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I Looked at Death Today

Trew
Posts: 892
Joined: Jan 2010

I stopped by to visit with a man, 71, who is in end stage prostate cancer. He is now under hospice care. The cancer is now into his bones and he hurts all over. What we are dealing with is serious stuff. If kills, but we all know that. I think if I see someone say, "oh, its only prostate cancer" one more time.... But everyone here knows what we are dealing with. And no matter what treatment we take, we are never the same afterwards. Prostate cancer changes men's lives.

Here is hoping for a better cure for the other men in our lives!

PS: I hate hormone shots!

142
Posts: 169
Joined: Dec 2009

Bravo ragazzo. I tried to visit a good friend who was dying of esophageal cancer as much as I could (350 miles away). They said he didn't know he had visitors, and would not know I had been there, but one of the last visits he opened his eyes and talked to me. Made me feel really small to not get there any more often. He passed only weeks before I was diagnosed with PCa.

I think it was in the Korda book that I saw a proper discussion of the fact that surviving any cancer is nothing short of war. Stop fighting, we lose.

The TV is full of the 3-day Komen race (breast cancer)these days. I don't begrudge the ladies even a step, but I hope someday there will be an equivalent for us.

dakotarunner's picture
dakotarunner
Posts: 96
Joined: Feb 2004

On the comment for the prostate equivalent to the Komen race, I say there can be. It simply needs to start small,and grow from there--- kinda like a cancerous cell in a prostate gland.

I am going to start a separate thread and see what happens. Worst it can do is fall flat.

Best to all. Fight on!

gumbyrun's picture
gumbyrun
Posts: 52
Joined: Dec 2009

There is an organization that was started in Australia that is dedicated to raising awareness of men's health issues, specifically PC and testicular cancer. There big annual fundraiser is for guys to grow a "Mo" (slang for mustache in Australia) in the month of November and get sponsors. Then at the end of the month they have a big party, prizes, etc. There have been participants in the US but ironically I sponsored a guy in Australia and then was diagnosed later that month.
Here is the website:
www.movember.com

You can bet I will be forming a team next November. Also, I wanted to get a tattoo after my surgery. There is no color ribbon for PC (that I'm aware of) so I got permission from the Movember people to get there logo on my tricep. My teenage daughter gave me a "tat" with a Sharpie of the logo and it looks pretty cool...now I hope people will ask me about it. I have also included a jpg of a mustache and link to Movember.com in my work email signature. The word needs to get out there!

Trew
Posts: 892
Joined: Jan 2010

I was on a small team that raised a $1,000 for Movember this year. Great fun. I plan to be increasing my annual contribution to cancer research this year.

hopeful and opt...
Posts: 1310
Joined: Apr 2009

distributes blue wristbands and ribbons.........I'm pretty sure that this is the color for prostate cancer

Ira

marc1957
Posts: 79
Joined: Oct 2009

Dont be misled by statements that they wouldnt know.

When I was in the hospital with lung cancer, I had a blood pressure of 000/000 for awhile due to (sp?) vagas nerve stimulation, ended up in ICU with a lare team working on me. I could hear & comprehend what was going on for sometime before I could see and/or interact with people.

Its a good thing that you made the effort in my book.

regards

-marc

1998 - lung cancer survivor
2009 - prostate cancer survivor

Trew
Posts: 892
Joined: Jan 2010

Looking at the number of posts and responses after breast cancer and comparing those numbers with the posts after PC it appears men are not so into talking about PC. I can understand that. What man really wants another man to know he is having certain kinds of problems that may, how do I say this, that may make him appear less of a man?

I know breast cancer is hard on a woman, but she can still have sex after BC. PC can and often does hit a man were he is particularily sensitive: his manhood. Is that possible? Did I word that correctly?

But as many men die of PC as women die of BC. And often after PC men have continency problems women don't have. My point is this: in the living and dying, PC is a hard cancer on men and the women who love them and it should be treated more seriously than it is.

txbarton's picture
txbarton
Posts: 82
Joined: Aug 2009

Trew,

As many men are are diagnosed with PC as women diagnosed with breast cancer but the death rate is much higher for breast cancer (est. 28,000 v. 41,000) for 2009.

