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Thread: Making loved ones understand...

  1. #1
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    Making loved ones understand...

    I am a 60 yro WM widowed Vet who has had an increasing PSA for two yrs now. It is now at 14.2 and my immunologist at the VA is pushing me to have a biopsy. I am one of the oldest living long-term survivors of HIV in the US. My immunologist acts more or less as my primary physician.

    I am having a hard time getting my family and the few friends I have to accept my decision to not have a biopsy because if I do have prostate cancer I have no intention of treating it. I was widowed in 2013 when my triad partners died 5 months apart. The younger one died of colon cancer 5 mths after his initial diagnosis. Losing them has made me the last man standing three times in my lifetime. By 1985 everyone I came out with in high school was dead. In 1992 everyone my own age I had met upon moving to Tx was dead. When I lost my husbands in 2013 everyone we had known had either moved away or died.

    I spent 2016 and 17 homeless. I have no close family and only one or two ppl I would truly call friends. I worked with cancer patients in radiation oncology at Presbyterian hospital in Denver for a year after I left the service. I know what is involved in treating and beating cancer. And I don't have a support group to get me through it. The last few years have taken their toll on me. I am blind in one eye because of an assault. I have lost everything I owned when I became homeless. I don't have the fight left in me to face this alone. I simply want to allow the disease to run its course and when the pain becomes unbearable I will take measures to die with some dignity. I won't allow myself to be forced by the medical profession to die the way my loved ones w cancer were forced to. Taking chemo and radiation right up until tge end. Being sicker from the treatment than the disease. Losing my masculinity to hormone therapy.

    I want to spend time with those who care for me that is quality time. But those in my life are telling me what I feel and what I want to do is wrong. How can I help them see what I have chosen is better than what I face by trying to beat this.

  2. #2
    Hi elwinb and Welcome to the Forum! I'm very sorry you're so down right now, but know that you have a support group right here, and can probably find an additional one that you can attend near you as well.

    Finding out if you have cancer and, if so, learning more about its nature with a biopsy is not a signed contract to treat anything. But you are only 60 now, and a little action, if required, could ensure not years, but decades more of life!* The loved ones you lost to cancer and helped at the hospital were ravaged by the severe metabolic decline and toll that metastatic cancer takes. Fortunately for us, prostate cancer (PCa) is usually very slow-moving, and right now you don't even have a diagnosis, which requires a biopsy. Is there a fair chance that with your PSA it's prostate cancer? Yes. Some men are very luck and have a low-grade PCa that can be monitored but doesn't need treatment; others do need treatment, have a variety of treatment choices, and have plenty of time to choose one.

    I personally elected surgery for my high-grade PCa, and now have full urinary continence and a (still) happy sex life (with Viagra, which I started taking before surgery anyway because of an enlarged prostate). Many of the men who choose one of several different types of radiation therapy knock their cancer out with some painless sessions or have some seed implanted and go on their merry way. If you do have PCa, any possible decision about hormone therapy is likely a long way off, can often be done intermittently, and it is just one of different treatment approaches.

    IMO, your smartest course of action is to see IF you do have cancer and can be one of the majority, who either get rid of it or ensure that they will manage it with their docs and eventually die from some other cause. But even the most treatable cases of prostate cancer can wind up as devastating metastatic disease if left untreated.

    Now is the time to act and take advantage of the enormous advantage that we guys have with prostate cancer: early diagnosis. This is a big deal that other cancers don't usually afford. We can treat the cancer before it even begins to affect us and often ensure it never does. You're such a trooper and have fought so hard to this point -- don't throw in the towel before what may be a very easy and probably one-round fight has even begun!

    Stick around, chat with us, learn some more, and make some new friends

    All the best,

    Djin
    ______________
    *I just wanted to repeat that: decades more of life.
    Last edited by DjinTonic; 07-10-2019 at 12:48 PM.
    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

  3. #3
    Top User
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    You can't and it's not your responsibility to convince others or explain your choices. Trying to change the thoughts of others is another layer of angst on those you already have in place.

    You do what you have done here. You share your story. No need to do more. I get it. Prostate cancer is treatable if detected and treated early. If uncared for it is a long and painful death. Your choice to use it to end your life fits the way you think and see the world. There is a perfection and symmetry to it.

