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Thread: Lost my Dad 10 days ago. He was 67

  1. #1
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    Lost my Dad 10 days ago. He was 67

    I'm not posting this for sympathy. I'm posting this so that the next person in a situation like me might have an idea of what to expect. Because I was incredibly unprepared and had a hospital full of doctor's who promised that his prognosis was good.

    Just a little background. My dad had some kind of prostate procedure May of 2012. He was having difficulty urinating and they did some kind of procedure that was supposed to help with that. After the procedure he still had issues and twice had to go in and have a catheter put in to allow him to urinate. He continued to be treated by his urologist and his primary care physician. In August of 2012 he had his annual physical. I'm presuming that his PSA was checked since he was 66 at the time.

    In November after Thanksgiving my dad started to not feel well. It was almost as though he had the flu. He was achy. He had trouble breathing. He just wasn't well. For a month the doctor did tests and discovered a blood clot in his lungs. They treated him with a blood thinner. I think it started with a z. At this point his PCP left the country to do a service project. My dad was seeing another doctor in that office. This doctor told him that often times a blood clot in the lungs was a sign of cancer elsewhere in the body. He continued on the blood thinner. They drew lab after lab. He continued to get worse. In January I took him to the doctor. He was struggling to breathe. He couldn't get air. He had pain in his hips and in his lower back. (This is a man who doesn't ever admit to pain---like most of you I'm guessing). They put him on oxygen. They did more labs, a chest xray. They did a cat scan. Always looking above his waist because of his breathing issues. He had lost almost 40 pounds in three months.

    On February 21st (on his third visit to the ER in a month) he was admitted. Praise God! The next morning I was informed by a pulmonologist that my dad had hemolytic anemia. They weren't sure why. He said they would probably have to do a bone marrow biopsy and a muscle biopsy. The next day they did the bone marrow biopsy (which incidentally hurts, even superdad commented on how painful it was). The next morning we were visited by the oncologist. She said she had good news that it wasn't leukemia or lymphoma but that it was cancer and it had already contaminated 90% of his bone marrow. She said it looked to be prostate cancer because his PSA was 164 (at this point I had no idea what normal was) but she did say it was off the chart. They then wanted to do an MRI to look at his liver and his prostate. She told us the prognosis was good. That she had seen worse pull out and survive.

    They did the MRI. They confirmed prostate cancer. They did this by stains from the bone marrow. They told us that often times you can identify the cancers origin by the cancer cells. My dad's cell were so mutated that they couldn't tell what cells they had originally been. My dad continued to struggle to breathe and have pain in his back and hips. He was moved to ICU. They began hormone interruption therapy with casodex and lupron. They told us things looked good. An 85% survival rate. They did a bone scan. They said that all of his body was covered with tumors. His bones were all infected. They moved him out of ICU.

    He continued to not be able to breathe. He was on 15 liters and couldn't keep his oxygen at 90%. The doctor decided that we had to see what the problem was in his lungs. Back to ICU. They put him on the ventilator and did a bronchoscopy. They wanted to do a lung biopsy but my stepmom refused to give consent. They had been treating him for pneumonia with no results for days. All the scope could really do was look for bacteria or infection. They found none. He successfully came off the ventilator two days later. Praise God again.

    Still he struggled to breath. Now his liver numbers were doubling each day. I was searching on google and found that prostate cancer metastasizes in the bones, lungs and liver. I asked the oncologist. They told me no, that was incorrect. Prostate cancer doesn't act like that. They put him on a bipap machine. His kidneys were now failing. His liver was shutting down and so were his kidneys. The doctor told us that we had options. We could put him back on the ventilator and aggressively treat him. OR we could make him comfortable. I told the doctor I needed a number. Best case scenario, we aggressively treat, what are we looking at. He told me 2-3 days. WHAT??? That's an option?!

    My stepmom opted to make him comfortable and transfer to the hospice floor. He never made it there. He died quietly that evening. Two weeks after he was admitted to the hospital.

    All along I had false hope despite what I would read on the internet. I had doctors telling me how good things looked. He was going to make it. Not one doctor in that hospital EVER even mentioned that he may not go home.

    I hope perhaps that this helps prepare someone. Don't give up hope, but don't deny what could happen either. I wish each of you health. I will continually pray for a cure for prostate cancer. May God bless you.

  2. #2
    Hello.
    You would think they would check PSA before doing a prostate procedure . Some of these procedures take prostate samples and some do not. e.g. laser
    When prostate cancer is extensive in the bones, then the prognosis is often not good.
    Did he get hormone therapy? Where are you from?
    Early detection through PSA tests and biopsies might have produced a longer life. Good luck.
    DOB Sept. 1947. Prostate cancer Gleason 7 (3+4), PSA 5 in Oct 2010. Cryoablation Jan. 2011. Had some complications.
    Experienced nocturia, irritable bladder summer 2011. "Agent Orange"compensation from VA Oct 2011.
    PSA: .05 01/26/2012, .06 6/26/2012, .04 12/24/2012, .04 6/26/13, .05 1/27/14, .05 10/21/14, .04 10/15
    I am eating vegan mostly plus a little fish. Take some supplements.
    (Any advice given is the personal opinion of a layman and is not intended to replace the advice of a health professional.)

