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What does death due to prostate cancer entail?

hate to ask this question but I'm fairly sure I'm not the only one who wants to know. Last year I watched my 90 year old father die with prostate cancer. He fell during the night and never recovered. This year I'm looking at the possibility of death myself. l don't really know what l can expect.

What does death entail? Dad's death was relatively quick, some pain but no dramatic symptoms .

What might l expect?

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You might expect that a number of people may not want to discuss the details of dying. You hated to ask, but you did anyway.

From your description, it does not sound like your father died from his cancer and his experience may not be indicative of yours.

I do not think many people here are in a position to know the answers to your question and many may not want to contemplate the subject or contemplate the subject in public.

If you really need to explore this subject, I suggest you discuss with your care team. They may offer you options for palliative care that may provide comfort.

As I mentioned when I answered your other post, no one can tell you whether you should continue to fight or not. It is a personal decision that no one can answer but you. I am not sure there is benefit in worrying about the details of dying.

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I understand the reluctance to discuss death, particularly here. But where ? My care team is reluctant as well.

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His question is valid. Like it or not we all face the answer to that question every day. I find your response to him terse and unfeeling. I understand that you may not want to face that inevitable fact...but try to be a bit kinder in answering a very important question. What will we all face in the end. 😑

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And he didnt ask for your opinion

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I'm not offended. I hesitated to ask.

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You shouldn't hesitate to ask any question. We're all here to deal with the reality of our situation. 😊

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There is a post about this issue:

healthunlocked.com/advanced...

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Thank you. I appreciate the honesty.

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Tango, I looked for Dr. Larson's post from Quora. I am on Quora. I read the original in which I remember the doctor also mentioned that death from prostate cancer can be more painful than crucifixion. Thanks for finding it. Not everyone dies as horribly. No one should let Dr. Larson's post lead them to any rash decisions.

Currumpaw

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This is Joe’s wife, and as I’ve written before I’m a licensed therapist, and most of my career has been spent as a social worker in the emergency room of a level 1 trauma center. I’ve been blessed to have many families invite me into their lives on their very worst day, when their child dies, and I’ve experienced all parts of this process from beginning to end, many, many times.

Death is not the enemy here. We will all face death one day. As we were all born, so too will we all die.

I don’t know the answer to this specific question, but I’m certain you’re not the only one who wants to know and I’m equally certain it took courage and bravery to ask. I’m sorry if you get responses to this post which are shaming or make you feel badly for asking. This is a health site on advanced prostate cancer. Wanting to know more about the process of death is valid. What’s sad to me is that my experience on this site has been that questions such as this are often answered with many negative responses. My question is...why? My husband is young and he is fighting this battle SO hard! We’ve also had difficult conversations about death, but they always have ended with a sense of relief that often accompanies those kinds of hard conversations. When we hide from or are afraid of confronting realities we make those fears bigger. In my experience, when people are provided with factual information their fear decreases, and they make better, more informed decisions, and they have an increased sense of peace.

I hope people will consider being more open minded to questions such as this.

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JoeKaty, thank you so much for this response. it was a breath of fresh air! I almost quit this forum a while back for all the name calling. And often when someone posts, those who disagree stomp all over them. It's like a mad rush to prove who is right. Most of us have an awful disease and are warriors fighting a battle. I first came here for support, but not anymore. Just stop by looking for a bit of new information. Rarely ever post anymore. I get my support elsewhere.

Thank you for calling out the shame. A lot of us not only have this disease, but carry around wounds like shame. I have often wondered about the role of psychological wounds on this disease. But that is for another time, maybe on a different forum.

And good on you Rmanns for asking a totally valid question that most humans will ponder!

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Thank you...I truly feel that shame is so damaging (if you haven’t ever read Brene Brown or see her TED talks- I recommend!) and I have also wondered about the psychological/medical connection. One cancer booked I’ve actually enjoyed is “Love, medicine and miracles”. I can’t say I buy into all of it but it was a worthy and thought provoking read.

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Capt: I too am tired of the put downs received by people seeking information. I can’t put down the “put downers” but I would encourage them to be more respectful. Pls tell me the names of your other favorite PCa web sites. I am always looking for more info on our problems... Thanks, Joseph. Newport RI

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Thank you very much

I'm not afraid to ask or to be shamed. We've all been taught to fight to the end and never ever give up.