    Where you may be struggling is your use of words. In a language free of judgment, your choice to end your life in this way is not wrong nor is it better. It is. That's all. There is nothing noble or righteous in choosing to treat this disease or not treat it. It is a choice in what you want for yourself. In a world that conspires to give us what we want there is no surprise when it does or when we choose it.

    In honesty, it is not the prostate cancer that will end your life. It is your choice that will end your life. Prostate cancer is treatable and managable. Much more so than HIV or the pain and suffering of losing loved ones. You have a multitude of reasons for any choice you want to make. We all do. You don't need any of them. It's a choice, not a debate.

    The answer you want for your friends and family is not to convince or explain or conjole or bully them into accepting something they do not want to accept, but to share the truth. This is what you want. Simple.

    You may have to repeat it often as they argue with you trying to convince you or conjole you or bully you. Do not get hooked into the conversation. Simply share what you know. This is what you want for yourself. The universe will conspire to give you what you want. Just be honest.

    For me, I wanted a few more years and I'm getting them. When my time does come what I want for myself is to face it with gratitude. My experience has been it will be however I want it to be. I find freedom and power in it. That's my story. We each get to tell our own story and we get to tell it however we want. It is an amazing world.
    Last edited by Another; 07-10-2019 at 12:48 PM.

  4. #4
    I don't think you're thinking straight.

    If you want to kill yourself on purpose that is a different discussion. However, expecting those that love you to accept your long, drawn out suicide isn't logical.

    I would suggest that you get some counseling so you can think straight. Pca death isn't fast and it isn't pleasurable.

    Pca cancer and treatment (even if surgery and radiation are requried) are far different than what you've probably experienced with other cancer types. The surgery isn't terrible and recovery is a life inconvenience. Radiation doesn't produce the same sicknesses as chemo. So you really don't have to have a support team....it's helpful but the doctors can get you what you need, that's if you even have cancer.

    What a sad story yours would be to survive HIV and surrender to something that was most likely treatable.

    Good luck.
    Last edited by IceStationZebra; 07-10-2019 at 02:20 PM.

  5. #5
    Hi elwinb1! Welcome to The Forum! Glad that you have found us and we assure you that you will receive lots of support.

    Very sorry to read of the multiple bad hands you have been dealt. At this time point, prostate cancer (PCa) is not one of them. Biopsy is currently the only way to diagnose localized PCa. If you do not want to undergo a biopsy, ask the VA about having a mp 3T MRI. This technology can identify areas of suspicion and assign a risk category.

    Most PCa that is detected early is curable. The majority of low risk PCa does not require immediate treatment. There are multiple different treatment options available for most early diagnosed PCa.

    Re "I worked with cancer patients in radiation oncology at Presbyterian hospital in Denver for a year after I left the service. I know what is involved in treating and beating cancer. .."
    - What year was this?
    Radiation technologies back then were borderline "barbaric" compared to the advanced technologies of today. So that is an invalid point of arguement.

    Re:
    - I have no close family and only one or two ppl I would truly call friends...
    &
    - I want to spend time with those who care for me that is quality time..

    If you care a lick about them you had better excuse them from helping you in your final months of life - again if you truly care about them. You do not want to die from PCa. You don't want to subject anyone to caring for you while dying from PCa. If this is the eventuality, be sure to set up your hospice care arrangements well in advance.

    Re "Losing my masculinity to hormone therapy." There is a crude mantra on our Forum: "Erections can not bring a corpse much pleasure!"

    Most fortunately there is a very simple alternative to electing Death By PCa. Start by getting an appointment with a URO MD and let him/her navigate the assessment process. IF PCa is discovered, it may well be easily cured. This will provide a great opportunity for you live well, help others in similar situations and contribute to the good of mankind.

    I sense that you really do care!

    Be a HERO!

    MF
    Last edited by Michael F; 07-10-2019 at 03:37 PM.
    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

  6. #6
    Top User garyi's Avatar
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    Quote Originally Posted by elwinb1 View Post
    .....But those in my life are telling me what I feel and what I want to do is wrong. How can I help them see what I have chosen is better than what I face by trying to beat this.
    You can't, because they care for you, and the path you're considering probably isn't "better". The Lord will take us all in His own good time.

