What is it like to die from prostate cancer?

Hello Daughter,

It is clear that you are really struggling with your dad's situation and not sure you are doing what's best. I agree with Special Lady. Your dad is only 71 and is still very active. Is his doctor a urologist? He needs to see a prostate cancer oncologist who can intelligently describe treatment with hormone therapy. I was on Lupron for 12 months and only had rare hot flashes and no fatigue. There is a drug like Xofigo for bone mets. So, a PC Oncologist may prescribe Lupron plus Xofigo or another combination that could give your dad more years of active life. Point is, with more time, a cure or long term remission therapy may be found for prostate cancer especially with the advances in immunotherapy. And, who knows that a cure may also be found for Alzheimers. Look at Glen Campbell. He still did a long tour with Alzheimers.

God will take us when it is His will to do so. And, no one wants to give false hope, but I don't believe in giving up...never give up. However, as others said, if your dad refuses any treatment such as hormone therapy then you have done all you can and will just help take care of him.

Best to you and your dad.

Robert

I find myself spending a lot of time now reading about God. I'm a Christian and look forward to meeting Him. Thankfully, I've had a pretty good and long life. Married 46 years, two wonderful sons and 4 beautiful grandchildren .
Like others have said, we have to die of something. In a way it's comforting to know that perhaps I now know how. But maybe not. At least I can use all the tools available to beat back this beast. I take it as a challenge just like other challenges I have faced over 71+ years. My urologist has bet me a bottle of fine red wine that I will not die of PCa. On the other hand, I saw a medical oncologist recently who said I'll be dead in five years! Lol
So I try to have fun every day ,do what I must to fight the beast, and live life to the fullest while looking forward some day of being with my Lord and Savior.
Bob

When my husband was diagnosed three years ago, one of the first things he asked me was, "How do you die of prostate cancer? What happens?" I did some research and told him this- first, most men die WITH prostate cancer, not because of it. Second, it depends on where the mets are. Bones are very common, that weakens the blood because bones make most of your red blood cells. Liver, lungs and brain mets are less common, but more quickly fatal, usually. Mostly as described above- organ began to fail, lethargy, sleepiness, weaknesses, etc.
One thing that might help you deal with this is to PLAN. Even before he was diagnosed, we had made lots of these decisions. His dad's death had helped us realize that we needed to face them and deal with them. For example, we both are full cadaver donors. Our bodies will go to a medical school or to Anatomy Gift Registry (a great organization that gets body parts to medical researchers). There will be NO COST to our families for grave sites, coffins, etc. They can plan any kind of 'life celebration' or service that will give them comfort. We've made some suggestions for them. We have already completed advance directives and have health care power of attorney documents completed. If/when he worsens (just got his 3 year PSA- another zero- YAY), we will complete a MOST or Medical Orders for Standards of Treatment - sometimes called POST- physician's orders.... It is similar to advance directives, but VERY clear, all on the front and back of one page, and you can give a copy to all your docs and keep one to hand to EMTs or emergency room or other hospital people. It makes your wishes very clear about specifics like feeding tubes, CPR, antibiotics, breathing machines, etc. and doctors are REQUIRED to follow it. It also helps take that burden off children and other family during a difficult time. We'll also fill out a "Do Not Resuscitate Order" as North Carolina is one of the states that requires EMTs to attempt CPR, etc. unless you hand them that form.

The Ageing With Dignity (5 wishes) site mentioned below might also be very helpful for you.

Having this in place has eased both our minds. We won't have to think about it when times are tougher. We've already made those decisions while are minds are clear and could focus on them and not be distracted by the moment. We've talked about it with each other, and with our kids. I know having these things in place it made things easier when his dad died.
You might find these websites helpful

Advance Directives, DNRs, Living Wills, MOST / POLST / POST
http://www.goodmedicinesf.com/
http://www.agingwithdignity.org/five-wishes.php
http://familydoctor.org/familydoctor/en/healthcare-management/end-of-life-issues/advance-directives-and-do-not-resuscitate-orders.html
http://www.caringinfo.org/i4a/pages/index.cfm?pageid=32899
http://www.putitinwriting.org/putitinwriting_app/index.jspp
http://liv-will1.uslivingwillregistry.com/individuals.html
http://www.nolo.com/legal-encyclopedia/do-not-resuscitate-orders.html
http://en.wikipedia.org/wiki/Physician_Orders_for_Life-Sustaining_Treatment
http://www.rocketlawyer.com/article/most-post-molst-and-polst-documents.rl