Who is to say which is worse; losing your erection or losing your breast. Both can be concelaed from public scrutiny but I have no issue being naked in front of my wife, I doubt the reverse would be true if my wife lost a breast.

I do agree that PC is not regarded as seriously as breast cancer and it should be recognized.

VB

txbarton's picture
txbarton
Posts: 82
Joined: Aug 2009

Trew,

As many men are are diagnosed with PC as women diagnosed with breast cancer but the death rate is much higher for breast cancer (est. 28,000 v. 41,000) for 2009.

Who is to say which is worse; losing your erection or losing your breast. Both can be concelaed from public scrutiny but I have no issue being naked in front of my wife, I doubt the reverse would be true if my wife lost a breast.

I do agree that PC is not regarded as seriously as breast cancer and it should be recognized.

VB

JR1949
Posts: 230
Joined: Jun 2009

I agree prostate cancer should be taken more seriously. I am sure that breast cancer that results in masectomy has got to be devastating for a woman...makes them feel they are less of a woman. I was 60 when I had radical prostatectomy March 2009 and to date I am still having contincency problems, wearing a diaper and pads, and I am unable to get an erection and have sex and I feel like less of a man. Yes I am glad to be alive, but I feel I have been cheated out of 10 to 15 years of sexual relations and continency. My wife is understanding and supportive, she told me that we've been married 35 years and had a good sex life in that time so it's not a problem.(God bless her)

Trew
Posts: 892
Joined: Jan 2010

That is my experience, and I think many more men are going through the same thing, its just not easily discussed. I am still on the hormone shots so sometimes when I think of all this I start crying, too, which is a new characteristic for my wife to see in her husband.

And thank God for a good understanding wife. 40 years married this month.

bdhilton
Posts: 758
Joined: Jan 2010

Long story but went to a neighbor’s house (not friends) last night with the wife and the hostess says” you can’t have cancer…you look to healthy”…Several guys at this informal get together tell me (50-65 age group without PC) tell me that PC is no big thing every guys gets it and does not dies from it…..”Why are you having surgery…” This did make me simile to myself how ill-informed folks are…

Of course by the time I left I did put the fear of god in them and every guy is making an appointment today with a urologist via their wives…Yes, PC is cancer that no guy likes to talk about and we need to do what they have done with Breast Cancer on the awareness and fund raising…

142
Posts: 169
Joined: Dec 2009

My first comment was meant to encourage all of us to take the time to visit the friends and relatives who are in so much worse shape than we are, as Trew did. It is hard on us, but for them it is a whole different thing - that hour of company may be all they get this week.

bd - I've gotten the same reaction - people expect me to have lost 100 pounds and most of my hair after surgery, and can't understand why I haven't, so I must be kidding, right? I try to explain that I wasn't visibly "sick" - that wasn't how I found out. Waiting for that stage is not a good plan. I've had a few folks make that next-day run for the PSA test myself.

Trew
Posts: 892
Joined: Jan 2010

It is interesting how many cancer patients look healthy until they are in end stage condition. My chart has me as a T-4. I hope that has changed since I finished radiation, but I look pretty good. A friend I last saw back in October before I went out to LLU in CA for treatment looked pretty good when I left him. I get back and he is end stage liver and colon cancer and only half of his former weight and I would not have recognized him except I was given a warning before seeing him in the hospital. But looking at him in October I wouldhave never guessed. What sent him to the doctor's was pain in the abdomen. Once the pain started the cancer had already gone too far for effective treatment.

With most cancers you don't feel or see them until it is too late.

My internist felt my prostate a few times and it "felt normal for a man my age" to him. But my main turmor was on the side away from his probing finger.

Folk get a good look at end stage PC and a lot of men would be more pro active in getting their PSA levels checked.

bdhilton
Posts: 758
Joined: Jan 2010

seen cancer and the effect of several loved ones in recent years...compassion is a good attribute and recognizing folks prior to their “hour” of need…

I know I was lucky/blessed with my internist when she felt my prostate and I had a nodule on my right side (nothing on the left)because my PSA was 2.82 and my internist would not have passed me on to urologist unless I was pushing 4 or above…pre surgery T2b 9/15 positive for cancer (one core 100% the other 8 are 2-3%) 4+3=7 on right lower and right mid….nothing on the left …Best to you

Trew
Posts: 892
Joined: Jan 2010

I continue to visit the man dying of PC every day but his end is very near. He is under Hospice care and he gets little to no food or water now. I just sit by his bed and watch for awhile, have prayer for him, gentle tak to him, the leave. Mondy we have a pretty good discussion for 5- 10 minutes but yesterday he was pretty non-responsive. I will be in to see him today before noon.

