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An Odd Question To Ask, or pehaps more common then I realize

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Posted 12/12/2008 9:07 PM (GMT 0)
Please don't let this question offend or upset anyone.  Like everyone else dealing with PC, I have my ups and downs, good days and bad, and go through every strand of emotions possible.  I need to know either a personal or professional opinion about survival.  And I realize, that everybody's case and body is different, and  that there aren't any guarntees.

Does anyone every really survive PC, or will it comeback at some time in your life regardless of stats and treatments?  For example, I am 56, and you can see from my stats that it appears to be organ confined, etc.  Is it is even possible that I could live to be 90 and never have the PC come back, or is it more like it's just a question of time, i.e. 5 years, 10 years, 15 years?  Are there examples of people that had PC that lived a long, long time after treatment?

Going through a panicy feeling today, no particular reason, just scared a bit.

Thanks,

David in SC

Posted 12/12/2008 9:29 PM (GMT 0)
Purgatory, I think the answer to your question ranges from yes, no, maybe, to knowboby knows. Try this link as one thought.

http://www.prostateinfo.com/patients/rising-psa/

Here is another.  Keep in mind that most men diagnosed with PC are older than you and me.

http://www.webmd.com/prostate-cancer/guide/prostate-cancer-recurrence

Posted 12/12/2008 9:34 PM (GMT 0)
Good question David...and you have a right to feel scared at times. I don't know the answer, however on another website there are lots of folks with 10 to 15 years under their belt and still going strong. The hard part about your question is the fact that it has only been the last 10 years or so that diagnosis has increased to the point where it is now and that younger men are being diagnosed more than ever before. Just 10 years ago it was usually those over 65 that were diagnosed and when they were....it was at a much more advanced stage. Plus survival 15 years after 65 wasn't that great whether you had cancer or not. Such things as heart disease or lung disease was more of a problem for men than PCa.

The advantage is that nowadays PCa is caught early on and therefore prognosis and survival is getting better all the time. This suggests that most likely you will live a long life with great odds of being cured. Hopefully you will be one of the ones that will come on here 30 years from now and validate that statement. I am willing to bet that you will be...I know I intend to be one of those that will. And I certainly believe that medical science is getting better and better all the time with treatments, that even if it does come back it can be dealt with easily enough.
Posted 12/12/2008 9:40 PM (GMT 0)
Thanks Selmer, that was quite an encouraging story. I know there are so many variables, but it was nice to hear of your example. Coxjab - thanks for the link, hadn't read that one before. I apologize for any appearent weakness of spirit. Just one of those days.

David
Posted 12/12/2008 9:44 PM (GMT 0)
Les, good words from you as usual. My dr. did say I was one of his youngest patients for PC, and he feels confident that despite the stats, that it was caught early, and that I was a very compliant patient from the start.

David
Posted 12/12/2008 9:56 PM (GMT 0)
Purgatory, I added another link to my original post. I don't know if you read both. I experienced swings in my emotions early on. Especially when I had the Cath. I didn't feel like getting out of the house because of it. I've followed your posts and know you get yours out Monday. I think your mode will change for the better. Don't get discouraged. As you begin to get back to a normal routine, you'll have less idle time on you hands to think about your mortality. Good luck Monday. That will be a big step. Ask your doctor for his / her opinion about recurrance in your specific case.
Posted 12/12/2008 10:28 PM (GMT 0)
Cox,
I am sure what you say is probably true. It's been a trying 28 days since surgery. The cath is a big bummer to have it in for so long, won't deny that. My appt. is 0945 Monday morning, and that will be 32 days exactly with it. While I feel I am still vulnerable to harm, I also feel I am healing well from the surgery. Sometimes I second guess having the surgery as to have rad., but mostly just wish this never happened, the PC, in the first place, but I am sure we all feel that way.

David
Posted 12/12/2008 10:53 PM (GMT 0)

Hi David,

Hope your mood is lifting somewhat. I have a friend who told me the story of her father who was diagnosed at age 70. He underwent radiation treatment. That was 28 years ago and he is still going strong and lives on his own.

