Agent orange Gleason 9 open surgery prepubic radical prostatectomy and pelvic lymph node dissection

rogerdlama48@gmail.com
rogerdlama48@gmail.com Member Posts: 11 Member

I'm sorry I don't know if this is properly way to seek information from other prostate cancer members.

It doesn't matter how old you are or if you are a southern Vietnam veteran exposed to agent orange herbicides.

I am 68 / 69 December 12.

My little dog Buddy, thirteen half years old Westie died December fifth after having his spleen and large spleen tumor removed and I have been devastated and having to live alone again since having Buddy for almost thirteen years.

Then I had a biopsy at the Wright Patterson Air Force Base Hospital clinic in January 2017 & I was told that I have Gleason score 9 & very aggressive cancer and it needed to be removed as soon as possible. I was hoping for enlarged prostate gland.

I guess I panicked and then had cat scan and bone scan and I was told that they didn't see anything and didn't think that it has spread.

My PSA test in October was only 4.9 & then the urologist at the Chillicothe VA hospital felt lump and another PSA test was 5 .

That's actually before biopsy and why I was sent to the Wright Patterson Air Force Base Hospital urologist clinic.

Bad for me because I didn't know anything and told the surgeon a Lt colonel in the air force that I would do whatever he thought would be best.

So I had open surgery removed my prostate gland and pelvic lymph nodes March 6 2017 and I had blood clots and fluid in my lungs. They just received the davinci robotic surgery machine two months after my open surgery and my oncologist told me that he could hardly believe that I had open surgery and  I think robotic surgery would have been better for me because I had twenty staples in the incision and blood clots and long time recovery because I have emphysema and copd and not healthy as most people having surgery i

I thought he removed all the cancer and I ended up being there for ten days and then transferred to the Dayton VA Medical Center hospital and then I finally got sick of being in the hospital and I was still having problems with my bladder and wearing adult diapers and lots of peeing my pants and I still do.

The surgeon told me that I would still need to have radiation therapy and I found out after being discharged and starting the radiation therapy at the FMC Lancaster radiation Oncology Clinic in my hometown that I need the radiation therapy Monday through Friday for seven weeks because the cancer was so aggressive and I have cancer in the connecting tissue of my bladder.

The nerves are gone and the sphincter was cut into .

I have Monday my last radiation therapy.

I'm sorry I lost track of my words and try to stop and just say that I asked my oncologist how will I know if I'm cancer free he said only by the way you feel. I asked the odds of radiation therapy curing or helping me survive longer he said fifty fifty.

He said I be okay as long as cancer doesn't spread to bones and other organs. Another fifty fifty about stopping cancer from spreading.

That's no answer except for they don't know and have no way of knowing.

I don't know.

I saw the other Oncologist last week when mine was off and he said that I should never had had surgery and I should have treatment of hormone and radiation therapy instead and I wouldn't have any problems with incontinence and having painful urinating all the time blood in urine my penis is pulled up inside me and I can't get it out to pee correctly and pee my pants and it is miserable with out my prostate and not having strength and energy to do anything and my copd and emphysema makes it very difficult and I have lots of difficulty being by myself and can't hardly do anything to clean house and keep myself bathed and trying to cook and doing dishes and laundry and I just have hard time and being so alone and depressed and I try to spend every hour in bed and I can't get good sleep because I have to get up and go to bathroom sometimes two three times every hour or two and I can't hardly breathe each time when I get up and especially when I lay back down and it feels terrible and the more I lay in bed the worse I feel and it is making my neck and left shoulder and arm hurt and my whole left torso feels bad and I just can't seem to force myself to get up.

Sorry I guess I'm a terrible person who can't do anything.

 

Comments

  • VascodaGama
    VascodaGama Member Posts: 3,638 Member
    Be positive, you are not alone

    Roger,

    I am sorry for the situation you are in. Losing the best friend may have been hard to accept and now, alone as you say, things are not exactly as you imagine it to be. Nevertheless you are not alone. Many guys have confronted similar situations, managed to overcome them and found means to survive, even if their quality of living has deteriorate. You need to be strong and start learning how to accept your newer you.

    From your descriptions I believe you done the best. Open surgery is not worse than a robotic one. The outcome would not alter in terms of the need for the following radiotherapy. Gleason 9 cases are typical for metastases and these are hard to locate with the traditional imaging equipments like CT, MRI or Bone scan. Probably you should have been directed to radiation treatment at the beginning. In any case, the surgery removed the bigger tumor (the whole gland) so that the possibility in the success of the radiation is higher. You need to wait and check your PSA periodically.

