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Is extending life always the best choice

cchqnetman's picture
cchqnetman
Posts: 97
Joined: Sep 2012

I hope no one if offended by this post. If they are, I apologize in advance. The reason I am posing this question in this forum is I have often wished I had someone to talk to whom I had no emotional involvement hoping I would get more logical answers than emotional answers.

History:
Current Age: 62
Employment status: Working but thinking of retiring
Marital Status: Married
Children: One (wonderful) 39 year old daughter

7/1999: Left/Right biopsy: Right side (no further specificity was given) had “a single focus of atypical glands”. PSA was 8.2 pre-biopsy.

8/1999: Lab results were read by a second lab (Air Force Institute of Pathology) that diagnosed it as “focus of carcinoma, well differentiated, nuclear grade I.

12/1999: 6-Core biopsy: All cores negative for cancer.

4/2000: Veterans’ Administration Hospital Lab examined the slides from Air Force Institute of Pathology and concurred it was “invasive prostatic adenocarcinoma” and added the comment “too few glands to Gleason Score”.

4/2000: 12-core biopsy: Right Mid (RM) and Right Mid Lateral (RML) positive for Prostatic Intraepithelial Neoplasia (PIN).
Therapy chosen: Active Surveillance (AS)

12/2009: 12-core biopsy: All cores negative for cancer, no PIN

9/2012: 12-core biopsy. Right Lateral Base core with 5% involvement, Gleason 3+4=7 and PIN; RML core with 50% involvement, Gleason 3+4=7; Right Lateral Apex core with PIN and Atypical Small Acinar Proliferation (ASAP). Pre biopsy PSA 7.7

From 1999 to present PSA has been anywhere from 8.2 to 1.5 – no real trend.

Other health issues: Degenerative Joint Disease (DJD) in neck and lower back; repeated kidney stones/Stage I of kidney disease. Treatment for DJD resulted in a perforated ulcer and precluded any further use of Non-Steroidal Inflammatory Drugs (NSAIDs). NSAIDs were also suspected in the cause of kidney disease.

I am approaching the decision on what, if any, treatment to seek for my prostate cancer. I sometimes look at the possibility of getting treated as extending the quantity of life but decreasing the quality of life. I like to look at things from a statistical point of view as much as possible (the engineer in me). If I could graph quality of life versus time, the graph might extend farther to the right (more time) but on a lower horizontal scale (less quality). I fully realize both scales are very subjective and guesses at this point as I don’t know what the treatment would do to the quality of my life or to the duration of my life. I am pretty much convinced any treatment would decrease my quality of life – I just don’t know by how much. My DJD causes me almost daily pain and/or headaches which already has my quality of life at a sub-normal level. I have sought and received some treatment for the DJD but at this point the neuro surgeon is suggesting fusing the joints in my neck – at least three of them. I can’t imagine what that would be like. I am not sure I want to imagine that. I think I am looking at the possibility of decreasing my quality of life even further to extend it. I ask myself why I would do that.
If you have read this far, thank you! You are a patient person.

I realize this post isn’t going to win any “best in category” awards but I hope to get some honest comments back. Does anyone see my point? Has anyone every asked similar questions?

Thanks

David

laserlight's picture
laserlight
Posts: 165
Joined: May 2012

David;

Prostate cancer sucks, but the one thing that I find myself doing on a daily basis is to fight. You know as well as I do that the Military taught us to fight and not give up.

This PC so far has been a fight for myself, I am tired of the doctor appts, lab tests and all of the follow ups. I have had more doctor visits in the last 18 months then I have had my entire life.

I work in the semiconductor industry, so the engineer in me wants to take over at times, but I have found that I have to take a different approach here.

I am always watching lab results and numbers

I for the most part have found that this is a daily fight, only the men with this monster can know what I am talking about.

It is ok to feel bad about this,

I am going to retire next year, I am 62 years old, but the constant work load has worn me out.

The other day I took off and went into the woods and spent couple of hours target shooting, now I know that this might upset some and for that I to apologize. But this was the best time I had in the last 18 months. The next time my son will be with me and we will have the 50 cal out.

I do think that we all need to take a break from this PC and clear out minds. It is true that we might die from some other illiness.

You are a Vietnam Vet and Brother we need you here, just as I am.
I have asked myself many questions about this.

The one thing about this is that we need to monitor and always watch.

Hope this helps

Kurt

cchqnetman's picture
cchqnetman
Posts: 97
Joined: Sep 2012

Kurt,
Thanks for the reply. I realize the military taught us to fight and not give up but there is a point when you are facing overwhelming opposition and fighting is futile. If fighting is just going to make things worse I wonder what the point is. I do appreciate your taking the time to comment. Thanks!!!!

David

hopeful and opt...
Posts: 1293
Joined: Apr 2009

may not be helpful., so I strongly recommend that you seek a professional to speak with.

Anyway this is my viewpoint:
To be honest, my life is not perfect, with other medical and personal problems, however, I chose to look at the bagel, not the hole. I look at the 98 percent that is wonderful, not the 2 percent...so I work at enjoying the moments with what I have. I focus on being very positive in my interpersonal communications. People think that I am upbeat, which I am, and enjoy being in my presence, as I do being in the presence of other upbeat people....it is contagious.