The image of a warrior is comforting, except it leaves one a loser in the end.

I'll not have lost at life I'll have completed life. l hope with dignity and gratitude.

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That is a great attitude, and I also agree with the mixed message the warrior image can send. I’ve seen many people (even children) literally keeping themselves alive for others because they are told to “keep fighting” by loved ones with the best of intentions. Several weeks ago I was with a teenage cancer patient who had stopped treatment but was hanging on. His mother finally told him it was ok to go, and he passed away within less than two minutes. Peacefully.

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Excellent analogy. I do not like the idea of calling treatment...."fighting a battle" . What we are doing is living until we die. I don't like to lose anything, especially a fight...so I love how you say "I'll not have lost at life, I'll have completed life". Very well said and my attitude.

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I like what both of you had to say. We are “living until we die”, and “I’ll not have lost at life, I’ll have completed life”.

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Ho Greatjohn... yeah, I am aligned with your attitude. I have pondered the fact that cancer itself is the result of confusion in the very cells of my own body. I am talking more about a philosophical stance, but I believe that my attitude and understanding has a lot to do with my experience of this disease, and this reflects my own values, character, and the way that I choose to live. Rather than "fighting" cancer as if it was some invader, I think of myself as helping and healing my body, not fighting a war. It is a return to sanity at the cellular level, balanced with the reality that I live in an insane world and can only do the best I am able with the tools I have been given. In many people the body itself destroys pre-cancerous, cancerous, or 'rogue' cells that are not supporting the organism to maintain health and homeostasis: that is the process that I am participating in with my medical choices, the food I eat, and the way I take care of my body. And homeostasis is a living process, not an end point. I am seeking balance. I don't want to be at war with myself or my body (or the medical system for that matter: although in the latter case it is definitely sometimes necessary!)

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Great Attitude....all the best.

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Yes, death faces us all....My husband Sidn died from his cancer just a few weeks ago. He was told by two oncologists , other than the one treating him, he could try new meds and maybe, who knows, it will keep him alive awhile longer. He tried Zytiga and it kept him alive and with a good quality of life. After that, several other meds with Sid's blood tests not too bad but he feeling very bad. He fought this losing battle for 1-1/2 years in bed most of the time listening to book tapes....He even had hopes at the end until the cancer went through his bones,the last two weeks of his life in the hospital on morphine plus other pain killers.

Yes, death faces us all, but all the people I know will go any route trying to live.

It's hard for me after seeing my marvelous husband suffer so much.

He was a man with many friends because he truly was a person who sincerely caredfor them....and was so very devoted to our daughter and myself. He was part of this group which I believe helped him mentally in his fight. ........So, I thank you all.

Shyrlene

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Shyrlene, I am so sorry for your loss...

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I want to clarify something. I am not accusing anyone in this thread of shaming. I am just glad that the subject of of it came up. What I speak of occurred elsewhere.

Rmanns, for me, I hope when I transition, however that is, that I am at peace with myself and between then and now I find gratitude in every moment.

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This site has been the most open I've found. I agree. Elsewhere I've found a race to the most recent false hope.

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There have been some previous informative posts here about dying with prostate cancer. Generally, there is lots of avoidance of mentioning dying on this website and some who offer information are said to be negative.

I prefer to know as I used to be so scared whenever I would think about what my husband would go through, if I can physically care for him and how to survive without him, etc. I wanted to learn to make it easier for us.

If you search and dig a little deeper on here you will gain some knowledge of what the end may be like as it is different for everyone. I really appreciate those who have shared so much of their personal experiences dealing with death.

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Thank you The above post was very helpful, a little over harsh per $ops.

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I remembered that I had written similarly on a previous post and also with @greatjohn . I would agree with you that the previous link shared is...intense...the ugliest of the ugly...and seems written to frighten, though I noticed it contained some updated information at the bottom by Tall Allen which I would encourage you to read if you read the first part of the post.

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I sincerely apologize if l have allowed my emotional reactions to hurt others. I'm grateful for the information and l understand those who are hurt .

I feel like I'm facing a difficult decision without real information. It seems to me the information needs to be available.