    Treatments for prostate cancer are never free of consequences. Their side effects can be nasty and one is subjected to the loss of quality living. Incontinence, colitis, ED and fatigue are common results. One needs to treat them the best one can do. The buried penis  is also typical in surgeries because they dissect about one inch of its length (the portion inside the prostate). You need to pull it constantly to avoid the issue or can get operated (cut inside muscles securing it in) to free it out. The incontinence can resolve itself with time if the sphincter starts using its tiny muscles (if these still exist). You can also look into apparatus like the AUS described in past threads (https://csn.cancer.org/node/299789).

    Radiotherapy does cause fatigue that can be adjusted with a change in life tactics and physical exercises. Diets also influence the way we feel so that you could start giving preferences to certain foods eliminating the ones prejudicial. Afternoon naps and fewer liquids at evening may improve your sleeping. I recommend you to read past threads where you will find the opinions of the many confronting similar symptoms. Here is a link to diets;

    http://cancer.ucsf.edu/_docs/crc/nutrition_prostate.pdf

    I wonder your age. Probably you could find another "Best Friend" to give you peace of mind. Mine is a 12 years old Portuguese pointer also very special to me. I know I will experience a similar circumstance one day. Better not to think about it. Be positive. You will find a way to overcome the problem.

    Welcome to the board.

    Best wishes,

    VGama 

  • GeorgeG
    GeorgeG Member Posts: 152
    edited July 2017 #3
    VG has given you some good

    VG has given you some good insight. I am also sorry that you have been struggling with your journey and the recent loss of your companion. Thank you for your service to our country. I know that you deserve support and some peace in your journey not punishment, fear or hopelessness. You already did something positive for yourself coming here for help. We have all shared your struggle and have all had to face the unknown which can be a challenge. This is important and serious but don't let this define you. Let strength and courage define you. We already know that you are a fighter.

    i had the choice between open and robotic surgery and chose open and do not regret it. I also had some issues with my penis retracting but it has gotten better. It is important to get blood to that area with manipulation, drugs, or shots. Hopefully that will help you.. Do excercises to strengthen your muscles. Kegels, ab excercises. I leaked like crazy after surgery. I even peed on my wife's head once when she was tying my shoes in the first week. I am now pad free after 9 months. it takes up to 18 months to fully recover your urinary control potential. They completely remove the original bladder control valve and other muscles can completely replace that function.

    i too now need radiation and ADT because surgery failed to completely remove my cancer. I had a lower Gleason score but my disease had escaped the prostate. 50% is not because they don't know, it's because they do know and those are our odds. Please focus on the fact that you have a significant chance of cure or significant delay in major symptoms. 50% means a 50% chance of success. We know that you do not have significant metastatic disease, same as me. That's good news. I will finished radiation and ADT at the end of October and we will start testing PSA again on January 1st to see where we are.

    if the current approach fails for either of us then there are many bullets left in the chamber. Cancer is up against some very strong spirits on this forum, including you. 

    Keep up your questions, we will help you work the problem. Stay strong brother, we still here so we still have options. That's the good news.

    i hope that Max will weigh in, he has been fighting the good fight and is still here with all of us kicking butt and living life.

    oh and don't forget to ring the bell after your last radiation treatment. If they don't have a bell at your clinic let me know and I'll ring twice on August 31.

     

    george

     

  • Grinder
    Grinder Member Posts: 487 Member

    The guys on this forum have been through it all, and experienced it first hand, so they know what they are talking about. You will discover, like the rest of us have, that you can confidently face your circumstances armed with as much information to make the best decision for yourself that will greatly improve your odds. 

    I don't want these guys to get big heads, but they will be an inestimable assistance to you as you give them the details of your circumstance.

    Read their recommendations, keep them up to date, and read farther back into the archives for even more information. You will find that many have been where you are, and many many of them are way ahead of the game. That should help relieve the feeling of helplessness and you can start feeling confident that there is a light at the end of the tunnel and hold on to hope. And reading about others plight and how many managed to overcome similar circumstance will help take the focus off your immediate distress. 

    You certainly want to take your mind off things you can't control and the negative emotions you are experiencing. If you focus your mind on what you fear, your emotional state will interfere with your immune system. Rather focus your mind on what will improve your emotional state. It takes a bit of discipline, but is well with it

    Start by simply making your mind blank. Then as soon as you a start thinking any single thought again, blank it out again. Then once you have gotten to the point you can keep the negative thought from creating a negative emotion, focus on something positive. Reading an inspirational book, the Bible especially, or think about getting a new puppy someday. STOP! Don't think about the pet you had and how you miss him, but think about what a blessing he was while you had him. And be grateful for that. Then be grateful for the pet you are going to have. Don't think about how hopeless your circumstance is, but be grateful you found this forum where many people are here to give you a treasure trove of advice and help you through this.

    Keep reading, there's more good news ahead and in these archives as well. I know I am grateful for these guys and the everyone who contributed to this forum past present and future.