By the way, I suggest that you associate with upbeat people, ie clergyperson who is upbeat(if not change to another one, even if it he/she is from a different religion), and do things that you enjoy doing, and not do things because you think that it the thing to do....basically do your best to do positive things and have a positive outlook on life.i

Life is wonderful,

Enjoy the momemnts

cchqnetman's picture
cchqnetman
Posts: 97
Joined: Sep 2012

Hopeful,
Thanks for the comments. I am not sure I agree with your statistics (98 vs 2 % - Ha Ha). I am not much on religion - I don't think there is a spiritual god. I do believe that everyone creates their god and if that does them good I am happy for them. I don't knock anyone who believes in god or religion - it does a lot of good for them and society. I just can't get past the illogicalness. I was taught (right, wrong, or indifferent) that if you are good, obey god’s word, and accept him as you savior, you go to heaven. If you don’t you suffer eternal hell. I just can’t see that as being a fair offer. To me it is like saying give me your wallet and you walk free – don’t and I shoot you. You have a choice but is it a fair choice. I kind of think that is considered armed robbery. I am not so sure I agree with “life is wonderful”. If ity were I would like to enjoy it. Please understand I am not arguing with you – just saying how I feel. I do appreciative your taking the time to think about my situation and comment.

David

hopeful and opt...
Posts: 1293
Joined: Apr 2009

I should have said if you are religious and attend services find an upbeat clergy person....basically, what I am talking about is attitude toward living life. At one time at this site we had a thread where we posted positive actions that we did. (I felt better when I posted positives, additionally, when I read the positives of others, it made me feel better).

David, when we, get diagnosed, with this beast, we all go through shock, and have all those negative feelings for at least a few months. Sometimes we get over it with time, but sometimes the doctor can prescribe something to help, or if needed, there are professional to talk with, who are trained to help

cchqnetman's picture
cchqnetman
Posts: 97
Joined: Sep 2012

Hopefull,
I wasn't complaining or upset with your comments about clergy. I fully realize that gives a lot of people comfort and it is probably naturaly to assume it would others. I do appreciate your taking the time to comment!!

Thanks and best wishes on the road ahead of you!

David

ralph.townsend1's picture
ralph.townsend1
Posts: 352
Joined: Feb 2012

But remember you have a lot of people counting on YOU. This Monster will control you if you let it and will destory you. You can fight the pain and endure! I have five different diesase's from the Agent Orange and know the fight you are up against. We have made it through Vietnam and we will make it through this battle.

There is a lot of help at VA hospital and it takes a little time find, but it is there from depression to PTSD!

Good luck

God Bless!!!

djs123
Posts: 102
Joined: Jan 2012

I'm glad you posted this, it's good to have an outlet for the feelings you can't share with those closest to you for fear of hurting them. This is a good safe place to do that.

Being the wife of a man going through PC and now quite possibly further complications, I understand your fear, your anxiety, no doubt your anger and your depression.

My husband, although he doesn't use those words, I know feels quite the same way, I'm sure many men and others going through cancer treatment do and question "what's the point".

To speak to djd, I had a neck fusion 2 discs, knee surgery & shoulder surgery, all due to an accident several years back. The neck was tough and it took me about a year to get back to full mobility. It was rough but it was so totally worth it. I now play golf, ride a bike, walk, etc.

I am not an expert or a professional, but I believe you may be suffering from a deep depression, understandably so. During the 2 years prior to my surgery, doing pt, pain meds etc, there were days I simply stayed in bed and wouldn't move. I remember getting up shortly before my husband would come home from work, get dressed and pretend I had a busy normal day like everyone else. Finally after much conversation with my doctor, he put me on zoloft (antidepressant). It completely changed my life for the better. I was much better able to cope and my attitude was much better.

We also have a male friend who had esophogeal cancer and was ready to give up. His wife insisted he get treated for depression. It helped him tremendously (by the way, his odds were very slim and he is now in remission, after 3 years of barely living).

Please consider all these factors, your wife, your daughter and the fact that you've got a lot more living to do. An antidepressant may not be the answer for you, but certainly staying the fight not only for yourself but those that love you is something to consider.

God bless

cchqnetman's picture
cchqnetman
Posts: 97
Joined: Sep 2012

It is interesting to hear a wife's point of view. I think they suffer as much as we do sometimes. I just had a brother-in-law die. He was diagnosed about a year before I was and he went for the radical P procedure. It was downhill from there and pure hell for him and his wife. I have tried the antidepressant route to no avail (several times). Still thinking about the neck surgery. Trouble is with any of these problems the treatment is so irreversible.

Thanks for you comments and your point of view. It was a unique one. Thanks!!

David

djs123
Posts: 102
Joined: Jan 2012

I'm glad you posted this, it's good to have an outlet for the feelings you can't share with those closest to you for fear of hurting them. This is a good safe place to do that.

Being the wife of a man going through PC and now quite possibly further complications, I understand your fear, your anxiety, no doubt your anger and your depression.

My husband, although he doesn't use those words, I know feels quite the same way, I'm sure many men and others going through cancer treatment do and question "what's the point".

To speak to djd, I had a neck fusion 2 discs, knee surgery & shoulder surgery, all due to an accident several years back. The neck was tough and it took me about a year to get back to full mobility. It was rough but it was so totally worth it. I now play golf, ride a bike, walk, etc.