  3. #3
    Senior User
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    What angers me about your story is the fact that the doctors kept telling you he would recover, be OK. He was obviously a very sick man and had so many objective signs that I cannot believe that his doctors mis-diagnosed him. I think they probably DID know he was terminally ill with (probably) prostate cancer and felt they were sparing the patient and family from the knowledge that he was going to die an uncomfortable death. I think sometimes doctors are not prepared for the death of their patients and they (the doctors) have a poor time coping with how to interact with the dying patient and their family. If I were you, I'd be severely P.O.ed at his doctors for not being honest with you about what was happening.

    I am currently near the spot where your father's story began. My PSA in January was 155 and, suddenly, after being virtually asymptomatic from my cancer for 4 plus years, I began having severe back and rib pain. CT, PET scans confirmed my cancer has invaded my spine, pelvis, ribs, and cranium. I just finished a 10 day course of radiation to T10-L3 to knock some of that pain back. Just this morning, I suspect I broke a rib on the left side of my ribcage by foolishly engaging in a dangerous activity: reaching behind me to wash my butt. I have had very frank discussions with my primary care doctor and rad onc doctor. We are on the same page. Pain relief until I pull the plug, that's it. I'm very appreciative of the fact they understand where I'm at and what I will and will not do. They have been very supportive of my decisions so far. I only hope they will also support my wish for euthanasia when I'm ready to go.

    Death is part of life, something we all will do. I firmly believe that we should have the means to die with dignity. That said, my heart goes out to you for the passing of your father. I don't know if YOU were prepared for him to go or not, but I hope you find some peace now.

    mkane09
    PSA 6.48, biopsy Gleason 3+4, robotic prostatectomy 9/17/08, pathology Gleason 4+5, pathologic stage T2c, positive margins, SRT completed May 22, 2009. 1st post-radiation PSA, 8-4-09, <0.06. 2nd post-radiation PSA 12-22-09 <0.06. PSA, July 23, 2010: <0.06. PSA, January 10, 2012: 13.90. Re-test, February 6, 2012: 16.47. April 6, 2012: 25.6. PSA, May 2, 2012: 37.74. PSA, May 27, 2012: 37.4. PSA, June 17, 2012: 51. PSA, Sept 27, 2012: 110.24. PSA, January 28, 155. May, 2013, Well, you get the idea...

  4. #4
    My heart goes out to you and your family. Our condolences to you, your family and may your Dad rest in peace.

    I am very surprised and saddened with what was happening to your Dad. I am not a doctor but there seemed to be many occasions, even before his procedure when they could find out more about his situation instead of letting things slide. It started with his doctor getting him regular PSA testings and properly examining his symptoms to eliminate cancer before recommending the procedure. Also, when physicians do any prostate procedures like TURP or laser to relieve urinary symptoms from an enlarged prostate, they usually do a PSA test and that should detect his high PSA and sent him to a biopsy. And if they performed TURP, they always sent the sample to a pathologist and that would most likely show caner.

    Thank you for sharing your story as this will help those that come after to be more vigilant.
    PCa Dx 2010 at 65. PSA increased from 2.5 in 2000 to 10.7 in 2010. Four biopsies in 6 years. Final biopsy in 2010: 1 of 12 cores 5% cancer, G6
    CT, bone scans & MRI all negative
    Da Vinci 8/10; nerve sparing, catheter out in 7 days; no incontinence, no ED
    Post Op Pathology pT2N0Mx: organ confined; negative margins; lymph nodes & seminal vesicle not involved but PNI present; cancer extensive within prostate, multifocal G 3+3 and tertiary G 4
    Infected lymphocele diagnosed and treated in 2014, 4 yrs after RALP
    PSA <.1 for the past 6 years.

  5. #5
    Quote Originally Posted by mkane09 View Post
    Death is part of life, something we all will do. I firmly believe that we should have the means to die with dignity. mkane09
    mkane09

    You are a wise and courageous man. I hope you will be around a long time and keep providing words of wisdom to us all.

    Good luck to you.

  6. #6
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    Thank you all so much for your condolences. It has been a horribly difficult time. But I prayed for two weeks for my dad to either get well or for him not to suffer. He didn't suffer long--at least while he was in the hospital.

    I am in Denver, CO. My father was in Greeley, CO at North Colorado Medical Center.