  • FinishingGrace
    FinishingGrace Member Posts: 82
    Call American Cancer Society

    Hi Roger,B

    I suggest giving them a call as soon as possible. I am helping a neighbor navigate his treatment and advocate for his care. The ACS has arranged rides for him for free on numerous occassions when I was unable to go to appointments with him. They offer other support services and have been lovely and kind. I hope they can be a source of support and help for you as well.

    Praying for you,

    Grace

  • rogerdlama48@gmail.com
    rogerdlama48@gmail.com Member Posts: 11 Member

    Be positive, you are not alone

    Roger,

    I am sorry for the situation you are in. Losing the best friend may have been hard to accept and now, alone as you say, things are not exactly as you imagine it to be. Nevertheless you are not alone. Many guys have confronted similar situations, managed to overcome them and found means to survive, even if their quality of living has deteriorate. You need to be strong and start learning how to accept your newer you.

    From your descriptions I believe you done the best. Open surgery is not worse than a robotic one. The outcome would not alter in terms of the need for the following radiotherapy. Gleason 9 cases are typical for metastases and these are hard to locate with the traditional imaging equipments like CT, MRI or Bone scan. Probably you should have been directed to radiation treatment at the beginning. In any case, the surgery removed the bigger tumor (the whole gland) so that the possibility in the success of the radiation is higher. You need to wait and check your PSA periodically.

    Treatments for prostate cancer are never free of consequences. Their side effects can be nasty and one is subjected to the loss of quality living. Incontinence, colitis, ED and fatigue are common results. One needs to treat them the best one can do. The buried penis  is also typical in surgeries because they dissect about one inch of its length (the portion inside the prostate). You need to pull it constantly to avoid the issue or can get operated (cut inside muscles securing it in) to free it out. The incontinence can resolve itself with time if the sphincter starts using its tiny muscles (if these still exist). You can also look into apparatus like the AUS described in past threads (https://csn.cancer.org/node/299789).

    Radiotherapy does cause fatigue that can be adjusted with a change in life tactics and physical exercises. Diets also influence the way we feel so that you could start giving preferences to certain foods eliminating the ones prejudicial. Afternoon naps and fewer liquids at evening may improve your sleeping. I recommend you to read past threads where you will find the opinions of the many confronting similar symptoms. Here is a link to diets;

    http://cancer.ucsf.edu/_docs/crc/nutrition_prostate.pdf

    I wonder your age. Probably you could find another "Best Friend" to give you peace of mind. Mine is a 12 years old Portuguese pointer also very special to me. I know I will experience a similar circumstance one day. Better not to think about it. Be positive. You will find a way to overcome the problem.

    Welcome to the board.

    Best wishes,

    VGama 

    Psa

    My Oncologist told me that my PSA results can not be used for me.

    He said that because I have low PSA and Gleason 9 that I can't depend on the PSA results.

    The previous year my PSA was 4 & I believe that 4 was the normal range and anything above it would be considered elevated.

    I see where other people had lower PSA results like 2 & had biopsy positive for cancer.

    I also believe that because the Veterans Administration primary care physicians stopped doing the digital rectal examination years ago and only relied on the PSA test and is probably why mine was not detected sooner.

    Plus the facts that a PSA test is not accurate and supposedly only fifty fifty and it should have been required for the digital exam for Vietnam veterans.

    Thanks for your reply.

    I have been very depressed and because I had three children who passed away  my youngest son Joshua died August 2002 from pancreatitis month before his 29 birthday and my oldest son Matthew died from aids in prison because his doctor took him off his pain medication and Matthew stole a prescription form and forged a prescription for some kind of pain medication called diluadid and was caught and prosecuted and was put back in the penitentiary and he said that he was going to die in there. Matthew stopped taking the cocktail medication that was helping him with the Aids because he was not very big guy and I guess he was constantly being molested by the bigger prisoners with aids and he just couldn't handle all the abuse and stopped taking his medication so he would die and he suffered a terrible death in the prison hospice care center here outside Columbus Ohio and it was a terrible slow painful death. Matthew was my adopted son that my ex wife had when she was sixteen and I adopted him when I married his mother and he was six years old. My only daughter Amy died September 2008 couple days after having her gall bladder removed. She was not in very good health and was 38 years old & had health problems and ovaries and fallopian tubes removed and she was anorexic and bulimic for longtime and alcoholic. She just would not stop drinking and every time you see her she has a beer in one hand and Marlboro in the other hand and refused to stop because she said that she liked drinking beer and smoking cigarettes and seems like all her boyfriend's where alcoholic and drug addict and physically abusive to her and possibly Matthew her older hall brother had been sexually abusing her when she was seven years old.

    Matthew died October 2006  in the prison hospice.