I am not an expert or a professional, but I believe you may be suffering from a deep depression, understandably so. During the 2 years prior to my surgery, doing pt, pain meds etc, there were days I simply stayed in bed and wouldn't move. I remember getting up shortly before my husband would come home from work, get dressed and pretend I had a busy normal day like everyone else. Finally after much conversation with my doctor, he put me on zoloft (antidepressant). It completely changed my life for the better. I was much better able to cope and my attitude was much better.

We also have a male friend who had esophogeal cancer and was ready to give up. His wife insisted he get treated for depression. It helped him tremendously (by the way, his odds were very slim and he is now in remission, after 3 years of barely living).

Please consider all these factors, your wife, your daughter and the fact that you've got a lot more living to do. An antidepressant may not be the answer for you, but certainly staying the fight not only for yourself but those that love you is something to consider.

God bless

cchqnetman's picture
cchqnetman
Posts: 97
Joined: Sep 2012

Ralph,
Appreciate your comments. I do realize there are people counting on me. I think that is the only reason I would ever consider getting treated. I don't want to sound selfish but I think sometime I am considering putting myself through hell to make someone else happy. Not sure that is fair. I guess nothing is fair. I should realize that.

Thanks again for the comments and your time!

David

cchqnetman's picture
cchqnetman
Posts: 97
Joined: Sep 2012

Ralph,
Appreciate your comments. I do realize there are people counting on me. I think that is the only reason I would ever consider getting treated. I don't want to sound selfish but I think sometime I am considering putting myself through hell to make someone else happy. Not sure that is fair. I guess nothing is fair. I should realize that.

Thanks again for the comments and your time!

David

hunter49
Posts: 200
Joined: Oct 2011

I think a lot of us think the same way. I would do radiation and or seeds. I know several men who have doen it and it brought them into remmission without side effacts. Everyday is a gift and enjoy it. Laser said a good point I went inot the woods this wee for the first time since my surgery last year. I was 49 and thought wow how much time do I have?? I know say the time I have will be spent living and that is it. Nature is a great mental health cure.

cchqnetman's picture
cchqnetman
Posts: 97
Joined: Sep 2012

Hunter,
I have thought of taking some time off. I had a motorcycle and used to go on long (>4,000 miles) trips every summer. The last 3 years my trips got nixed because of my health issues so I sold the bike. Thanks for taking the time to comment. I do appreciate your views.

David

Swingshiftworker
Posts: 626
Joined: Mar 2010

David:

The decision to forgo treatment and allow yourself to eventually die from your cancer and/or other diseases is obviously a personal decision that only you can make. The way I look at it, this choice (the decision to forgo treatment) is no different than choosing suicide or euthanasia and I believe that every person should have the "right" to chose to make this decision for him/herself.

I am not religious and I make no moral judgments about suicide or euthanasia. All I know is that it is an extremely difficult decision for someone to consider and that one must be in severe pain and/or beyond all hope of continuing to live a useful life to even consider it.

Someone I once worked with (a well-known & respected attorney) chose to commit suicide because he was suffering from degenerative hip pain; committed suicide and planned out his funeral services, including the playing of "The Streets of Laredo", which is a very sad song about the death and burial of a young cowboy, at his memorial.

So, here's some information that I've come across that should help you decide if this is the choice that you may need or want to make in the future.

Euthanasia ("the Right to Die") is legal in the Netherlands and Switzerland. Here are the links to the "Right to Die" organizations there:

http://www.nvve.nl/nvve-english/pagina.asp?pagnaam=homepage
http://www.exitinternational.net/page/Switzerland

A couple of years ago, I saw a DVD on PBS which chronicled life and death of several people who chose euthanasia in Switzerland. Chances are it might be rebroadcast again and it's well worth watching. I believe that it was the following movie, which is listed on Netflix but apparently has not yet been released on DVD, that I saw:

"Exit: The Right to Die (2006NR)

Showcasing Switzerland's acceptance of euthanasia -- a position endorsed by the Swiss since 1980 -- filmmaker Fernand Melgar's controversial documentary advocates for an individual's right to die. Interviews with terminally ill patients illustrate choices of people whose lives have become too painful to bear. Melgar further investigates the impact that the legalized suicide prerogative has on families of people wishing to end their own suffering."

Here's a detailed description of the movie where it's for sale for a ridiculous price of $298:

http://icarusfilms.com/new2006/exit.html

However, if you're a member of Netflix, I suggest that you just put it in your queue to receive it when it's released. It is a very moving and compassionate depiction of the what certain people (and their families) had to go through in order to choose and follow through with euthanasia. BTW, there's a clip from the movie on Exit's website above.

There's also another Swiss organization named "Dignitas" which assists people who choose euthanasia, which you can find here:

http://www.dignitas.ch/index.php?option=com_content&view=article&id=4&Itemid=44&lang=en

The issue of forgoing treatment and allowing a patient to die (but NOT euthanasia) has also been previously discussed on PBS here:

http://video.pbs.org/video/1512034909/

There are also lots of articles on the issue published on the Net. Just Google "euthanasia" and/or "right to die" and you will find lots of them.

I wish you well and support your decision regardless of the path you choose.