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"Dying is the end of illness. It is the further shore of illness. There's a wonderful book called 'The Wilder Shores of Love.' Well, dying is the wilder shore of illness."

Rmanns here is a link to an essay on the topic written by a Man who was dying of prostate cancer, You can read back through his essays from here also. phoenix5.org/essaysry/rvycj...

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Don't apologize! We are all humans and your question is valid. You have said best, it not here, where? When it comes to this nasty disease, no topic should be off limit. We are all grown-ups! This is coming from me: the wife and I myself at time find pondering on this as much as I try to cast those thoughts away. I am afraid of losing the love of my life (20 plus years of being with my husband!). It's frightening and I'm not afraid to show off my vulnerability. I wish you all the best Rmanns and thank you for being brave enough to ask the question which is the obvious gorilla in the room.

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I think about it every day .... Thank you for asking.

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Did you see the post from several months go? Some of it was terrifying but some was just what l needed to know. healthunlocked.com/advanced...

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Oh that is I think the same as the post I was referring to. This post takes every horrible thing that does happen to a percentage of patients with pca and puts it all together in the most terrifying, frightening, and I believe, mostly unrealistic manner. It was written to shock and it does. This time last year my husband was in ICU actually dying of prostate cancer that had invaded and replaced his bone marrow to the extent that he could not produce red blood cells and he began to bleed uncontrollably- one of the ways in which the post mentions. It was horrible to watch, but the times he was closest to death he was “loopy”, barely conscious, no pain. If not for intervention he would have become unconscious and not woken up. Now, he has had countless bone mets and he is on morphine ER 24/7 and norco for breakthrough pain. His pain is mainly controlled. When it is not he can take more, though usually chooses not to because he CHOOSES to be more aware, even if in pain. When people are dying, without intervention they generally either become non responsive and don’t wake up again, or, if they are awake and in pain, can be given as much medication as it takes to keep their pain under control (if they choose that) knowing that it will at some point cause their death. Or, they retain some level of pain bc they want to retain consciousness. Even then, eventually they will go into semi-consciousness, their breathing slows down until they have very sporadic (agonal) breaths and then they stop, or due to organ failure their heart stops. Those are the most common scenarios in which death occurs. When people are aware of and have accepted this, especially when they are in a living and comfortable environment, there can almost always be a “good death”, or at least that has been my experience and is what I believe. It is heartwarming to see how many people have responded to you. I hope that you have found some of what you are looking for...

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Yes, I think the negative response to the post from a few months back was the substance of the post, not the subject of the post. The truth is, people die from different things in different ways. Much depends on where the mets end up. The previous post was terrifying. But we hear from many spouses on here who say that their husbands died peacefully, with little pain, in the company of their family and friends. I think the final stage, like so much associated with this disease, depends on the person. It's not one size fits all.

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Agreed- it was the content of the linked post with which I had an issue. It has just been my experience that in general - regardless of type of death or type of cancer- pain CAN be controlled. It’s just that there is generally a trade-off with longevity of life and amount of consciousness. When my husband was in ICU last year, he had one really horrific pain day, and was put on a morphine pump. He was taken off when his respiratory system became depressed. He was pain free, but because we were still hoping he would pull through (and he did!) we stopped the IV morphine. In a different scenario, we would have left it on and he would have just not woken up. People (or their families) choose differently for different reasons at different times in the disease course.

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At Last! Some real details, no matter how awkward.

Thank you for sharing this .

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Absolutely. I think there is a real need for real information about death- for patients, for caregivers, for loved ones who are worried. Often what people imagine is so much worse than reality. When I began working at Children’s we were part of a research study with Harvard showing that if we could bring families in the room for traumatic procedures such as CPR- situations in which historically Dr’s prefer to close the doors and have loved ones wait outside. What we learned was that even when their child died- when parents are able to be present their grief process and coping afterwards was positively improved. I think that is similar to this- real information is beneficial to coping- not detrimental.

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DM me. My friend passed in 2016. We met either in first grade or kindergarten, I can’t remember. We had prostate cancer at the same time.

He had a lot of bone Mets. Ultimately his body just failed. I didn’t know the exact cause. He’s in Philadelphia and I’m in D.C.

John McGlaughlin also had prostate cancer and he was on his show all along so everyone is different.