    Of course I am angry with his doctors. Someone, somewhere dropped the ball. I understand that he had a very aggressive form of prostate cancer but I just can't believe that he could have possibly had a normal PSA at his physical in August. And even if he did, WHY didn't they check him again when he presented with symptoms. I can only assume that my dad had so many issues with his lungs because he had smoked for many years. He had been smoke free for the last almost 20 years, but he probably smoked for close to 30 years. I so wish that the doctors had been honest with us. I wish that they had not tempted us with performing more tests and offering hope. The hormone treatment was the only treatment that they gave him. They talked of giving him something to strengthen his bones but decided that he wasn't healthy enough for the injection.

    mkane09--I will include you in my prayers. I believe that your doctors will provide for your wishes. I think that until my dad's liver began to fail that the doctors may have actually held out hope. I read some posts on here of people who were almost as bad as my dad and had been given better news. Once his liver began failing they should have talked to us. Instead my google research was confirmed. I agree that you are a wise and courageous man. I hope that you do not have to suffer more than you already have. God bless you.

  7. #7
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    Mamakarne, I am in Loveland, just down the road from you. Sorry for your loss. My father died 9 years ago from pancreatic cancer. he was at the Mayo clinic in Minnesota. My dad or us were never told that he would not live. Looking back, they knew he was going to die when the let me take him back home in South Dakota but never told us that. He lived 6 weeks after being discharged from Mayo, 5 of those weeks in a nursing home after 1 week in the hospital. He was home for 1 day.
    June PSA 7.3
    July PSA 7.4
    Biopsy mid September, 3 out of 12 cancer. 2 were 30%, 1 was 60%. Gleason 3+4=7
    DaVinci Robotic surgery Nov 12th.
    Nov 20th followup, no cancer outside prostate, cathiter removed.

  8. #8
    Only the BEST doctors have the courage to look you in the eye and tell you to get your affairs in order....Doctors all seem to head for the exits, leaving the task to one of the nurses..If you don't want to die under hospice care, a morphine pump clicking away, you need to take the necessary steps NOW while you are still able to...
    PSA at age 55: 3.5, DRE negative.
    65: 8.5, DRE " normal", biopsy, 12 core, negative...
    66 9.0 DRE "normal", BPH, (Proscar)
    67 4.5 DRE "normal" second biopsy, negative.
    67.5 5.6, DRE "normal" U-doc worried..
    age 68, 7.0, third biopsy (June 2010) positive for cancer in 4 cores, 2 cores Gleason 6, one core Gleason 7. one core Gleason 9. RALP on Sept. 3, 2010, Positive margin, post-op PSA. 0.9, SRT , HT. Feb.2011 PSA <0.1 Oct 2011 <0.1 Feb 2012 <0.01 Sept 2012 0.8 June 2013 1.1, Casodex added, PSA 0.04 10/2013. PSA 0.32 1/14. On 6/14 PSA 0.4, "T"-5. 10/14 PSA 0.6, T-11. 1/2015 PSA 0.106. 4/15. 0.4, 9/15 1.4, 3/16 Zytiga, 0.04, 5/17 1.4 may switch to Xtandi. 3/1/2018. PSA now 54, chemo will begin next month. 7/19, PSA 2000 starting Lu-177 tomorrow..77 years old now..

  9. #9
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    how does that work with Hospice? I am thinking that for my father since he has aggressive prostate SMALL CELL CANCER. its so hard to think how they will suffer ? will there be in pain ?

  10. #10
    torehb:

    NOTE: The last post on this thread was more than 4 years ago. You may not receive a reply.
    LUNG
    Age: 71 -- 12/2013 - Cat Scan sees new irregular 1.8 cm nodule in right middle lobe.
    3/13/14 - PET Cat Scan confirms presence of same nodule -- same size. Nodule lights up indicating likelihood of lung cancer -- Location not conducive to biopsy.
    3/17/14 - Three top doctors say it MUST come out via a wedge re-section. If cancerous, the entire right middle lobe must be surgically removed.
    6/13/14 - Nodule shrank by 1/3. Not cancer. Surgery cancelled. Next scan 9/14. Nodule "resolved" - gone.

    PROSTATE
    Age: 67 -- 2/2010 - PSA: 4.05
    8/2010 - PSA: 4.95
    9/2010 - Biopsy - 2 out of 12 cores positive - Gleason: 3+4=7
    11/8/2010 - DaVinci RALP - small positive margin - was told it was meaningless.
    2/11 - PSA: 0.02; 8/11 - PSA: 0.04; 2/12 - PSA: 0.06; 8/12 - PSA: 0.08; 2/13 - PSA: 0.11; 5/13 - PSA: 0.16 - referred to oncology radiologist.
    9/2013: 40 sessions of IMRT salvage radiation completed.
    1/14, 4/14, 7/14, 10/14, 1/15, 8/15, 3/16, 8/16, 3/17 - All PSA: 0.00

 

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