Ciao!

cchqnetman's picture
cchqnetman
Posts: 97
Joined: Sep 2012

Thanks for the thoughtful comments. I particularly like the honesty and “no moral judgment”. I have always felt that it is any person’s right to commit suicide. I am not sure I would term what I am doing suicide but I can fully understand why someone would look at it as such. I look at it as not doing something (treatment) as opposed to doing something (9mm exit strategy). I will certainly research the web sites you provided. I have a Netflix subscription but it is for streaming only. I might be able to find someone who has the DVD subscription. I may be deciding, or considering deciding, prematurely. If my cancer hasn’t progressed Active Surveillance is still an option at this point. I am scheduled to go back and see my oncologist in January and have a PSA test at the same time. If the PSA is not much more than my last one I would assume the cancer is not progressing rapidly. I realize the PSA is just an indicator but short of having another biopsy that is all I have to go on at this time.
I have been thinking I may just take some time away from reading, researching, and dwelling on the subject. I can’t take leave and go anywhere (negative leave balance due to so many doctors’ appointments) but I try to quit dwelling on the subject. I suspect it will be difficult as I tend to like to do research and immerse myself in any problem.
Again, thanks for the comments!!

David

dwhite1031
Posts: 26
Joined: Jul 2012

First and foremost, thank you for your service to our nation and welcome home. When you listed your family, you listed your spouse and a "wonderful" daughter. That spoke volumes to me about how you feel about your family. I'm sure you know, that they suffer thru your health issues with you each step, though maybe not physically, but emotionally and deep within their being. Since I was diagnosed this past July resulting in a Gleason 9 and an aggressive cancer that was not evident in my biposy July 2011, I have seen my wife, children, grandkids, family and friends, all experience how MY disease has touched them. Cancer of any kind is a terrible thing, and it not only eats away at your body, it eats away at your very existence and that of your family if you allow it to. You are loved, you are a part of many lives you have touched and will touch in so many ways, and some you will not be aware of. You are touching all of our lives on this board.

You mention you can't go anywhere due to negative leave balances. Have you checked about FMLA (Family Medical Leave Act)? Federal law requires that your employer allow you 12 weeks of consecutive time away from work in the event of illness, and cannot release you from employment because of it.

Remember this when the cancer begins to pull your mind and emotions down into it's darkness, we are here, we understand, and we're where you are or have been there. Lean on us man, never give up, educate yourself about all of your options, and never think that your life isn't important, because it is.

cchqnetman's picture
cchqnetman
Posts: 97
Joined: Sep 2012

Thanks for the comments. When I said I couldn't take time off I was referring to taking some time off just to get away. I am sure if I decide to get treated I will be able to take off even if I have to go in the hole (farther). Both my wife and I are considering retiring so that may not be an issue. I don't know how anyone ever decides on a treatment. I will think that one plan in the best and the next day I am not so sure and the following day I have decided against it. I go back to see the doc in Jan and have another PSA test. I guess I will see what is going on then and go from there.

Thanks again.

David

guards
Posts: 72
Joined: Aug 2010

David, If I had know the problems and perhaps had better cousuling I would not have proceeded with the treatment. I would have chosen a quality life for my remaining time.
You are about the age I was when they finally found cancer in 1 of the 12 samples on my 5th biopsy in 4 years! Many have no problems and breeze through it. Some of us will never get close to where we were. Like you I loved to ride about 15 k a year I had 4 bikes , sold them all. loved golf the clubs now gather dust in the garage. All my plans I had for my retirement went up in smoke with the problems. I will be 70 next birthday and I miss my old life. I was ok for a couple of years then my problems mushroomed. So i understand your thoughts and concerns the choice will be yours, just thought you shoud know some of us would have chosen quality of life. I am sure others have but I think they chose to avoid the internet. The big C is a terrifying thing but the more I read the more I believe QAL was a better choice.

cchqnetman's picture
cchqnetman
Posts: 97
Joined: Sep 2012

Thank you very much for you post. I really feel like I am so alone feeling the way I do. I figure it took roughtly 12 years to get from "a single focus of adenocarcinoma" to where I am today. I really don't want to make my life more miserable just to extend the miserablness.

Thanks again.

David

mrspjd
Posts: 688
Joined: Apr 2010

Crisis Hotlines/Resources/Organizations

1-800-273-TALK and 1-800-SUICIDE the National Suicide Prevention Lifeline-A 24/7 hotline for callers in the United States

1-800-799-4TTY (4889) TTY/TDD services at the National Suicide Prevention Lifeline (USA)

800-273-TALK   
A US Veterans Crisis Hotline

veteranscrisisline.net
A US Veterans Online chat and information 

cchqnetman's picture
cchqnetman
Posts: 97
Joined: Sep 2012

Thanks. Appreciate the info and concern.

David

limpndamp
Posts: 7
Joined: Oct 2012

David,

I can speak to spinal fusion, because I had the c4/5; c5/6 vertebrae fused about 3 years ago (a few months before being diagnosed with PCa). I had severe spinal stenosis. The discs were bulging into my spinal cord. The doc told me I was a fender-bender away from being paralyzed. In fact, if I did not have the fusion surgery, I probably would be paralyzed in 5 to 10 years. Although my ability to turn my head is only slightly restricted, I can honestly say that I am completely satisfied with the outcome. The loss of flexibility and no pain versus the pain prior to surgery was an easy trade-off. I would do it again without hesitation.

