What is it like to die from prostate cancer?

It just came to me: Steven Wright

Mel

Octorabo...Thank God I found AA some 20+ years ago, and what I have learned in those rooms has prepared me for ANYTHING that comes my way. One sentence in the book Alcoholics Anonymous has saved my bacon on SEVERAL occasions. It begins: And ACCEPTANCE is the answer to ALL my problems today....."

CONGRATULATIONS to your daughter for 9 months.

If someone is STILL concerned about DYING, please read again the first paragraph of this post.

Hello, this is my first posting on this site as ive been on cancer forum previously and had some very good imfo from the members thereon.i was diagnosed about 3 months ago now at age 44 with pc T3A N2 MI GLEASON 4+3-7 so only recommended course of treatment is Zoladex hormone injections which i am now having 3 monthly.My situation will almost certainly take my life at sometime in the future and it is not an easy thing to deal with as all of you guys are quite aware of.I have consoled myself with the following thoughts.

1. age is just a number its what you do within your life span that is important.

2. death should not be feared,if there is an afterlife then i only hear good reports about it !!.If theres no other place then its just a big long sleep undisturbed and whats so bad about that ?

3.dont waste time worrying about the inevitable enjoy whatever time weve got left making the most of every day.

leeanglo said...
Hello, this is my first posting on this site as ive been on cancer forum previously and had some very good imfo from the members thereon.i was diagnosed about 3 months ago now at age 44 with pc T3A N2 MI GLEASON 4+3-7 so only recommended course of treatment is Zoladex hormone injections which i am now having 3 monthly.My situation will almost certainly take my life at sometime in the future and it is not an easy thing to deal with as all of you guys are quite aware of.I have consoled myself with the following thoughts.
1. age is just a number its what you do within your life span that is important.

2. death should not be feared,if there is an afterlife then i only hear good reports about it !!.If theres no other place then its just a big long sleep undisturbed and whats so bad about that ?

3.dont waste time worrying about the inevitable enjoy whatever time weve got left making the most of every day.

Lee:

T3a indicates that the tumor is extending through the capsule on one side.

N2 means metastasis in a single lymph node, more than 2 cm but not more than 5cm in greatest dimension; or multiple lymph node metastases, none more than 5 cm in greatest dimension.

M1 means: Distant metastasis.

Is the medic who prescribed Zoladex as a solo therapy a urologist? Please let us know, it's important.

Properly treated, you're far from a dead man.

Leeanglo, your situation is difficult, to say the least. You're too young to have to deal with this crap. If your urologist sees a potential 5 year window, there is much that can happen in 5 years. First, that would give you 5 years to enjoy the benefits of the perspective you shared in thoughts 1, 2 and 3.

But more importantly (or also importantly) There are new drugs in the pipeline that offer hope. In fact, I would make sure your urologists helps you get in line for trials so that you are treating the disease in an entirely new and DIFFERENT manor in 5 years!

Last thing I want to do is give anyone false hope... including you, including myself, but you may heave read a little about recent posts re Provenge, which showed to increase lives, and XL184 which "In very early testing, 19 of 20 patients showed an improvement in the scans used to determine whether cancer has spread to the bone".

If there are meds out there that can do both of those, i'd like to see you getting in line for a cocktail of BOTH. Who knows what a few years can bring? Good luck to you guy, i'm certainly thinking about you today!

The article touching on both drugs: http://www.nytimes.com/2010/11/18/health/18prostate.html?_r=2

I find that I am contemplating this frequently now. HRPC with a PSA of 32 and climbing. Lots of mets to my bones and some pain is beginning. I am 56 y/o with a lovely wife and two 5-year olds. I wrote the following:

Preparing
Known, but not yet known
No more snake oil
Hope and false hope
Sadness
Well wishes
Awkwardness
Faith
Help me in my unbelief
Pragmatic
Philosophical
Reflection
Melancholy
Depression
Things undone
Things hoped for
Legacy
And what about my children?
We live like it will never happen. We act surprised.
And then . . . it is time.

STXDAVE- had replied to this thread on page #2 if your remember Dave died from an unrelated event from PCa and it was shocking to hear that on this forum. Ralph V. was a good friend of Daves and could tell alot about him and his journey. I met Dave on other PCa forums and remember him, maybe it is better to have died accidently and quickly than from the pain and agony that can be associated with this, I say maybe and it is presumptive thinking. Last year Gordy passed away on this forum, he was a good contributor on this site, he had complications within his treatments and sadly probably endured more than some others.