I hope you (all) don’t mind the comments.

Mark

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lid rather not get into DM but thanks.

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I would be willing to bet that it entails dying, a very simple thing to do. Many, many men who die from this stuff die without a lot of pain. They just, well, die. I do believe that everyone dies, some in a morbid way. Time to move on.

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My father died March 2017 of MPCa, and a good friend died in 2016 of MPCa. I am dealing with MPCa. The most important thing to do is to contact the local home health and hospice organization when the time comes. In each case pain management and personal dignity was kept first and foremost.

Fight the good fight!

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Let's face it, many of us are afraid that if we should die of this disease (or quite a few others) that we will die in great pain and helplessness, something that we would not choose. But we also know that advances in hospice care and pain control mean that things do not have to be as bad as we fear, even if the "worst" comes to pass. I appreciate the testimonies here to hospice care and pain control. I have not been present at the death of anyone from prostate cancer, but I was with a friend some years ago now when he died of AIDS, something he had feared for a long time. His end was peaceful. I was singing to him softly almost under my breath (he was a musician and so am I, and we had worked together, and it seemed the right thing to do--a number of us had sung to him at various points, people from his church choir and other friends like me). He did not seem to be in pain, but of course I could not be sure. Some time before he died he began to breathe more slowly. And then yet more slowly. There were spaces in between his breaths when his breathing seemed to stop. And finally, it did. The end, after his long illness, seemed very simple. I know there are are worse stories (as well as better ones). But investigating and arranging for hospice care ahead of last minute necessary decisions, and making our wishes for pain control clear, including making it clear whether we want levels of meds that could hasten our death, can help give us some protection. And letting our friends know that we are open to their help can give us a bit more.

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Thanks good thoughts

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I will let you know when that time comes. Hopefully, with treatment and miracle medicines, most of us will live a normal life span.

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depending on ones age it should be controlled for pain relatively peacefu. remember we have so much more pain control meds out there for all of us when the time is coming. my mom passed away this pas january at 100+ from altimeter &Demetria. for about a wk mom had refused to eat and she starved herself. her problem was she didn't remember about eating or she was hungrey.she passed away in sleep early morning when my nac's came over to get her ready for breakfast. me i would worry about when we enter heaven and what is that like.

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Dear “charlesmeyers1964”,

Les and I send our sympathy in the death of your mother this year. My mother died one month from her 104th birthday and not long before was still trying to run behind her walker. My father died of dementia as did your mom. Les’s mom also had some sort of dementia (e.g. going outside without a coat at below zero temps.) We still had many meaningful hours with each of them prior to their deaths. I hope you did with your mom.

In our case, something almost miraculous was still alive until their last hours that significantly extended our long lives together and sustained our faith in God. Even though we can’t KNOW what heaven is like, why would you or we worry?

I choose to trust that ultimately all things work together for good which is what our beloved fathers preached and believed. Holding hands, if you will allow that, and praying for God’s help as we all approach the unimaginable. Mrs. S

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Both my parents died from Cancer. My Mam in her 80’s from bowel and my Dad in his 60’s from Prostate. I now have prostate cancer at 55 and bad diverticular disease. Both of them died in similar ways. The cancer eventually spread throughout the body and to the brain. Neither complained of being in a lot of pain but were in hospital for some time before they died. At the end they weren’t conscious and slipped away. My Dad had cancer in his backbone which left him paralysed from the chest down for the last six months of his life. I hope this doesn’t upset you. He used this time to prepare himself telling us stories. Even showing me how to shave properly and I follow how he did to this day. Although it deals with AIDS and not cancer I listened to the audiobook of Holding the man, on a drive from Tuscany to Paris and it contains I believe the best description of somebody dying from a terminal illness that I have heard. It reminded me of both my parents deaths. I hope this helps. I understand why you asked this question as I also like to prepare myself for what might be coming, currently I’m at a very early point in this journey and am hopeful it’s a long time away. I’m not sure anyone can tell you specifically as although all of us are on a similar journey our bodies and cancer may not react exactly the same way. At least that’s how I understand it. Hope this helps and that you can see some little beauty in today and the days yet to come. Bill

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Thank you. I know it's hard to talk about as well. My spine is a mess and l suspect I'll end up with limited mobility.