I, too, was recently diagnosed with chronic kidney failure. Stage IIIa. We are in a "wait-and-see" mode, trying to limit the advancement by proper diet.

My approach to all this (including PCa) is to separate each disease and treat it on it's own. My neck (and arm) are pain free; my PSA is nearly undectable; and I'm trying to eat healthier.

cchqnetman's picture
cchqnetman
Posts: 97
Joined: Sep 2012

Thank you so much for the comments on the spinal fusion!! That is what is causing me the most pain and the thing I would like to fix the most. The doc said it looked like my c3/4; c4/5; and c5/6 were worn out. I have an MRI scheduled for Nov 1 and am anxious to see what it says. I go back to the doc in Dec. He is just a pain management doc. He said he is probably going to refer me to a neurologist that can talk to me about fusing them. Not sure I want to have it done but I will listen.

I hear what you say about treating each problem separately but I tend to use a car as an analogy. I have a car that has several things wrong with it. I don’t want to fix one thing that will allow me to drive it longer if it wasn't a pleasure to drive in the first place and fixing the one thing is going to meke it less pleasureable to drive.

My kidney disease is in Stage I. They suspect is caused by years of taking Naproxen for my neck. It has kind of settled down and not getting any worse.

Thanks again for the comments. I really appreciated hearing from someone who has had the spinal fusion. Can you explain a little bit about what they did and the hospital stay/recovery time?

Thanks!!

David

cchqnetman's picture
cchqnetman
Posts: 97
Joined: Sep 2012

Thank you so much for the comments on the spinal fusion!! That is what is causing me the most pain and the thing I would like to fix the most. The doc said it looked like my c3/4; c4/5; and c5/6 were worn out. I have an MRI scheduled for Nov 1 and am anxious to see what it says. I go back to the doc in Dec. He is just a pain management doc. He said he is probably going to refer me to a neurologist that can talk to me about fusing them. Not sure I want to have it done but I will listen.

I hear what you say about treating each problem separately but I tend to use a car as an analogy. I have a car that has several things wrong with it. I don’t want to fix one thing that will allow me to drive it longer if it wasn't a pleasure to drive in the first place and fixing the one thing is going to meke it less pleasureable to drive.

My kidney disease is in Stage I. They suspect is caused by years of taking Naproxen for my neck. It has kind of settled down and not getting any worse.

Thanks again for the comments. I really appreciated hearing from someone who has had the spinal fusion. Can you explain a little bit about what they did and the hospital stay/recovery time?

Thanks!!

David

limpndamp
Posts: 7
Joined: Oct 2012

David,

For more information, do a web search on "cervical discectomy with fusion".

I only had the C4/5; C5/6 discs removed, although it was first suspected that the C3/4 would also need to be removed. My doctor, a neurosurgeon, said that the MRI sometimes makes things look worse than they actually are. He said he would make the decision about the C3/4 when he went in. In addition to an MRI, I also had a myelogram (sp?) which is a procedure where you are face down on a tilting table, a dye is injected into the lower spinal canal, and the table is tilted so your head is closer to the floor so the dye goes toward your head and xrays are made. This supposedly gives a better result than the MRI. I think my doc said he would not operate with having the myelogram results with him during surgery. This procedure was surprisingly pain free (other than the position I had to put my head during the test aggravated the bulging discs). It probably only took 15 minutes to complete as an outpatient. A numbing agent was used at the injection site. I don't remember having any side effects from this procedure. I drove myself to it, and home afterward.

As for the spinal fusion surgery, it also was relatively pain free. There is about a one to one and a half inch incision on the lower neck. The discs are removed, vertebrae bone is ground away to make room for a piece of cadaver bone to be inserted in place of the disc. A metal plate that spans the vertebrae which had the discs removed is screwed into the vertebrae. It makes for quite an interesting xray!!

My recovery couldn't be easier. I spent one nite in the hospital, and wore a neck brace for one day. Lifting was limited to something like nothing heavier than a cup of coffee for several weeks. The doc said, on a scale of one to ten (most painful), recovering from neck surgery is about a two; whereas lower back surgery is a nine. I think I was off pain meds two days after surgery.

I would recommend you find a good neurosurgeon if you are going to have the surgery. An orthopaedic surgeon could do it, but considering the proximity to the spinal cord, I wanted a neurosurgeon doing it.

As I said before, I would not hesitate to have this done again.

cchqnetman's picture
cchqnetman
Posts: 97
Joined: Sep 2012

Thanks for the info. I will definitely do the research.

Thanks again.