We are dealing with a very serious cancer.

142
Posts: 169
Joined: Dec 2009

Tell him we are keeping him in our thoughts and prayers each day.

Trew
Posts: 892
Joined: Jan 2010

142, I told Don about this site and you comment, that men he doesn't even know wish him the best.

I spent a nice half hour with him. 3 times I indicated I should leave, he was in and out and I didn't want to tax his energy levels, but 3 times he indicated I should stay. He wanted to hold a hand tonight. He couldn't say little, but I talked of the school we both attended thought ten years apart. He had a number of soft smiles between hard swallows.

This is a tough visit on eligard- my emotional base is so messed up right now, but I found it comforting being with him.

PCa is serious stuff.

I will be back over to see him tomorrow. I expect he will be gone by Monday. Just my guess from what I have seen before.

Trew
Posts: 892
Joined: Jan 2010

Don is still with us. I stopped by today but he was out from pain meds. And he is having a lot of sleep apnea- up to 47 sec long at times. I thought he had died while I was looking at him, but he took another breath and then went on. He is very close to the end.

Very serious stuff this prostate cancer.

Very serious.

DJ7
Posts: 4
Joined: Feb 2010

I was diagnosed 1/27/2010 Gleason 6 in 3 samples one 60% dicontinuously.
So having open surgery 3/12. Going to Hopkins, Dr. Partin is doing the surgery and he recommends open over DaVinci as he said if it were me I would have the open surgery.
Getting back to your statement about "its just prostate cancer" drives me crazy.
I don't have a death wish and am staying positive and I do want to live but the lack of knowledge regarding PCa is mind boggling. My wife is even in denial.
So I read excessively, talk to a few guys even on the phone and deal with this alone.
Do I want sympathy, no but I am having more than a tooth pulled.

Trew
Posts: 892
Joined: Jan 2010

DJ7, I just finished radiation on Jan 15. the doctor assigned to my case told be one of the big drawbacks of the deVinci surgery is that it is difficult to get many lymph node samples. The open surgery will give the doctor a pretty good look, access to over a hundred lymph nodes so he should get a very good sampling from you.

And welcome to the fellowship. I am sorry to hear you will have to go through this process. And sympathy is ok. You are having more than a tooth pulled- you are going to have serious surgery.

DJ7
Posts: 4
Joined: Feb 2010

Trew,
Thanks for your kind words.
That is the reason I think Partin if pro open surgery.
I sure want the lymph nodes checked.
DJ

Trew
Posts: 892
Joined: Jan 2010

And what every doctor believes is that his method of treating PC is the best one. But if you have picked a good doctor, then you should get one of the best jobs out there.

Again, welcome to the fellowship.

erisian's picture
erisian
Posts: 109
Joined: Dec 2008

Not only does every doctor think his treatment is the best kind, but every case is different. Your cancer is no more identical to anyone else's than your fingerprints are to anyone else's. Do all the research that you can stand. And do look at nutritional info! My cancer center has a library. I usually have a couple of their books. That library has proven to be an excellent source of RELIABLE information.

If you can find one like that, use it.
Welcome to the club that nobody wanted to join!
You have already taken a good big step in the right direction by joining a forum. There are a lot of men who have prostate cancer, but only a small percentage of them are using these types of tools, or support groups, for that matter. But what is important for advancing knowledge through communication is not the number of people with prostate cancer, but the number of connections that exist between those people.

The breast cancer women are beating the crap out of us in that department, too!
We need to get organized the way they are. There IS strength in numbers!

Welcome also to the fight of your life. Good Luck brother!

Trew
Posts: 892
Joined: Jan 2010

Don is slipping away. I was in today to see im at the hospice center. Don was sleeping, but I got to meet with some of his fmily. This is hard: he has a 90 year old mother and Don is her only child. And at her age she is watching her only son dying.

I do know how to pray. I had prayer with the family, then alone with Don. Even if he can't hear me, he is still a person.