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Holding hands with you, too, Rmanns, and hoping for help for your spine and my husband’s. Love, Jan and Les

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We are all here on borrowed time with or without APC so enjoy life .

As for me I talk to my God on a daily basis and hopefully my transition will be at peace knowing I will rest with my love ones that have past before me. Nobody can tell you what your eventual passing will be like we can only comfort you in the present.

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I watched my sister die of cancer of tongue. She was on hospice of the last four months of her life. During those months she was pain free and lived somewhat normally. My brother and I ask her what she wanted to do. So we went to museums and art galleries in the area she never saw. Her dying was peaceful.

When I was first diagnosed it was like a wall slammed shut in front of me. I has no future. Well , that was 26 years ago. It's been great. I am coming close to an end. I am grateful for all those years I still research new drugs and treatments, both traditional and alternative. I will not give up. But I imagine my death will be the same as my sisters.

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I’m with leo2634.

Since the issue was raised, and If anyone can handle a somewhat graphic description of what the final days may be like, read below. If not, move on. Also, I write this solely based on my own experience and observations. Every death, just as every life, is unique.

Last month I watched my brother, Mike (age 71) die from kidney & liver failure secondary to type 2 diabetes, not from prostate cancer. But from what I have heard and read, the end from PCa is often very similar. I was with Mike when he ate for the last time. We had a wonderful “last supper” a week before he died, of spaghetti and meat sauce from one of the family members who owned the old Cafe DiNapoli in downtown Minneapolis. He gobbled it down with great pleasure. And we reminisced for awhile after that about our good old days, and the experiences we shared over the years. It was bittersweet. After that he never ate and barely drank. He was in and out of consciousness for a few days until finally he just slept as he drifted away from us. The hospice nurses gave him dilaudid whenever he seemed restless or agitated, and made sure he got moved around in his bed to keep him more comfortable. Near the end, on his last day, his breathing slowed and he developed Cheyne-Stokes breathing with a little of what some morbidly call the “death rattle.” I think it was more uncomfortable for us than it was for him since he remained unresponsive. Eventually his breaths were farther apart until they just stopped. By all accounts, his final days, and his death, were peaceful and painless. I miss him dearly. My mother went through an almost identical process when she passed away in 2011.

OK then. Time to go out to the driving range and enjoy this beautiful Florida morning with thanks to God for all the ways he has blessed my life.

A quote attributed to Eleanor Roosevelt...”yesterday is history, tomorrow is a mystery, today is a gift. That’s why they call it the present.”

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Thank you.

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great story..

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God's Word always gives me comfort, through aortic valve replacement, two strokes, and advanced prostate cancer. Plus, the Puritan divines have such a realistic view of death. I highly recommend George Swinnock's book, "The Fading of the Flesh and the Flourishing of the Faith."

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Father in lawwent from some pain to in a bed with a morphine pump in a matter of a month. Can’t really say he was in pain at the end as he was not aware of anything around him. Then he went to sleep. Know that sounds simple but the body just shut down on him 😢😢😢

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I read an earlier post from you that was very helpful. Thanks.

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Most men will not die of prostate cancer, that will be the noted cause. Many other issues mostly cardio pulmonary and or kidney related even though it will be written as secondary to

cancer.

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Rmanns and greatjohn, you are heroes. Thank you. Courageous curiosity. Great discussion that I find absolutely apropos. It's really crazy to me that some people won't talk about this very important topic. Although certainly everyone will have their own, unpredictable experience of dying, I believe it helps me (and my loved ones) to have some knowledge about what to expect and to inform our decisions along the way.

I have spoken about this topic with a couple of my doctors. What I remember being told was that many patients lived tolerably well until the last couple or few months when their capacity diminishes; but that pain can generally be fairly well controlled throughout.

I was with my father who died of kidney cancer and this was very true for him. He dealt with discomfort and plenty of medical issues along the way, but he was still hunting antelope three months before his death and doing relatively well until the last month or so when he went into hospice, although he was still on his feet and caring for himself when he made that decision.