David

texhutch5
Posts: 4
Joined: Nov 2012

David,
I'm with you on not wanting emotional replys. I was 47 when diagnosed with all 12 biopsy needles positive with gleason 7-9s. My PSA before surgery was 34 and after my two month follow up, it shot to 188. My urologist staged it at the time T3A. I was told to start treatment or die. So I had the robotic surgery and after the two month follow up I started injections of Lupron. All I could find on the internet was the standard message found on almost all medical websites, or people wanting to give hope and cheer. I wanted to know what really happens, and what men go through with the disease and treatments. I appreciated the few men that shared their actual experiences. So far, I have survived for five and a half years since treatemens began. After consulting five different oncologist, including one at MD Aderson in Houston, they all agreed that hormone blocking was the best for me. So I have been suffering from the effects of very low testosterone for over five years. My PSA still remains undetectable, so I haven't needed chemo. The main thing that concernes me about your situation is you DJD. The hormone deprivation has caused me severe osteoporosis. So far, I have had two fractures in my heels, making it difficult to walk. My lower back is in constant discomfort. And my once muscular arms are resembling my grandma's. When your testosterone is close to castrate levels, you will start losing bone very quickly. You will also start losing muscle mass and energy, making exercise difficult.For the bones, I have taken Zometa and Alendronate, with little success. If you are experiencing depression, the hormone deprivation will probably make it worse at some point. Currently I am taking Cymbalta to combat pain and depression...it helps a little, but thats all. Things got so bad lately, that my oncologist agreed to give me a treatment holiday. I am off of the alendronate and didn't have my scheduled Eligard shot. We are going to let my testosterone rise and carefully monitor my PSA...hoping that this will improve my quality of life. It gave me a psychological boost so far, and am hoping to feel normal soon. I have done a lot of living in the past five years, and don't have regrets for treating the cancer as I did. My advice to you is to talk to your orthopedic surgeons about the impact that hormone deprivation would have, should you have to go this route. And if you are told you need hormone deprivation, try try try to talk the doctor into intermittent treatment. Which means after your PSA is brought down to undetecable with hormone treatment, then let your testoterone recover for as long as you can before getting your next treatment. If you can do this, you might be able to treat the cancer and still have a good quality of life. I hope this helps.

cchqnetman's picture
cchqnetman
Posts: 97
Joined: Sep 2012

Thanks for the advice. I will definitely keep that in mind.

Thanks again!!

David

guards
Posts: 72
Joined: Aug 2010

Don't know how I missed the spine problem but I did. Totally different problem get it fixed! Went through that pain took it all the way to a very dramatic sawyer-brown symptom as they called it. Partial parralis left side (hand and leg dragging) right side very little feeling of cold, heat or sensation. before I finally went to a neurologist , was trying to get it done with a bone cruncher. Got to the doctor that night , did an mri that evening and surgery the next AM seems I waited so long I did some spinal chord injury ( guess we have a cover like wire does aand I scraped a lot off. The pain was big time and consistant but being the tough guy I was gonna live with it. The surgery was a sucess as I got the use of my hand and arm back and could walk again. This was several years before the PC. So my advice on this one is giterdone. It gave me back the ability to golf and ride! Oh it was a c5/c6 fusion they had to remove the disc etc was in surgery for about 7 hrs Doc said it wasn't to easy had a great surgeon for this. have some lingering burning in my feet but its so minor compared to the pain I was in! good luck.

shipjim's picture
shipjim
Posts: 130
Joined: Apr 2006

Hell's Bells, we all have this stuff, backs, knees, hips and of course PC. All can be treated some easier than some. I have DJD in my low back no disc at L5-S1 now the one above is going. I don't want fusion, I do get facet joint nerve treatments (kills the nerves for 6-8 months. All those nerves do is say I hurt, I already know that!) I had the robot, If your cancer hasn't spread beyond the prostate, it's quick relatively painless and of course could have side effects.
You're young, quality of life to me is when I can't see, walk, talk or take care of my self not some incoveniences I have grandkids to play with and place to go I want to see.
Retirement may not be a good option if you have nothing else to focus on but your health. Hopefully you have a hobby, my son just died in a car wreck, it's really final and death is a life sentence for the survivors especially self inflicted.

Find a professional to talk to, good luck

ralph.townsend1's picture
ralph.townsend1
Posts: 352
Joined: Feb 2012

Shipjim

I can relate on everything you said about life sentence and death which is the final answer. We should never fear death for the pain is gone and our friend's move on. :-)

My heart is sadden for your loss of your son, I hope there is some joy in remembering him!
My prayer's are with you!

God bless

cchqnetman's picture
cchqnetman
Posts: 97
Joined: Sep 2012

Ralph,
I was intrigued by your comment "never fear death for the pain is gone and our friend's move on. :-)". I think everyone who has ever contemplated suicide has thought about the people left behnd and their pain and hurt. But their hurt and pain subsides over time. The person who is contemplating suicide's pain may never go away. I think there is dilema - do you stay alive and ease their pain or do you check out of the net and ease your own pain. Some people say suicide is selfish because it hurts other. Is not asking someone someone who is contemplating suicide to not do it simply to ease someone else's pain also selfish?

Just saying there are always more that one way to view a situation.

Cheers.

David

Samsungtech1
Posts: 350
Joined: Jan 2011

I have stage 4 metastic cancer, spread to lung and bladder at the very beginning. From my early years in heavy construction I have been diagnosed with DJD in every joint in my body. I guess when they operated on lower back, and inserted gel on two joints in 82 I have constant pain in lower back and my siatica on left side hurts everyday. I also have melanoma and am going in for further surgery on another positive mole. I have other issues, and just to add another one my wife just had a masectomy about ten days ago. We are separated.