Hospice
http://www.hospicefoundation.org/
Organ Donation, Whole Body Donation to Science, Funeral Planning
http://www.agingwithdignity.org/five-wishes.php
http://organdonor.gov/index.html
http://www.med.ufl.edu/anatbd/usprograms.html
http://www.anatomicgift.com/
http://www.funeralplan.com/funeralplan/alternative/donate.html
http://ag.ca.gov/consumers/pdf/CELW.pdf

I question this post from a first time poster and feel it does not benefit the community. With so many going thru so much to live. This question posted this way should be removed. If the poster has questions about end of life care or specific health issues that can be addressed individually. The post is insensitive and honestly not sure what the intentions are again please moderator remove.

I am in agreement with fellow moderator, 142. As long as the posts do not violate the established rules, this is an important subject worth discussion.

Jim

"If we can talk about sex openly, we can speak frankly about death. "
Tim- YES! That's what I was trying to say (in my too many words above). It is one conversation that really should be had in families LONG before it becomes an issue. Unfortunately, many of us don't want to think about it, much less talk about it. Our family knows our wishes- and have for more than 15 years now. My mother-in-law is dealing with many health issues and will turn 80 later this month. I am her caregiver and have her power-of-attny and health-care power-of-attny and am the one designated to INSIST that docs follow her wishes. We talk about this issue regularly. I want to be sure she hasn't changed her mind about anything. She often brings up things, too.
Talking about it makes is LESS MORBID, not more. And it actually helps speed the grief process and healing afterwards, too.

I accessed this thread because I want to be able to plan the end of my life. Not precisely or anything like that, but I don't want to leave my wife with a ton of crap to deal with that she doesn't know anything about.

I'm 71, diagnosed a year and a half ago. Gleason 4+4=8. RALP and radiation. Seminal vesical involvement. Lupron. PSA has declined from 1.4 post surgery to the current 0.1 at last test. Next test, we hope for it to be undetectable. Based on everything I can read, I most likely have maybe 5 more years unless they come up with some cure. I have a positive outlook on life, no morbidity here.

However, I have a lot of irons in the fire. I want my wife to have as little to deal with as possible. Therefore, I desire to know, as the end approaches, what kind of function will I have left? Will I be mostly functional and lucid to use computer and do tasks at a desk up to, say, 4 months before death, or will it be longer?

I realize it just depends, but I was hoping for some guidelines to help me plan. I do understand in the last months, that I will be fading away, and possibly dealing with pain if there are bone mets. That's OK, I can handle that.

Hope someone can really offer some insights. Thanks!

clewis1945 said...
I accessed this thread because I want to be able to plan the end of my life. Not precisely or anything like that, but I don't want to leave my wife with a ton of crap to deal with that she doesn't know anything about.

I'm 71, diagnosed a year and a half ago. Gleason 4+4=8. RALP and radiation. Seminal vesical involvement. Lupron. PSA has declined from 1.4 post surgery to the current 0.1 at last test. Next test, we hope for it to be undetectable. Based on everything I can read, I most likely have maybe 5 more years unless they come up with some cure. I have a positive outlook on life, no morbidity here.

...

Hi clewis1945,

First of all, I couldn't agree more with getting your life in order. The reality is that we should all do this. I'm not going to die of PC, but I have organized a file of what I call my "Disaster Recovery" information. I managed an IT team for a while, and we always had disaster recovery plans for the business in case our server room burned down; that's where I got the name. A "disaster" in my home case would be getting hit by a Mack Truck or some such incident. Anyhow, great idea on your part to get organized.

I do want to let you know that you are showing lots of signs of going well beyond the "5 years" you referenced, however. Your last test with PSA of 0.1 is an indicator. PC may take you one day, but there are statistics out there for cases like yours showing the typical longevity is more than you are figuring.