    I don't have any other children or wife or girlfriend to help me and I have lot of difficulty not being able to force myself to get out of bed and try to take better care of myself.

    Sorry I should be stronger than I am.

    I just can't force myself to get out and do more because of my emphysema and I can't breathe or do anything physically.

    I'm hoping that I will gain my strength and still have energy to get out and travel because I just don't like being here and not having any friends and family to help me.

    I'm sorry I can't respond and write as well as you and other people here.

     

  • rogerdlama48@gmail.com
    rogerdlama48@gmail.com Member Posts: 11 Member
    Grinder said:

    The guys on this forum have been through it all, and experienced it first hand, so they know what they are talking about. You will discover, like the rest of us have, that you can confidently face your circumstances armed with as much information to make the best decision for yourself that will greatly improve your odds. 

    I don't want these guys to get big heads, but they will be an inestimable assistance to you as you give them the details of your circumstance.

    Read their recommendations, keep them up to date, and read farther back into the archives for even more information. You will find that many have been where you are, and many many of them are way ahead of the game. That should help relieve the feeling of helplessness and you can start feeling confident that there is a light at the end of the tunnel and hold on to hope. And reading about others plight and how many managed to overcome similar circumstance will help take the focus off your immediate distress. 

    You certainly want to take your mind off things you can't control and the negative emotions you are experiencing. If you focus your mind on what you fear, your emotional state will interfere with your immune system. Rather focus your mind on what will improve your emotional state. It takes a bit of discipline, but is well with it

    Start by simply making your mind blank. Then as soon as you a start thinking any single thought again, blank it out again. Then once you have gotten to the point you can keep the negative thought from creating a negative emotion, focus on something positive. Reading an inspirational book, the Bible especially, or think about getting a new puppy someday. STOP! Don't think about the pet you had and how you miss him, but think about what a blessing he was while you had him. And be grateful for that. Then be grateful for the pet you are going to have. Don't think about how hopeless your circumstance is, but be grateful you found this forum where many people are here to give you a treasure trove of advice and help you through this.

    Keep reading, there's more good news ahead and in these archives as well. I know I am grateful for these guys and the everyone who contributed to this forum past present and future.

    Thanks

    Thanks for your comment. I wish I could be more energetic and not be so depressed about everything and I realize that it is best to be positive. I have hard time being positive and with my ptsd from Vietnam and Cambodia I have been very negative and not much fun to be around for longtime especially starting in 2002 when my youngest son Joshua died from pancreatitis, my oldest son Matthew died October 2006 from aids in the Ohio penitentiary hospice care center because he stopped taking his medication because he couldn't handle all the sexual abuse from all the bigger inmates with aids and that was his only way out and my only daughter Amy died September 2002 .

    Lots of other people have wife or girlfriend and children and family and friends that love them and help them and I don't.

    I been so depressed for years and I been isolated and just been me and my little dog Buddy and I just wish I could be more positive and be more healthy SO I can start being more active and Monday to my last radiation treatment and hopefully I can start traveling and doing my bucket list that I have been planning before Buddy died.

    Sorry I am not very good at putting my thoughts and words like you and others.

     

  • rogerdlama48@gmail.com
    rogerdlama48@gmail.com Member Posts: 11 Member
    Grinder said:

    The guys on this forum have been through it all, and experienced it first hand, so they know what they are talking about. You will discover, like the rest of us have, that you can confidently face your circumstances armed with as much information to make the best decision for yourself that will greatly improve your odds. 

    I don't want these guys to get big heads, but they will be an inestimable assistance to you as you give them the details of your circumstance.

    Read their recommendations, keep them up to date, and read farther back into the archives for even more information. You will find that many have been where you are, and many many of them are way ahead of the game. That should help relieve the feeling of helplessness and you can start feeling confident that there is a light at the end of the tunnel and hold on to hope. And reading about others plight and how many managed to overcome similar circumstance will help take the focus off your immediate distress. 

    You certainly want to take your mind off things you can't control and the negative emotions you are experiencing. If you focus your mind on what you fear, your emotional state will interfere with your immune system. Rather focus your mind on what will improve your emotional state. It takes a bit of discipline, but is well with it

    Start by simply making your mind blank. Then as soon as you a start thinking any single thought again, blank it out again. Then once you have gotten to the point you can keep the negative thought from creating a negative emotion, focus on something positive. Reading an inspirational book, the Bible especially, or think about getting a new puppy someday. STOP! Don't think about the pet you had and how you miss him, but think about what a blessing he was while you had him. And be grateful for that. Then be grateful for the pet you are going to have. Don't think about how hopeless your circumstance is, but be grateful you found this forum where many people are here to give you a treasure trove of advice and help you through this.

    Keep reading, there's more good news ahead and in these archives as well. I know I am grateful for these guys and the everyone who contributed to this forum past present and future.

