is very clever man he is an engineer and mechanic. Ran his own busines. We feel he is only now focused on one thing. He is very peculiar in his action and daily events. This behaviour became noticeable 8 months to a year after medication and diagnosis.
    I am not sure if this helps. All I can say is females are complex especially with their hormones and our mood swings, at the time of month and pregnancy more so.

    If you give a man female hormones then obviously this is going to have some psychological effect. For anyone to think it will not or does clearly isn’t a women. My dad cry’s and struggles with his emotions. He cry’s like me and doesn’t know why. This is what it’s like to be hormonal a lot women have this happen.

    My dad never cried, I only ever seen him cry once when his mum died.

    We let him get on in his own little world as long as he is happy. Yes it’s concerning, we don’t see him as the dad we knew. He is a completely different person. Still my dad, just different.

    Hope this helps

  7. #27
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012

    Anger, resentment, victimhood?

    What is his world view? It appears that he is not/has not dealt with his mortality well. Even accepting his mortality, he may have placed an inordinate priority on his potency - assuming that he is experiencing difficulties. Is he not demonstrating common anger, bottled up and which manifests itself in occasions of lack of empathy and compassion? He may be filled with thoughts of "why me?", and he may be ruminating on the unfairness of life. While this is within normal thought parameters, I would imagine that he feels like one of life's losers. As we see, cancer in the male reproductive system can have devastating psychological effects.

    I propose that, at some level, he is angry at being alive. Yet, one must be alive to be angry or have complaints. To those who feel singled out, I advise them to be glad that life is not fair. Why so? If life was fair, everyone we love would have cancer, not just us. Again, we often focus on life past rather than life present, and that is a trap. We cannot go back and we are declining as we age. I also advise cancer patients not to think about "getting back to my old life." First, we cannot. Second, let's roll the calendar back to pre-cancer days. Fine. What lay in our future?


    Why go there? We live life one day at a time, and even that is too much for some. He may be piling on himself. He alone holds the key to un-piling all that he has piled on, but he must be made aware (if he is not) of the profound change in him that negatively affects those whom he loves.
    05/08-07/08 Tumor appears behind left ear. Followed by serial medical incompetence on the parts of PCP, veteran oncologist and pathologist (misdiagnosis via non-diagnosis). Providential guidance to proper care at an NCI designated comprehensive cancer center.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 ("innumerable") tumors, bone marrow involvement.
    08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
    02/09 2) Relapse.
    03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, stopped for lack of response. Watch & Wait.
    09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
    10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
    10/25/14 Clinical trial of Alisertib/Failed - Progression.
    01/12/15 Belinostat resumed/Failed - Progression. 02/23/15
    02/24/15 Pralatrexate/Failed - Progression. 04/17/15
    04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Stage IV-B a second time. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TEC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
    06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
    BMB reveals 5) 26% blast cells of 20q Deletion Myelodysplastic Syndrome MDS), a bone marrow cancer and precursor to Acute Myeloid Leukemia.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Moderate intensity Haploidentical Allogeneic Stem Cell Transplant receiving my son's peripheral blood stem cells.
    07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
    07/23-08/03/15 Marrow producing zero blood cells. Fever. Hospitalized two weeks.
    08/04/15 Engraftment occurs, and blood cells are measurable - released from hospital.
    08/13/15 Day 26 - Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin Graft versus Host Disease arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    11/2015 Acute GvHD re-classified to Chronic Graft versus Host Disease.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun. Narrow-band UV-B therapy started, but discontinued for lack of response. One treatment of P-UVAreceived, but halted due to medication reaction.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    12/16 Type II Diabetes, Hypertension - both treatment-related.
    05/17 Extracorporeal Photopheresis (ECP) begun in attempt to control chronic Graft-versus-Host-Disease (cGvHD. 8 year old Power Port removed and replaced with Vortex (Smart) Port for ECP.
    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease. Cataracts from radiation and steroids.
    06/17 Trying various antibiotics in a search for tolerable prophylaxis.
    08/17 Bone marrow biopsy reveals the presence of 2% cells with 20q Deletion Myelodysplastic Syndrome, considered to be Minimum Residual Disease.
    12/17 Bone marrow biopsy reveals no abnormalities in the marrow - MDS eradicated. The steroid taper continues.
    01/18 Consented for Kadmon clinical trial.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    09/18 Due to refractory GvHD, Extracorporeal Photopheresis halted after 15 months ue to lack of additional benefit.
    10/18 I was withdrawn from the Kadmon KD025 clinical trial due to increasing fatigue/lack of benefit.
    11/18 Began therapy with Ruxolitinib (Jakafi), a JAK 1&2 inhibitor class drug. Started at half-dose due to concerns with drug interactions.
    11/19 MRI of brain reveals apparently benign frontal lobe tumor. Has the appearance of a cerebral cavernoma. Watch & wait on that.