Having a good hospice team can be a huge help. When my dad first entered hospice care he was still on his feet. At one point my dad went off hospice to go into the hospital for treatment of symptoms. In a way, we were lucky to get him home again, where he lived for almost a week longer. He was pretty confused and uncomfortable in his last week or so, but we gave him all our love along the way. He had problems with pain in his abdomen, and an urge to urinate and related pain that would persist for maybe a few hours at a time. He eventually settled down into a fuzzy state of consciousness in his last couple days and seemed to die quite peacefully right at cocktail hour, which makes sense for him :-) it was a challenging, and deeply moving experience.

When he did come home we decided to switch hospice providers because he had interviewed a few, and we felt like there were some gaps in care during the transition back from the hospital; specifically because he had ascites (fluid in his abdomen) which was uncomfortable, and one hospice team had a physician who could drain the ascites at home while another would not. There was a risk that draining the ascites would drop his blood pressure and he would die. In the end, he never did have the ascites drained at home... it wasn't a high priority and he died before that happened.

I relate all this because I find it helpful to me to hear of individual journeys in order to imagine and understand what the various possibilities and generalities can look like in individual experience. I hope it helps others and is not too 'triggering' of the fear and trauma that some of us carry. I myself am hospice volunteer and that has been very meaningful to me.

Just one more tidbit... I believe that somewhere along the way I heard of the possibility that one possible cause if death is when extensive bone meets can put so much calcium in the blood that the heart stops: obviously there would be a lot going on when it gets that bad.

I myself have metastases in my lungs, so I don't know how that may unfold for me. Obviously it depends on where the cancer metastasizes as to the details of actual death.

Lastly, you may be interested to explore "VSED", or voluntarily stopping eating and drinking. I know of people who have chosen this, and I believe it has a lot of merit for the end of life. I believe it can be fairly comfortable and peaceful, and is arguably a quite natural impulse in a dying body - we can see this in nature and less medicalized settings. My thought is that this choice can give an element of control at the end of life, while also relatively gentle and natural.

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Thanks again. I'm feeling so good right now it seems crazy to ask but I k now it's temporary. Thanks for the information about VSED.

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I'm happy to hear you've been managing your symptoms. For me, when I'm feeling good is a great time to ask, process and ponder these questions. That way, when I'm feeling shitty, lacking energy, depressed or confused I can remember how I confronted this stuff with clarity and presence. This is why I think dying should be invited into the world of the living (and vice-versa), it's something we should all do together and that the not-yet-dying can benefit from experiencing and understanding before they're deep in it.

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Tak- Druk what a blessing you are.

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This is so helpful. Thanks.

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I’ve heard that from a counselor who has specialized in patients and their families in later stages of cancer that VSED is a very helpful tool in speeding along the final stages and gaining some control at the end stage.

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l saw my dad stop eating . He just stopped.

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Good Morning Brother Rmanns,

I've witnessed death first hand for both parents, and 4 grandparents. None were dying of prostate cancer. Some were peaceful, some took time as people worked through issues. My father fought for a day and a half to breathe before succumbing.

I think of my death more and more, because it is coming and I want my issues cleared, so that as the Lakotah Native Americans say "It is a good day to die" when it comes to me.

I've read on how painful it may be for us, and while this gives me pause, I hope I will embrace it. Even the pain is a reminder that we are still here, and still a feeling part of the material world.

I am sure I will cycle through emotional states. I'm human, and I feel, so I have to face those feelings. Wrong, or right feelings just are, so denying them is like denying life itself. I will face them, feel them, thank them, and release them. (as soon as I figure out that's what has me so out of whack :) )

My biggest fear as a child was to die alone. I had no fear of death, only of facing it alone. I have learned through my 60 years that thinking we are alone, or can be alone is the illusion.

Good luck, and love to us all

Bees

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Thank you so much for this very enlightening set of posts. I've been a healthcare worker for all my life and I've seen death many times but never actually thought of how it happens to you. You're alive, then you're not. It's the in-between that is frightening to us and it's good to discuss and try to understand. Good bless us all and that's the best we can hope for.

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It's the Last Great Adventure. I'm not afraid of it; I've seen too much combat for that. I'm curious as to what will happen.

It's natural to regret all the things you've wanted to do and now won't be able to. Don't. Think instead of all the wonderful things you did in your fantastic life and all the amazing people you were blessed with knowing and loving. Be happy you were able to live as long as you have - many people don't. As long as you're still alive - live! (And drink more champagne!)