    Thanks

    Thanks for your comment. I wish I could be more energetic and not be so depressed about everything and I realize that it is best to be positive. I have hard time being positive and with my ptsd from Vietnam and Cambodia I have been very negative and not much fun to be around for longtime especially starting in 2002 when my youngest son Joshua died from pancreatitis, my oldest son Matthew died October 2006 from aids in the Ohio penitentiary hospice care center because he stopped taking his medication because he couldn't handle all the sexual abuse from all the bigger inmates with aids and that was his only way out and my only daughter Amy died September 2002 .

    Lots of other people have wife or girlfriend and children and family and friends that love them and help them and I don't.

    I been so depressed for years and I been isolated and just been me and my little dog Buddy and I just wish I could be more positive and be more healthy SO I can start being more active and Monday to my last radiation treatment and hopefully I can start traveling and doing my bucket list that I have been planning before Buddy died.

    Sorry I am not very good at putting my thoughts and words like you and others.

     

  • VascodaGama
    VascodaGama Member Posts: 3,638 Member
    Get your physic moving doing something you like

    Roger,

    The PSA is not reliable in diagnosing cancer but it is the best marker for checking the results of the treatment. As you comment, Gleason 9 types produce little PSA serum, however, the tinny levels of the stuff can be used to control your situation. In fact the guys without the prostate gland (after surgery) should have a zero PSA but this is not the case when metastases are present (your case). Any variation in PSA is significant and doctors can get some control on the treatment via periodical PSA tests.
    In the past, oncologists used to do the control according to the symptoms experienced by the patient. Now they use blood test markers (PSA, PAP, etc) or  the symptoms when the case is already very advanced. I wonder why your oncologist told you that the PSA is not useful to you. Is he thinking that you got a lost case?

    I would like you to request your oncologist for checking the PSA every three months. It is his duty at the VA to do so. You should also get a testosterone test and check your bone density (a DEXA scan). PCa spreads to bone so that you need to check your bone health and act before it is to late.

    Can you provide us with details of your radiotherapy? What about hormonal treatments. Was that discussed?

    You got many responses from above survivors. I have read several reports from Vietnam Veterans in your situation. It is a fact that the Agent Orange is behind your health problems. The system knows about it and has established means to deal with the intent of providing comfort to Veterans. You need to get some assistance at your local VA or visit the neighbor facility if you are not satisfied with the one closer to you.
    I understand you are displeased with the facts and occurrences in your family, but these are past cases. You need to get the strength to make friends and enjoy life even living alone. The last emperor of China became a gardener in his last days of life. Gardening is something I believe to help me in enjoying my retirement. It obliges me to do some physical exercises without much effort but it provides me great satisfaction when I see the results of my little work with the plants growing. I have planted 50 fruit trees and my veggie garden is producing the veggies for my diet. This is great to spend the free time, use one's physic and serve as a mental distraction. It is all enjoyment. I would recommend you to find the means for your enjoyment too, even if what you do is not fully what you like. For instance; you like dogs so... how about engaging in a Dog Walkers affair? You could apply for employment or become a dog-walker to your neighbors. You will like it. 

    Best wishes,

    VG

  • Grinder
    Grinder Member Posts: 487 Member
    Gardening

    Never thought of gardening... that is a great suggestion. Also inspirational music. My former neighbor and friend had ptsd, the real thing, not the ptsd people claim to get on SSD. He was a purple heart Marine served in Viet Nam, and anytime a loud bang in the neighborhood would set him off. You could not come up behind him and say "hey Gary" because some internal mechanism would set him off and he would knock you to the floor, you always had to approach from the front. So there are internal conditioning mechanisms I don't understand going on in authentic ptsd. Eventually Gary and we started a neighborhood Bible study, it didn't help with ptsd but it helped with his emotional state. So maybe joining a church with a home group in your area might help. Make sure it is non denominational that preaches the Grace of God, not legalism, or you will end up feeling g guilty as well as depressed. 

    Your GP should also be looking into vitamin supplements if you haven't already, especially B12 and B vitamins as deficiency affects mood.

    And the awful awful things that have happened are past, you have to do your family this one big favor, make a better life for yourself right here right now. It's what they would want for you if they could tell you. 

    Most of all, don't blame God for what happened to your family... This world is a crappy,  evil fallen place. The same world that has abused you and your family also tortured and killed the kindest man that ever lived after insulting and reviling him for being nice to people, and this is what he had to say about it...

     "28 Come unto me, all ye that labour and are heavy laden, and I will give you rest.

    29 Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls.