Dr. Scholz mentions T.I. therapeutic index......your trade offs between treatments and quality of life....this is another area of great concern to patients facing such unknowns in incureable scenarios. One might have to consider, how much do you wish to tolerate or endure within all these treatments. We have a guy in hospice right now that has decided many months ago that he had enough of the drugs and protocols and decided to live out the rest as is, he has pain management and is inspirational type positive guy and on facebook, Tony C. knows whom I am talking about...you can decide if you wish to mention whom this is. He is a great guy with a righteous attitude even within his hospice.

Hello, All

I have done lots of research, and this is the first forum I have actually wanted to belong to. Thank you for all being so inspiring and honest. It is extremely hard to find hard truths.

I think I offer a different perspective you may enjoy. And I feel like I should be online so someone in a similar situation can find this post.

I am a young daughter of a dying man. I take care of him and and am trying to prepare myself for his death from prostrate cancer, stage 4, bone met., PSA in the hundreds, tiger type, etc. The rare kind that spreads fast. Doctors gave life expectancy of 1 year, 1 year ago.

My dad has early-onset Alzheimers, which complicates this. He is 71, and very physically active, walks 5 miles every day. Never complains of any pain, but when he thinks no one is around, talks to himself and may have pain. It is hard to know how his mind is processing bodily situations. At moments, he has such clarity about certain sensations, like not being able to urinate, and then I'm not sure if he can process aches in his bones, or extra feelings of tiredness.

It makes for a confusing situation sometimes, taking care of him, and I am often plagued with guilt for dismissing some things. I often worry I don't know what it's like to have a tumor growing in my body, or cancer cells spreading in my bones. It's my job to dismiss some fears for him, like, "your catheder bag just got your underwear all wet. Don't worry, everything's fine. We just have to get this wet clothing off."

But maybe I shouldn't dismiss his anxiety when he is peeing all that blood, or feeling so disoriented.

I'm trying to say; I'm at a loss sometimes. And I don't want to make some big mistake that could lower his quality of life sooner than it has to.

We have refused to do any chemo, radiation, hormone etc., because of the side effects. Some would say, i would love to die from prostrate cancer than spend years and years with Alzheimers.

We are blessed that he is enjoying his life. He writes software for fun. We vacation with family. He is not at this point yet ready for hospice, but that could change any minute.

My question for you is:

What should I be looking out for when you are dying from this naturally, without treatment?

Does he have a high chance of falling and not being able to move?

Is there a high internal bleeding risk?

I guess, I'll stop there. That was three questions. And I have a lot more. I can't ask these questions around him. He wants to only stay positive.

Thank you, for your time,

A daughter and hospice aid

An old friend from college died of prostate cancer five years ago. His age was 66. He lived nearby, so I was able to witness the disease progression which took six years out from surgery (I had been diagnosed and had also had surgery by then). My friend experienced no pain until about six months before the end. After that, spot radiation and medication handled the pain, and he reported not feeling pain at all (note, the experience of pain is notoriously variable). He just slowed down and experienced steady weight loss. No visible tumors, unlike some cancers. He took to bed about five days before the end, was able to stay at home, and his wife had hospice support. He was not comforted at the end by religion because he was an adamant non-believer. And that was the end.

Newspaper Lover
Age 71
11/09 DaVinci surgery upstate NY; nerve bundle taken; clean margins, clean seminal vessels, no incontinence, alas no erections.
06/11 PSA re-emerged.
Gleason 8
Time to recurrence 18 months
Three month doubling time (summer 2011).
PSA rose from .07 on 06/11 to .17 on 11/11.
09/11 hernia surgery to repair hernia resulting from the DaVinci.
10/11 Moved management of my case to Memorial Sloan-Kettering in New York City.
12/11—06/12 SRT plus HT (Lupron, Casodex).
07/12 – 06/14 Five six-month tests returned PSA "undetectable" and testosterone in “normal range”
12/14 PSA .06
01/15 PSA .08.
07/15 PSA .11
07/15 CAT and Bone scans find no evidence of metastatic disease..
Currently receiving no treatment. Next PSA January ’16.

Thank you so much for your quick responses.

I just received some news today, that I thought I'd share in hopes it might be helpful.