I got through Viet Nam and threw my watch away, when I left, and figure everyday is a gift. When it gets to the point that my quality of life is dependent on others I will make a decision regarding end of life issues, but until I reach that stage I will not quit fighting. Everyday you have you should be thankful. I had plenty of friends that would gladly trade with you except they are dead. Once you are dead all other stuff does not apply. Everyone has issues. Ending them is one way, but you have to think of the others in your life. I do not believe in God, quit in Viet Nam. I do believe in the spiritualness of life. Karma is there.

Don't ever give up. That is the easy way.

Mike

ralph.townsend1's picture
ralph.townsend1
Posts: 352
Joined: Feb 2012

But not so fast, Suicide is cheating death in it's on right. I want my family, friend's and in specially my case, God to know I was not fearful to face pain and death. In my case of a person who has contemplating suicide, which I over came with the love life of my God family, and friends.

I want my family to say he was a vietnam veteran and a Veteran in life. So that shadow box of war metal's and picture's of my time serve will be on the wall at grand kids House and not in a box in the attic of that terrible war.

Your so right its easy to walk away and family, friends and who cares about God or if there is a God.

There are always more that one way to look at a situation

I choose to face death at its time, for its right.

Samsungtech1
Posts: 350
Joined: Jan 2011

Ralph,
Have contemplated it as well. Took my gun and loaded it and wasbready to do it but my daughterbstopped by. She told me I was a coward. I did not argue with her, but I feel that gun is my out when it comes. Stuff was bad, but it seems that all this cancer can not take over my lif. Have to go in for another melanoma surgery. Funny, but death almost seems like the end of a very bad memory. Does notmscare me. A watched it and decided , So what, want to do it, then do it. Everything else is just BS. I had enough stuff going on that it looked like time for me, but that was before I learned that doc's and nurses do not know what is going on, including a remission that I am now in, so grandkids get another year of presents. Go figure.

Mike

Swingshiftworker
Posts: 626
Joined: Mar 2010

Well, I don't think I'm going to die from PCa BUT I've already decided that, if it comes down to it, I'm going to seek out legal euthanasia where ever it is most convenient to arrange it.

I've watched older people in my family gradually die while ill and bed ridden. It's not pretty. My mother -- who will be 99 years old this coming Jan 5th -- is in the same situation. Frankly, I don't think human beings are meant to live that long and when they live beyond the point that they can care for themselves and truly "enjoy" life (not just exist), it really calls into question the premise that "life" MUST be preserved over all else.

If I become chronically ill and pain or bedridden and become nothing more than a burden and hunk of meat that has to be fed and cleaned like a baby, I will definitely want OUT!!

That said, I wouldn't use a gun. Guns are VERY messy. I'm a retired law enforcement officer. I own lots of guns AND I've seen the effects of them. If you commit suicide w/a gun, you won't have to see or clean up the mess but it won't be pretty. I don't want to go out that way either.

I'd prefer a peaceful sleep in a calm and loving environment in the company of the few people who care about me and who will take proper care of my remains. So, if I don't go "naturally," that's the way I'd "prefer" to go.

Samsungtech1
Posts: 350
Joined: Jan 2011

I apologize. I thought I was sending that to Ralph. Seems like it went up without my knowing. Death is a personal thing. Everyone hastheir ideas, and we keep them in the back of our mind. I hope that if it gets too bad that I will have the mind set to end it. Guns, drugs, etc. are all means. Unfortunately. Drugs do notmalways work. Can you imagine anything worse than doing drugs and waking up. Anyhow it is all a matter of what you want. Good luck to everyone. I qm now in remission, with HT shots. Never know where life will take you. Guns are messy, but pills are a question mark. To each his own. Hopefully they will come up with a cure. Wierd how it works.

Mike

cchqnetman's picture
cchqnetman
Posts: 97
Joined: Sep 2012

When I was first diagnosed with PCa I wanted to put off being treated for as long as I could and knew I was taking a risk. I have already gained 12 years of not being incontinent or impotent so I figure I won a partial victory. I made up my mind if the PCa did catch up with me I was not going to die a long drawn out death. I have seen several of my friends and relatives die and if I can do anything to keep from going that way I will. I may have to check out of the net a bit early but I will go on my terms. Having said that, guns don't have to be messy. A quiet place on a beach at low tide and by high tide no more mess. Guns have the highest success rate.

Swingshiftworker
Posts: 626
Joined: Mar 2010

Guess you've never seen the results of a suicide by gun.

I have and they are almost always very messy. Some messier than others. You can increase the possibility of a "neat" crime scene by using a 22LR bullet but that also increases the risk of a failed attempt.

Frankly, if you need to "check out", the BEST method is currently to sign up with an established euthanasia organization in Europe (I posted the links to them above) who will arrange for the administration of a cocktail of totally drugs under the direction of a doctor that are guaranteed to cause you to fall asleep painlessly w/o any possibility of waking back up.

That'll be my choice if it ever comes down to that.

SeattleJ
Posts: 32
Joined: Mar 2011

Washington and Oregon also have "Death with Dignity" laws that allow assisted suicide. I believe that you must have a terminal illness in both states and have it certified by physicians, but is another option for those in that situation.

These are tough personal choices that hopefully we won't have to make, but having the option can bring peace even if it is not used. That has happened several times since the WA law passed. A person is certified but never carries it out. It just gives them peace that they can make the decision if they wish. Control over your own life is important too.