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Rmanns,

A man's death from prostate cancer varies greatly. The pain that was endured by a prostate cancer patient that Dr. Larson relates posted by tango65 is very different than what you said your father endured.

I had the privilege of exchanging a few short messages with Charles Eric Winter before his passing. Winter did much to educate others about how men with prostate cancer can suffer yet he never gave up hope until all treatment options were exhausted. Here is a link to a YouTube video of a courageous man discussing his cancer, acknowledging that his end was near yet speaking with gratitude of the treatments that bought him some time to leave life with some positive contributions about prostate cancer.

Remember that not all of us will have that experience. Again, you mentioned your father's passing while not characterized by excruciating pain was quick.

Please note from the American Cancer Society's link below, current, August of this year, that there are roughly one third the number of grants for prostate cancer as for breast cancer and less than half the funding for prostate cancer as for breast cancer. Clicking around--I read that this is justified because at the age when men are typically diagnosed, it is considered that men have already had a long life---! Isn't that along the same line of thought brought up when he ACA was passed? Death Panels??

Current Grants by Cancer Type | American Cancer Society

cancer.org/research/current...

Currumpaw

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I think the disparity in funding for prostate versus breast cancer has more to do with women being generally better at organizing, supporting one another, and putting pressure on politicians and grant agencies. Men are more likely to suffer in silence. Not all women, and not all men, but enough to make a big difference.

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Hmmmm--FCoffey,

I think you're onto something! I do however think it is changing. Google Sophiris and Topsalysin. There are now some big strides happening. You never know what the next day will bring. We need to try to hang in this "game".

Currumpaw

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If this is a game, I'm calling a time out! I'd like 15 years, please. ;-)

There's certainly good work going on in prostate cancer research and treatments, but it is still vastly less funding than goes to breast cancer. Women find ways to cooperate, men find ways to argue.

My experiences on this forum and others support this. When I go to a breast cancer support group, I am made to feel welcome, even if I have stupid or oft-repeated questions, even if I'm not obviously with a breast cancer patient. They welcome all comers. The people in those groups really do support one another, affirming experiences and choices that are directly opposite of what most people choose or the misnamed "standard of care" dictates. The fact that everyone there shares a common purpose is always clear.

In face-to-face prostate cancer support groups I've attended, newcomers are greeted with a brutal interrogation in front of a bunch of strangers. What is your PSA? What is your Gleason! Both numbers!! How many positive cores? What percentage?? What is your clinical stage? What do you mean you don't know! Has your doctor started you on (treatment of the month, or latest study, or newest FDA approved profit center for big pharma)? Why not?

After the serial public interrogation of the newbies, the old timers proceed to pontificate on how they've dealt with the many debilitating, life-changing effects of their treatments. It's scary and off-putting for men who got the bad news a few days or weeks ago. There's little chance and less tolerance for a newbie to ask FAQ type questions. Any hint of interest in competitive treatments provokes withering criticism and name calling.

The same thing happens in this forum with respect to criticism and name calling. There is a small handful of prominent posters who go out of their way to denigrate and insult people who might have different values, different priorities, and make different choices than everyone else. Asking certain questions invites abuse. Promoting or defending a competitive treatment risks being labeled a spammer or crank.

That isn't what I've learned a real support group looks like or acts like. The key word is support. There is plenty of room on reddit for people who enjoy trading insults.

This vastly different dynamic between support groups goes a long way towards explaining the enormous disparity between funding for male and female hormone-related cancers of excretory organs. I'd march alongside EVERY woman (and man) I met in breast cancer support groups. In prostate groups, I wouldn't care to associate with the all too common obnoxious people. The loudest voices tend to splinter and intimidate other members. No wonder our voices are weak, and the results so skewed.

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I'm sorry to say I've had some of those experiences. But this from has been more accepting. My wife and I have discussed the difference in the "men's groups " and the wives' groups. I'm afraid too many men have been taught to compete at all cost. Our loss. l claim it too. It's a big part of what keeps me struggling to the end. Not to my benefit.

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A lifetime of competition against each other now making the necessity of working together difficult. Good analysis Rmanns.