I was just told today by his doctor that untreated prostrate cancer (as he has) is very rare now. He doesn't see prostrates covered completely in yellow cancer growths (from scan) anymore. Most choose to do castration, by either hormone or surgery; or chemo, radiation, etc. Because this prolongs life so much longer, 10, 15 years. However, when your mind is deteriorating (as is happening with my dad), these treatments would mean a significant quality of life reduction to one who already is experiencing dementia. Ideally, I would think you would want the body to deteriorate as the mind does. But I know this is hard to say. Could it be God has given him terminal prostate cancer and if you extend his life with treatments, are you just giving him a sentence of life without the benefits of testosterone and the side effects of menopause, when the mind is losing the ability to function. Did God give him terminal prostrate cancer so he doesn't have to die from Alzheimers? Or would he spend the next five years fighting it, in and out of procedures, side effects, recoveries, etc. just to die then, miserable, cut open and depleated?

I find myself asking maybe we all have our predestined time to die.

The doctor said 18 months is life expectancy once the cancer is no longer responding to treatment, which is the category he is in, since we have never done any treatment. (Hence, called untreated prostrate cancer or naturally dying from prostrate cancer, ie. what happens if i do nothing?

For my dad, when it was caught it had already spread to the bone, and dementia was advancing quickly.

I was told today, the top two causes of death in the end will be:

1. large bone fracture, such as pelvis, since that is so close to the prostrate. The cancer eats the bones from within, til they crumble from the weight of the body. He will be paralized. The pain will be so great, the med doses will be so high, it make it hard to do anything, like eat, breathe, etc. He will die as the body deteriorates, the organs unable to function any longer.

2. Or you lose the kidneys. This is because the cancer infultrates the bladder, again almost touching each other. The cancer is growing it's own blood vessels and the blood clots fill in the bladder and one can't urinate. Then the kidneys get infected and septis (death by infection) happens within 24 hours. Of course, you can remove the kidneys and buy time, but in our situation, this is not helpful, since quality of life without kidneys is so poor when one has dementia.

I'm so sorry if I'm too descriptive, but for me, I wanted to prepare for the worst, and now I have. The positive note, is this is a relatively quick death, unlike Alzheimers, which we thought we were having to accept.

Let me end, by saying the most important thing.

I'm not a doctor or a nurse and this is only my interpretation. I am sure I got some things wrong. Hopefully, others will correct me.

I have visions of a man, in a skeleton body, confined to a bed, gasping, grasping at me with arms desperate for relief. Eyes, terrified, but unable to communicate with words. Can't anyone put him out of his misery? I feel so guilty for not having the courage to do it.

Sincerely,

A daughter who loves her dad, and cried her eyes out today, and tears up while writing this.

Hi there daughter, sorry that you and your Dad are going through this. It is not easy. Part of me does not follow your line of thinking. Prostate cancer and Alzheimers are both diseases that you do not die from soon. There were men, with metastatic disease, that did really well on combination of hormone therapy and then later other medication. My Dad is doing fine and he is in 4th year diagnosed originally like your dad, with metastatic disease. Alzheimer disease is also one that can be controlled for a long time. What he will die from, you nor anyone else knows, nor should you try to solve that puzzle. I think you are basing your actions as a family on many wrong presumtions. If your Dad is physically active, writing software, to deny him an easy treatment for PC like hormonal injections would be cruel and negligent. The side effects of hormone injections are there (hot flashes, fatigue) but most men are able to continue with their daily lives. Hormones will often take away the pain, too.

I do not think it is for any of us to decide what would be "easier" way to go, especially the timing is wrong. He is nowhere close to dying, and you have an obligation, as his daugter, to see that he gets the best care available in your country for PC patients, and I am sure that includes hormonal injections, at the very the minimum. Some people have numerous diseases, and you treat each one separately, then evaluate the patient and fine-tune the therapy. If he refuses therapy, knowing full well what he is doing, THEN there is nothing you can do. But I doubt that all the information is available to him to make a good decision, and it sounds like his doctors are not helping him understand either. To tell him he has 1 year of life is irresponsible from his doctors, as just on this forum, there are dozens of men with similar numbers who have beaten that prognosis. Best to you and your Dad.

I remember Randy Pausch's lecture. What an inspiring story. His lecture must have resonated with me because for the most part, I do feel like a tigger. Just that sometimes I am a tired tigger. But the mindset is still a tigger. For many on this site, the thought of dying from prostate cancer is very slim. For others, the reality is much closer. I choose not to think about what dying is like, but rather, I choose to find the beauty in life and find ways to help others. Kind of my atonement for the stupid crap that I did in the past.