    30 For my yoke is easy, and my burden is light."

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member

    Thanks

    Thanks for your comment. I wish I could be more energetic and not be so depressed about everything and I realize that it is best to be positive. I have hard time being positive and with my ptsd from Vietnam and Cambodia I have been very negative and not much fun to be around for longtime especially starting in 2002 when my youngest son Joshua died from pancreatitis, my oldest son Matthew died October 2006 from aids in the Ohio penitentiary hospice care center because he stopped taking his medication because he couldn't handle all the sexual abuse from all the bigger inmates with aids and that was his only way out and my only daughter Amy died September 2002 .

    Lots of other people have wife or girlfriend and children and family and friends that love them and help them and I don't.

    I been so depressed for years and I been isolated and just been me and my little dog Buddy and I just wish I could be more positive and be more healthy SO I can start being more active and Monday to my last radiation treatment and hopefully I can start traveling and doing my bucket list that I have been planning before Buddy died.

    Sorry I am not very good at putting my thoughts and words like you and others.

     

    Meeting you

    I am delighted to meet you Roger, despite your horrible trials.

    I cannot check in as often here at the Board as before, due to a job chage two months ago, so I am starting sort of mid-stream in your discussion thread.

    Your medical situation regarding the Prostate Cancer (PCa) was terrible, but Vasco responded in detail regarding that.  As he said, the surgery was not necessarily a bad idea, but if you are over 70 or 75, most cancer centers would have likely spared you undergoing any surgery, beginning just with the HT and radiation. But second-guessing now is counterproductive and a waste of time and energy.   As most have said, DO finish all of the radiation, it will not have many side-effects in most cases.

    The cutting of the spincter and other severe problems leave your prognosis for urinary control probably poor, but it will likely improve over time.

    I am a veteran (Submarine Service), and  know the stresses of military service. I am a bit younger, and went in long after Vietnam had ended. But I worked as a vendor at a V.A. Clinic for about a year (NOT as a doctor or medical professional -- I am NEITHER of those).   I learned a few thngs that seem relevant to your case.  

    1.  A very large part of what the V.A. does nationwide is related to psychiatric and emotional support. My large regional clinic did 40% of ALL of its business related to PTSD matters. ALMOST HALF of its patients were mostly PTSD-based, not with medical matters.  So know that you should be under their counseling care, absolutely. With the family tragedies you have gone through, it is certain any person would need this.

    2.  ANY documented exposure to Agent Orange qualifies any vet for free PCa care and treatments for life, no questions asked. So the V.A. will continue to be there for you.

    Keep fighting, my brother.   You made one error: You claimed you do not write well.   Your posts have all been well-written and beautiful,

    max

  • Grinder
    Grinder Member Posts: 487 Member
    New family

    Hey Roger...

    I don't know where you live but if you give me some idea, I can talk to some of the ministry guys at my Christian fellowship and they are hooked into a lot of other non-denominational fellowships around the States. They may be able to hook you up with a fellowship. Likely they will have vets in their fellowship as well. Your new brothers and sisters in Christ can become your new family to help you through this. BUT you want to stay away from churches that will put you under bondage to the Law, like the Ten Commandments, instead of freedom in Christ. If you join a fellowship what I am saying about bondage and freedom will all make sense. And don't worry about your current physical condition limiting your involvement, if they are truly a fellowship in Christ, they will be overjoyed to take you "just as you are", diapers and all. 

    But if you are of another faith, I am not here to proselytize you, so you should seek out like minded persons if that is the case. Otherwise, let me know and I and maybe the other guys here can figure something out.

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    edited July 2017 #13
    Upbeat clergyman

    If you attend services, you want an upbeat clergyman. If not change organizations to find one who is upbeat, even if you need to change religions. This is true of any activity, or friends that you might develop; find ones that are upbeat. Additionally you might wish to consult with a trainned professional, someone to talk with.

    Unlike Grinder, I am not a Christian, and do not prostytize

     

  • GeorgeG
    GeorgeG Member Posts: 152
    edited July 2017 #14
    I encourage you to remove any

    I encourage you to remove any and all toxicity from your life that you have control over. Toxic people, toxic food, toxic thoughts. Work to surround yourself with people that really want you to thrive and be healthy and happy. If you are religious then you can do as suggested here. If you are not then I encourage you to be spiritual in whatever way feels comfortable for you. Meditate, Thai Chi, Yoga, commune with nature. Also, the suggestion that professional help to cope may be helpful should be considered. Basically we must all work to find balance and peace with whatever fate we find ourselves facing. You can have grace and even happiness with the largest and most difficult problems but it takes some work and some changes to get there. Hang on to the knowledge that people in your situation find happiness every day.

    Have as many good days on earth as you once assumed and hoped for by making every single one of the remaining days good ones.

    Stay strong brother and stand with other positive shining lights, they are there to be found.