PC is a hard death.

And his wife told me Sunday, 2/14, is their anniversay. Said she: I hope he doesn't die on the 14th. I can understand that.

The 14th is also my anniversay. I would not want to share that date with death, either.

142
Posts: 169
Joined: Dec 2009

I understand his mother's thoughts - my grandmother outlived my dad, and my mom has spent the last months in the same fear as I find myself in the PC world.
My best wishes to all of Don and family, and to you for being there to give them support.

Trew
Posts: 892
Joined: Jan 2010

The battle Don was fighting ended this morning at 6: 15 ET. I just got a call from his wife. The pain is over. Sleep has come. He did not die on 2/14 as she feared.

This is the real side of PC, what we are all fighting to avoid.

I guess this is the end of this thread.

The fellowship continues with us.

PC is serious stuff.

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

Don't think of it as an end to this thread. Yes PC is serious and many are fighting the battle. The threads will live on and provide hope and comfort to others even when facing death as we all must at some point. Please give my regards to Don's wife and family.

Larry

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

I read this entire thread and was crying before the end....and I'm not on hormones. I feel so sorry for the family and especially his spouse. Yes this is a very serious illness especially when you do the math. Probably everyone here has seen this but:

Detailed Guide: Prostate Cancer
What Are the Key Statistics About Prostate Cancer?

Other than skin cancer, prostate cancer is the most common cancer in American men. The latest American Cancer Society estimates for prostate cancer in the United States are for 2009:

about 192, 280 new cases of prostate cancer will be diagnosed
27,360 men will die of prostate cancer

About 1 man in 6 will be diagnosed with prostate cancer during his lifetime. More than 2 million men in the United States who have been diagnosed with prostate cancer at some point are still alive today.

Prostate cancer is the second leading cause of cancer death in American men, behind only lung cancer. About 1 man in 35 will die of prostate cancer. Prostate cancer accounts for about 10% of cancer-related deaths in men.

The 5-year survival rate refers to the percentage of patients who live at least 5 years after their cancer is diagnosed. These rates are used to create a standard way of discussing prognosis (outlook). Of course, many of these patients live much longer than 5 years after diagnosis. Five-year survival rates are based on patients diagnosed and first treated more than 5 years ago. Improvements in treatment since then may result in a better outlook for recently diagnosed patients. Five-year relative survival rates compare the observed survival with that expected for people without the cancer. That means that relative survival only talks about deaths from the cancer in question. This is a more accurate way to describe the outlook for patients with a certain cancer.

According to the most recent data, for all men with prostate cancer, the relative 5-year survival rate is nearly100% and the relative 10-year survival rate is 91%. The 15-year relative survival rate is 76%. Keep in mind that 5-year survival rates are based on patients diagnosed and first treated more than 5 years ago, and 10-year survival rates are based on patients diagnosed more than 10 years ago. Modern methods of detection and treatment mean that many prostate cancers are now found earlier and can be treated more effectively. If you are diagnosed this year, your outlook is likely to be better than the numbers reported above.

So, if you do the math...there are 525,600 minutes in every year...divided by # of deaths for 2009 = 27,360 Which means every 19.2 minutes a man dies from prostate cancer.

On the positive side the 15 year survival rate of 76% is from patients diagnosed over 10 years ago...much better treatment is in our group. Also many of us caught it soon enough and hopefully without Pca shortening any of our lives.

God Bless us all and our fight against this cancer!

Randy

Trew
Posts: 892
Joined: Jan 2010

Very well done, heart-felt expressions noted. I will pass on the sympathy of tis group to the family. We are all together in this. Yes, many will survive, but we do not survivie whole, and many do die. that must never be forgotten. PC is not just a slow cancer men get.

142
Posts: 169
Joined: Dec 2009

My sincere condolences to his family, and thanks to you for helping them by being there.

Trew
Posts: 892
Joined: Jan 2010

Don's funeral is today.

I have been asked ot have a part in the funeral and I plan to mention the fight against PC begins with a simple blood test.

Don was an active boater, outdoors type person with a sanguine personality. He is now at rest.

The fight goes on.

He has a son who has a PhD and works for a BIG pharmasucial (sp!) company. Their work is long, time consuming and expensive. Go big Drug Companies- beat this thing!

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