    As my brothers have pointed out, you most likely have many relatively easy solutions to PCa. At least try investigating them before giving up. From another Vet, praying for you.
    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
    We'll see....what is not known dwarfs what is thought to be fact

  7. #7
    Moderator Top User HighlanderCFH's Avatar
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    Quote Originally Posted by elwinb1 View Post
    I don't have the fight left in me to face this alone. I simply want to allow the disease to run its course and when the pain becomes unbearable I will take measures to die with some dignity.
    Remember that you are NOT fighting this alone. You have a huge band of forum brothers that you just joined up with -- and we will be here with you every step of the way. Your rising PSA is not an automatic death sentence, so I would suggest having the biopsy and then we'll see where you stand from there.

    You can count on us to support you in whatever you decide (even if we offer some "tough love" along the way) -- so please let US count on YOU to give yourself the best chance to have a long, happy life ahead of you.

    Hang in there -- and thank you for your service!
    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.

  8. #8
    I respect your point of view. I think the choices you placed before you might not be accurate, however. I had laparoscopic prostate surgery with a Gleason 8 15 years ago. I did have a rough 2 days but I was mowing my grass a week later.

    I had salvage radiation 5 years later. I had few side-effects if any that I would have even noticed if I had not been looking for them (fell asleep while watching TV after lunch. That was about it).

    15 years after original surgery I still have prostate cancer and I am symptom-free for now. You might not need either of those treatments much less both. If you want to die that is one thing, but if you think this is a fight like chemo etc, it is not. You draw the line where you decide to draw the line. There may be new close friends in your future. There may be more days where your wisdom and friendship help others.

    As has been said, a biopsy might mean watchful waiting, or a round of radiation that you fit in your daily routine. That might be all you ever face with this. If it comes back you can decide at any time what your next step is. Getting a biopsy does not take any options from you. It lays more options at your feet.
    History: age 53 It took 3 biopsies (34 cores) to find 2 cores 4+4 Gleason 8
    Lap RP at MSKCC Apr 2004, age 54 All neg margins, nodes & structures. (T2a).
    Post RP PSA: <.1 until Feb, 08 (46 mos) PSA 0.1 - I then got sensitive tests -> 2008: Feb 0.06,
    May-08 0.09 - Jun-08 0.10, - Aug-08 0.10, - Nov-08 0.15
    SRT Dec-2008 ---Post SRT PSA 2009, Feb-09 0.10, May-09 0.09, Aug-09 0.06, Dec-09 .04, - 2010 Mar-09 0.04, 2011 .02, 2012 .02,
    STARTED UP Feb 2014-0.06, Jul-2015 0.10, Oct-2015 0.10, Feb-2016 0.15, Jun-2016 0.17, Dec-2016 0.25, Jan-2019 0.74, Jun -2019 0.72
    Aug 2018 Auximin scan - nothing
    Had an inflatable penile implant 2018 for ED. Best decision ever https://www.peyroniesforum.net/index...oard,56.0.html

  9. #9
    Quote Originally Posted by Hawk View Post
    I respect your point of view. I think the choices you placed before you might not be accurate, however. I had laparoscopic prostate surgery with a Gleason 8 15 years ago. I did have a rough 2 days but I was mowing my grass a week later.

    I had salvage radiation 5 years later. I had few side-effects if any that I would have even noticed if I had not been looking for them (fell asleep while watching TV after lunch. That was about it).

    15 years after original surgery I still have prostate cancer and I am symptom-free for now. You might not need either of those treatments much less both. If you want to die that is one thing, but if you think this is a fight like chemo etc, it is not. You draw the line where you decide to draw the line. There may be new close friends in your future. There may be more days where your wisdom and friendship help others.

    As has been said, a biopsy might mean watchful waiting, or a round of radiation that you fit in your daily routine. That be all you ever face with this. If it comes back you can decide at any time what your next step is. Getting a biopsy does not take any options from you. It lays more options at your feet.
    Well said.

  10. #10
    Top User garyi's Avatar
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    An interesting perspective: https://youtu.be/JV4ekU5u5bs
    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
    We'll see....what is not known dwarfs what is thought to be fact

 

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