    George

     

  • Grinder
    Grinder Member Posts: 487 Member
    Whichever

    I probably should mention when I say "fellowship" that is a predominantly Christian concept, but applies to whichever religion or belief system you adhere to. If you are Jewish, join a fellowship in your synagogue. If you are Hindu, join a fellowship in your temple or ashram. If you are a Hobbit, join a fellowship of the Rings. If you are an atheist, well, good luck with that. If anyone knows of atheist fellowships where they meet and get involved with each other's lives as a support system similar to family, then let us know. I don't know of any. But you need to find other, compassionate people so you have people to see and things to do, and get emotional support to keep your mind off negative emotions that will adversely affect your recovery and immune system.

  • GeneRose1
    GeneRose1 Member Posts: 64
    edited July 2017 #16
    God Bless You. Now Get The Hell Up & Make Some Changes

    Roger, You are going down a rough stretch of road but you've got to own this & rise above it. Yes, you've had some tough breaks but a man who served outside the wire, in-country, can deal with anything & keep moving forward. Think about what your Platoon Sergeant & the guys in your squad would think if they saw you right now? First off, go down to the local shelter & find a new pup. You're never going to replace Buddy but you CAN find a new partner to help you through these times & move forward with. Second, it's not your fault about your children. They're in a better place & you can honor their memory by emerging from this an improved version of your current self. Third: Have you gotten all your claims done with the VA, Social Security, & Medicare? You served in-country & now have prostate cancer. Because of that, it's presumptive that there's a service connection due to Agent Orange & the VA will declare you 100 percent disabled which translates to a sizeable amount of tax-free money coming in every month; certainly enough for a man & his dog to live on very comfortably. Too many veterans live in poverty because they never took the time to do the paperwork!! If you don't know how to get this done, let me know & I'll help. Fourth: Are your brothers at the VFW, American Legion, & DAV aware of what's going on with you? There's no way on God's Green Earth that they would let this slide if they were up to speed on the situation. Fifth: Stay on this forum and research all the content. Vasco, Old Salt, Grinder, and many, many others have an amazing amount of insight into this disease & by studying their responses you can take charge of your cancer, own it, & move forward. Thanks to them, I pretty much manage my own issues & when I see my oncologist I have a page full of notes to discuss. He's become my sanity checker and coordinator for the treatments that I want to get done & I really feel like I'm part of the solution. Knowledge is power & the grave yard is full of guys who sat back & relied on their Doctors' brilliance & initiative to get them though it all. Last, Dogs are wonderful work-out partners and can help you get moving again. Getting outside, getting the blood flowing, breathing the air, & getting some sunshine sure can't hurt. Very last: Break your health problems down into smaller chunks & start solving them or finding ways to deal with them as separate issues. My prostate cancer journey came with raging incontinence & Type 2 Diabetes. The thing that I can work on, right now, is the Type 2 Diabetes & I work out like crazy to lose weight & kick this to curb. I know I'm making progress because the dosages of my meds are regularly being reduced, my twice daily blood checks are better, & I feel great...plus my old clothes don't really fit anymore. Next is the incontinence & this forum has lots of posts from guys who have had corrective surgery & the various solutions. There's a lot you can do to make your situation better & I look forward to seeing you on this forum for many years to come. If there's anything I can do to help, I'm right here. Best/Gene

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    edited July 2017 #17
    GeorgeG said:

    I encourage you to remove any

    I encourage you to remove any and all toxicity from your life that you have control over. Toxic people, toxic food, toxic thoughts. Work to surround yourself with people that really want you to thrive and be healthy and happy. If you are religious then you can do as suggested here. If you are not then I encourage you to be spiritual in whatever way feels comfortable for you. Meditate, Thai Chi, Yoga, commune with nature. Also, the suggestion that professional help to cope may be helpful should be considered. Basically we must all work to find balance and peace with whatever fate we find ourselves facing. You can have grace and even happiness with the largest and most difficult problems but it takes some work and some changes to get there. Hang on to the knowledge that people in your situation find happiness every day.

    Have as many good days on earth as you once assumed and hoped for by making every single one of the remaining days good ones.

    Stay strong brother and stand with other positive shining lights, they are there to be found.

    George

     

    Superb

    Loved your post, George, about living each day.

    Rerminds me of a refrain in a big Hank Willims, Jr. hit:

    If the sun don't come up tomorrow, people I have had a good time. I'm just laid up here in a country state of mind.

    Another line in the same song is about as good, and refers to how all groups find ways to cope:

    Ya know the rednecks and the Preppies, the're in their discos and honky tonks, somewhere between raisin hell and Amazing Grace...Lord I know just how they feel, ya gotta get out and kick up your heals....

    .

  • Grinder
    Grinder Member Posts: 487 Member
    edited July 2017 #18
    Ditto

    Ok... When it comes to PC, I am a newbie and those guys are way out of my league. But otherwise this is a lot of great advice from Gene we can all use...