Men who are initially diagnosed with metastatic disease fare more poorly in the statistical categories...but this does not appear to be your case from what you've written. There are lots of treatment options in your future which are all intended to extend your life so that you DO die with PC and not from PC, and these have extended many men in similar cases upwards of 20 years (which exceeds your life expectancy at this point...right?! That's the objective!) For example, the MEDIAN number of systemic therapies received by men in your situation is 7. You've had one (systemic therapy), Lupron, and it seems to be doing quite well. You gots a ways to go!

The notion mentioned my Moonlitnight that "men die with and not from" prostate cancer is a misinterpretation of the true fact saying that most men will die with and not from prostate cancer.

You're doing great...but I, too, would get your "irons" pulled together into a "disaster recovery" plan...and watch out for Mack Trucks!

Post Edited (JackH) : 1/22/2016 8:40:53 AM (GMT-7)

Since I'm still here I can't opine. But I do think about it now and then and hope I die of something else first. I'm 72 and have had a good long life notwithstanding that my dad lived til 94! I really feel for guys who get this lousy disease at a young age.
If I (when) I get mets which can't be destroyed with spot radiation (I've already had 143 f... ing grays!) I'll opt for serious pain killers like morphine and kiss my a..s goodbye!
Bob

Well, new member and first post - and almost turned around at the door and left again.

Some of you are unhelpful and sanctimonious. I arrived at the site because I asked exactly the same question as OP and had to read post after post of unhelpful platitudes before someone had the guts to try to provide some information.

Not everyone approaches this situation in the same way. Some want to live in the moment; some are comforted by one faith or another; some - like me - want to understand the detail, inform our choices and plan.

Where you are in the disease affects that too.
I am 53 and was pretty saguine about initial diagnosis - I assumed early stage. MRI agreed; gleason was 3+4. PSA 16. Not too terrible.
The flooring moment was the bloodtest a few months after a radical prostatectomy, where the PSA was 2.2.
So, into radiotherapy - and a 32% chance of success.

Therefore a 68% chance of it being "life shortening" (my consultant's term) - when pressed, this equated to 5-10 years.

As someone enjoying full time work currently, and with dependents, this presents a lot of planning questions. It also, for me, prompts a high degree of curiosity about what to expect and when. Up to and including the final days of life (I'm an advocate of voluntary euthanasia by the way and no great fan of the indignity that we force into end of life currently).

Of course I hope to be one of the 32%; and, of course, I strive to be (and generally am very) healthy. But I have a pretty high chance of dying from PC itself rather than dying with it. So it's not unwarranted to enquire what that entails.

If others are not interested or find it uncomfortable, that's fine - tune out of the thread. But fobbing someone off for asking with "we all die" or, worse, the ridiculous suggestion that the question should be censored, is worse than unhelpful.

</rant>

I read over this thread and found some good information which is what I focus on. Its the internet and has controversy - no surprise. The simple answer is everyone is different... did it effect the bones in your head thus your eyes and brain... or was it in your upper or lower spine... or did it effect an vital organ... or did the medication itself cause a cascading event? Each progression path will lead to different types of outcomes. I also think it's difficult to open yourself up on some website and discuss ones demise. I have great appreciation to those who are willing to share such personal and difficult information and ignore the internet noise around it. Keep up the fight and good luck to all!

Deadeye,

I had the same question you did when I first came on this site and the first thread I read was this very one. It didn't answer my questions either. I have since concluded there is no real answer. The disease too complex for that. I too have swallowed the bitter pill of failed treatments. My uro said get a RP and ART and all the will be well. Boy, was I naive! As far as survival, that is hard to predict as well with PCa. My first MO said median survival for me was 3 years. My new MO says median of 6 years. I am shooting for 10 years.

1deadeye,

been here many years, I hear where you are coming from, I get your point.

my urologist gave me 8-10 years, I am coming up later this year on year 9. I have been dealing with so many quality of life issues - many severe in nature, that I have no thoughts on quantity of life. One can only suffer so many years, there are things worse than death.