    To date: 1 cancer, relapse, second relapse/mutation into 2 cancers, then 3 cancers simultaneously, 20 chemotherapy/GVHD drugs in 11 regimens (4 of them at least twice), 5 salvage regimens, 4 clinical trials, 5 post-transplant immuno-suppressant/modulatory drugs, the equivalent of 1,000 years of background radiation from 40+ CT series scans and about 24 PET scans.
    Both lymphoid and myeloid malignancies lend a certain symmetry to the hematological journey.

    Believing in the redemptive value of suffering makes all the difference.

  8. #28
    Experienced User
    Join Date
    Mar 2018
    Nmariec, welcome. Androgen deprivation therapy can dramatically change some men’s moods and personalities, independent but not exclusive of depression. Hopefully his primary care doc is also monitoring for other, more easily treatable causes ( other med side effects, low b12 , low thyroid, subtle head trauma, sleep deprivation, etc.)

    Some ( not all or most) men without cancer who become very hypogonadal also commonly develop mood swings and personality changes ( according to their wives and literature) that improve with T (in studies, compared with placebo), so no surprise.
    What is unclear is why some have great trouble, and others do not, with the hormonal changes, what makes some more vulnerable to personality changes from either PCA with ADT, or other causes of very low T. Same goes for women (like me) getting anti-estrogen therapy for breast cancer. There is a spectrum of response, but personality changes are not unusual. You could also consider having him see a neurologist or psychiatrist for full eval.

    This is one reason why some men who have PCA in long remission are now offered T by some brave urologists, as their and their wives’ lives are miserable, they are so cranky and moody, and the risk, if the prostate is long “gone” and PSA is undetectable is perceived minimal ( obviously not an option with mets). Most do not bother, or do not risk it.

    I wish you and your dad as best possible,
    as it is surely hard for you to see him change so much, and hard for him to cope.

  9. #29
    Experienced User
    Join Date
    Jan 2018
    Denis, I see you wrote this before I was on this forum. It’s a great read. At least 90% of it is how I felt too. Especially not hearing much the dr had to say after telling me I had PCa - even though I really suspected it would be he was going to tell me — and the part of bouncing from optimism from success stories to pessimism from the not so good stories. I’m still in that phase now.
    diagnosed at age 55
    PSA 4.5 (8-24-2017)
    Biopsy 12-18-2017
    7 of 12 malignant
    3+4=7 (70%) right apex
    3+4=7 (95%) right mid
    3+4=7 (20%) right base
    3+3=6 (20%) right lateral apex
    3+3=6 (30%) right later mid
    3+4=7 (90%) right later base
    3+3=6 (30%) left lateral mid
    RALP- May 14, 2018 - Johns Hopkins, Dr Pavlovich
    Post op pathology: Gleason 3+4=7, Grade Grp 2. 10% Pattern 4
    Max tumor dimension 18mm: pretty much in ALL zones but organ confined
    Lymph Nodes (3 right and 8 left) negative.
    Seminal Vesicle invasion: none Margins: negative
    Prostate= 52g, 4.3cm x 4.5 x 4.3
    Catheter out 9 days later May 23, 2018
    6 week PSA = 0.00 (July 7, 2018
    5 month PSA = 0.00 (Oct 15, 2018
    7.5 month PSA- <0.014 (different lab this time - Jan 3, 2019) 9.5 month PSA <0.014 (Mar 7, 2019)
    10 month ED still present. Trimix works.

  10. #30
    Newbie New User
    Join Date
    Jan 2018
    Yes, my husbands personality has changed also. Colder, less caring, disconnected + angry. I don’t think it is psycological, more biological due to changes in hormones and the like. Very sad to witness.


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