     "Break your health problems down into smaller chunks & start solving them or finding ways to deal with them as separate issues."

     that's goes for a lot of issues in life. 

    I have to admire and appreciate the wisdom in this forum. When I was an undergrad and then an intern at the Psychiatric Research Institute, we didn't have this accumulation of wisdom and advice at our fingertips like we do now in this information age. Our journal research was still limited to spending time in libraries consulting hard copy. Tedious, time consuming, and I can't count how many times you just wanted to close your eyes and sleep. And experimental research in journals was bo-ring, though clinical research was a little more interesting. We didn't even have electronic calculators then, but a great big mechanical math "computer". I'm guessing guys my age in here know what I'm talking about.

    Now, all we have to do is plug a parameter into a search engine and find droves of information and personal testimonies and experiences and advice. AND the advances in PC treatment are amazing, like CK and the Da Vinci machine.

    Roger... Listen to these guys and keep delving into this forum's archives as well as Healingwell.com et al. Just being armed with knowledge will give you a burst of confidence. We fear the unknown, knowledge is the cure for that. Spend a day or two reading pertinent threads in this forum, it will take your mind off what you can't change as you discover you can change more than you think.

  • Grinder
    Grinder Member Posts: 487 Member
    Bob Hope

    I remembered when Bob Hope made a joke about a bag strapped to his leg. I am pretty sure he may have worn a permanent catheter and bag, though I can't get a Google search hit on it. Back then I was oblivious to prostate issues, and didn't really appreciate the ramifications of Bob Hope wearing a catheter on stage. Whatever his issue was, it did not faze him a bit when making personal appearances as a comedian. And whatever expensive technology they had way back then is downright primitive to the affordable treatments and procedures available today.

    Edit: just found a source that said he wore a clostomy bag for thirty years... Still, that could not have been fun.

    "Life is not a matter of holding good cards, but playing a poor hand well." ...Robert Louis Stevenson

  • FinishingGrace
    FinishingGrace Member Posts: 82
    edited July 2017 #20
    GeneRose1 said:

    God Bless You. Now Get The Hell Up & Make Some Changes

    Roger, You are going down a rough stretch of road but you've got to own this & rise above it. Yes, you've had some tough breaks but a man who served outside the wire, in-country, can deal with anything & keep moving forward. Think about what your Platoon Sergeant & the guys in your squad would think if they saw you right now? First off, go down to the local shelter & find a new pup. You're never going to replace Buddy but you CAN find a new partner to help you through these times & move forward with. Second, it's not your fault about your children. They're in a better place & you can honor their memory by emerging from this an improved version of your current self. Third: Have you gotten all your claims done with the VA, Social Security, & Medicare? You served in-country & now have prostate cancer. Because of that, it's presumptive that there's a service connection due to Agent Orange & the VA will declare you 100 percent disabled which translates to a sizeable amount of tax-free money coming in every month; certainly enough for a man & his dog to live on very comfortably. Too many veterans live in poverty because they never took the time to do the paperwork!! If you don't know how to get this done, let me know & I'll help. Fourth: Are your brothers at the VFW, American Legion, & DAV aware of what's going on with you? There's no way on God's Green Earth that they would let this slide if they were up to speed on the situation. Fifth: Stay on this forum and research all the content. Vasco, Old Salt, Grinder, and many, many others have an amazing amount of insight into this disease & by studying their responses you can take charge of your cancer, own it, & move forward. Thanks to them, I pretty much manage my own issues & when I see my oncologist I have a page full of notes to discuss. He's become my sanity checker and coordinator for the treatments that I want to get done & I really feel like I'm part of the solution. Knowledge is power & the grave yard is full of guys who sat back & relied on their Doctors' brilliance & initiative to get them though it all. Last, Dogs are wonderful work-out partners and can help you get moving again. Getting outside, getting the blood flowing, breathing the air, & getting some sunshine sure can't hurt. Very last: Break your health problems down into smaller chunks & start solving them or finding ways to deal with them as separate issues. My prostate cancer journey came with raging incontinence & Type 2 Diabetes. The thing that I can work on, right now, is the Type 2 Diabetes & I work out like crazy to lose weight & kick this to curb. I know I'm making progress because the dosages of my meds are regularly being reduced, my twice daily blood checks are better, & I feel great...plus my old clothes don't really fit anymore. Next is the incontinence & this forum has lots of posts from guys who have had corrective surgery & the various solutions. There's a lot you can do to make your situation better & I look forward to seeing you on this forum for many years to come. If there's anything I can do to help, I'm right here. Best/Gene

    Thanks for this Gene

    I really appreciate your wisdom here. It isn't easy but it sure is simple. I need to apply some of your advice in my own life right now and am really inspired to stop whining about a particular thing and get up and do something about it.