Currumpaw

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Oh my. Thank you so much for sharing that clip. And yes, the funding disparity is notable. New treatments do seem to be shooting up. l read through MD Anderson's Moonshots yesterday. It's encouraging. Probably not for you or I but for my sons.

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In the mid 70's I read "The Tibetan Book of the Dead" and Moody's "Life After Life". I believe I have made my decision. Should my time look as if it will end because of prostate cancer, I hope to be capable of Mahasamadhi. I prefer to leave this life on my own terms and if possible, by using the power of my will and mind. But isn't VSED, voluntarily stopping eating and drinking, just a slower way to get there? I do not think I could tolerate hospice care. I have been very independent in my life.

Different cultures, different beliefs, we all meet our end somehow. Is that a design flaw or is this terra firma we tread a training ground?

I believe that I would prefer to meet my death alone.

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Thanks for bringing up this subject, I too am interested to know others experience or knowledge. I’ve read all the responses and here is my contribution.

Twenty+ years ago my father-in-law fell as he was getting out of a car. Subsequently diagnosed as PC met to the spine. He was bedridden for 2 years and died in his mid 60s. It was undiagnosed cancer until that event, and by that time his mets was all over. A few years later similar event happened to my brother-in-law. Same thing. He had surgery to remove the spine met followed by radiation. He had physical therapy, regained walking ability, but within a year he fell from bed, can no longer do any physical activity by himself, and was bedridden for another 6 months or so and passed. He was in his late 70s. Today, our treatments, watching for mets, etc, is far advanced, but I suspect the eventual mets will happen. I dreaded this possibility.

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I've just started using a cane for those reasons.

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Okay Guys (and Gals)... when I go I'll come back and let you all know how it was. And that's a promise.

Good Luck and Good Health.

j-o-h-n Monday 09/10/2018 5:47 PM EDT

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I can only tell you my experience of my partner, aged 44 advanced pc, extensive bone mets including skull .I was told they don’t think any bone was spared from mets. The week leading up to him passing away, he was struggling to walk, appetite had depleted and drinking less. I had noticed changes in his breathing, - can’t really explain it, just different. He wasn’t aware of it himself as when asked he said his breathing was fine. Towards the end of that week he had uncontrollable pain in his legs, he was already on 70mg of morphine but it wasn’t doing anything. I called the doctor out who upped the morphine. Still not helping, he couldn’t sleep, having to sit upright, what I didn’t know at the time was that he was dying and by sitting up, your getting maximum oxygen around the body. How it was explained to me was that if I had just gone for a run as much as you would want to - you wouldn’t lie down would you ?

The next day I called doctors again and they sent an ambulance. He was taken to hospital where he was admitted and his sats came back at 79% , he was in respiratory failure. All tests came back fine no blood clot, no infection. The cancer had taken over. PSA 50-537 in 8.5 weeks. They couldn’t get on top of his pain, and he was on maximum oxygen. Cut a long story short, he was stable until he decided to get out of bed in the middle of the night to go to the toilet (didn’t call a nurse) but a nurse had seen he was out of bed and thought it was strange as he had not been out of bed so stayed with him luckily. as he tried to get back in, he became disoriented and he died 20 mins later. He had taken his oxygen mask off and his body was so exhausted it couldn’t cope without having that constant oxygen. They asked him just before he became unresponsive if he was in pain and he said no, so they had got on top of that. I was called but missed him by 3 mins ( something I’m still devastated by). I was told that his breathing became further and further apart and then he just slipped away, no gasping, almost like in his sleep. Regardless if he had got out of bed he only had days / weeks left. He hated hospitals, from admission to dying was only 14 hrs. Not where he wanted to die but out of our control. RIP my darling Steve.

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Thank you. I'm sure that was difficult but so helpful to many of us.

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It was difficult but I am slowly coming to terms with it. I had so much anger that I thought they could/should have done more throughout having this disease. A nurse stayed with him until he took his last breath which I will always be internally grateful for and a comfort knowing he wasn’t alone.

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I've just made an appointment with MD Anderson Center for Targeted Therapy for later this month. This is their entry to phase 1 trials. I don't remember who suggested the strategy of taking a first small step, but thank you. l very much want for there to be some magic here. I can figure the odds but I've at least helped to clarify my motivation.

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