John

ralph.townsend1's picture
ralph.townsend1
Posts: 352
Joined: Feb 2012

That great, 12 years! Do not take anything i say personal. I'm almost 62 and to many drugs. I totally understand your thinking.

Have a great Christmas and a Happy New Year.

Alexandra's picture
Alexandra
Posts: 1209
Joined: Jul 2012

I have been thinking about the subject for 8 months since I was diagnosed with advanced ovarian cancer.

I am not religious and I support the right to end terminally ill person's life by suicide or euthanasia when there is no hope and quality of life is unacceptable.

I am neither depressed nor suicidal and I don't need referrals to suicide hotlines or bible references.

I will fight the disease for as long as it makes sense to me.

I don't want the mess or emotional trauma to the loved ones.

I live in Canada where help with euthanasia is a criminal offence punishable by up to 14 years in jail. We also have much stricter gun laws than in USA.

The best ideas I found came from http://ash2.wikkii.com/wiki/Main_Page and boil down to the over-the-counter drug cocktails with anti-nausea drugs or inert (welding) gases.

 

Happy and healthy New Year to you all

cchqnetman's picture
cchqnetman
Posts: 97
Joined: Sep 2012

Alexandra,

I loved you comment "I am not religious and I support the right to end terminally ill person's life by suicide or euthanasia when there is no hope and quality of life is unacceptable." I couldn't have said it better. I kind of agree with your statement, "I am neither depressed nor suicidal and I don't need referrals to suicide hotlines or bible references.” I have always been depressed for as long as I can remember but I don't think I am suicidal. I will be when my life gets to a point that it is totally not worth living. I am not terribly concerned with legality - are they going to arrest me if I commit suicide. Good luck. I am not a gun fanatic but I have a 9mm Berretta and a couple 12 gauge shotguns. If I continue on with Active Surveillance I will do it until it is painful. At that point I will probably check out of the net.

I hope you have a good life for as long as you want to it last.

Happy New Year and best wishes in all your choices.

David

hopeful and opt...
Posts: 1293
Joined: Apr 2009

I do not understand the logic of part of your post, since Active Surveillance is short for " Active Surveillance with delayed treatment, if necessary".

Your new diagnostic test indicated that you now require Active Treatment, so if you continue with what you interpret as Active Surveillance, you are not getting the treatment that you require, and there would be consequences based on this action.

So instead of getting the treatment that you currently need, and go on with your life,  you instead would rather be non compliant and "will do it until it is painful. At that point I will probably check out of the net."

 

cchqnetman's picture
cchqnetman
Posts: 97
Joined: Sep 2012

Hopeful,

There are many "standards" for Active Surveillance as there are for so many things in PCa world. My goal is to delay treatment as long as I can and right now I am not convinced I have to have treatment. I may at some time decide I have to and would probably chose brachytherapy. I should have said I will do AS until I have to have treatment. My definition of "have to" may be different from someone else's definition of "have to". If I ever get to the point where it is painful I will probably check out of the net. I am not going to lessen an already less than optimal quality of life just to extend it.

Wishing you all the best in your treatment selections.

Happy New Year!!!

David

ralph.townsend1's picture
ralph.townsend1
Posts: 352
Joined: Feb 2012

David, I feel so lost in my world and should tell you that I try not to think like you, but I'm fighting the same battles you have. As a Vietnam veteran I should have died there. I have been sick since the the 1970 and did not know how to deal with it and fighting the demon's. I was a great little child and the War took that away, I try to be a better person, but sometimes the darkiness take over.

Happy New Years

cchqnetman's picture
cchqnetman
Posts: 97
Joined: Sep 2012

Ralph,

I think your darkness is my 50 pound weight.  Sometimes I feel like there is a 50 pound weight sitting on my chest.  Not heart problems, just the way my depression feels.  I guess everyone has their own description but no one has a cure.  I am not going to take drugs or become an alcoholic so I just deal with it the best I can.  Still haven't decided what to do about the PCa.  I talk to my doc next week and a radiation oncologist the week after.  Docs don't usually have good news.  I don't have any symptoms yet and it is still T1C so I am pretty much sure I am going to stay on AS for a while.  I can't make up my mind on a treatment plan so I guess doing nothing is better than doing something and having it be the wrong choice.

Hope everyone's 2013 is a better year.

David

 

califvader's picture
califvader
Posts: 108
Joined: Aug 2010

 cure what you can and endure what you can't.  that's how i feel.

halfwayhome
Posts: 9
Joined: Jan 2012

This is an objective term. What brings you joy? Family? Friends? If you don't have this what about volunteering for something you feel strongly about? Find the joy in your life. This won't make all your problems go away but it will make you feel better for whatever time you have or choose to have left. Some will say this is silly. I challenge them to help a fellow pc patient that doesn't have a ride get to a doctors appointment. Tutor a struggling student that has never known his dad. Find the things that bring you joy. Helping where and when you can will bring joy and meaning to your life while your still here. To big to tackle? Try doing RAK for the rest of of the time your here. Random acts of kindness. Hold a door for somebody. Make somebody who is down smile or laugh with a joke or by being goofy. Try it with a complete stranger.
I hope this post will help in some small way. I know it's helped me to try and encourage someone else.and yes I am a fellow Pc patient.

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