The nurse at my doctor's office told me this week that her father was dignosed 15 years ago and is now age 70 and doing well. She did not indicate his treatment type.

A work associate has just completed five years with "non detectable" PSA after robotoic surgery. His urologist has said that he is effectively "cured" at age 66.

I seem to be meeting more people who have had this disease now that I am a patient myself or so it seems. Perhaps it is just that my awareness has been raised.

I think we all have some down days if we begin to dwell on our problems. I know, hard not to do so. Things will get better.

Best of the season to you.

Don

Posted 12/12/2008 11:45 PM (GMT 0)
I have a brother-in-law that had RRP now 17 years ago. He is nearing 80. There is a man in my church that just celebrated his 65th wedding anniversary (he is 86) and he had RRP 16 to 29 years ago. I also know two other men personally who both had surgery 17 and 18 years ago - all of these are still very well alive and old men. One of the latter group had it return in 2 years but had salvage radiation and since then he has had no return. So the answer to your question is that many men are truly cured. I hope and pray that it will be true of many more of us here, and I fully expect it.
Posted 12/13/2008 12:12 AM (GMT 0)
Thank you one and all, these were really encouraging replies, which I am most thankful for. I guess part of my problem is that I don't have any relatives, friends, or even business acquantinences that have ever had PC, so outside of this fine group, I don't have any contact with brethren of the PC curse.

Even though I have never met or seen any of you thus far, I feel a closeness or kinship, which I really need and so happy to be a part of. This ordeal would be way to scary if I really felt like I was the only one. I know some of you have it way worse then me, and for that, I feel guilty for being scared or uncertain sometime. I am one of those people who's feelings are right on the surface, I always know how I think or feel, and usually don't have any problems communicating it. Thanks again. Good answers as always.

David
Posted 12/13/2008 12:33 AM (GMT 0)

Hi David

I was intrigued by your letter about PC and age.  I have Pc and have had it for about 14 years and i am three months shy of 90.  You mention the CURSE of PC but it is just one of the things that happens along the way.  I had the seed implant about 15 years ago and about 12 years ago i could not pee.  It was not the cancer coming back but i suppose one of the side effects.  Some poor choices by me and some worse choices by different uros i am still wearing pads each day.  We get things we would rather not have and we have the choice to live with it and like it or be *****y about it.  I love every day as it come and i live it to the fullest.  I have a lot of friends and none of the have PC but they have all kinds of other stuff.  I have a number of outside interests such as woodturning which i do twice a week with a friend and i enjoy it.  We all have to make the best of what we have and be happy about it..Live each day as it comes

Jerryv

Posted 12/13/2008 1:12 AM (GMT 0)
Well said Jerryv.   wink
Posted 12/13/2008 1:28 AM (GMT 0)
Can't argue with what you said, Jerry. Sorry.
Posted 12/13/2008 1:58 AM (GMT 0)
Hi Dave, I read somewhere in all this exhausting research, that after surgery you have an 87% chance of living at LEAST 10 more years. I guess those are pretty good odds considering that the chances of heart disease, another form of cancer, getting hit by a bus or shot by a jealous husband would give you less of a chance. I like my odds with the surgery and none of the others.

Sorry for the levity but maybe a little more laughter is what we all need.

Good luck next week,

Bob
Posted 12/13/2008 2:17 AM (GMT 0)
Dave,

You know, we each have our own fears. Mine, at least lately, was surviving (or not) the surgery. That's why I wrote about it, to help someone else who might be feeling the same way. But now that you mention it, I've felt the same way you do a few weeks back, shortly after hearing the diagnosis. I'm fortunate enough to know a few people outside this board who've had the experience and have been willing to talk about it. But people here are great also, as you know; you are one of them.
Posted 12/13/2008 12:38 PM (GMT 0)
Purgatory, your post touched me...I am the wife of a PC patient. While he is not worried in the least, I have spent a good chunk of the last 8 months worrying about the next PSA test (he had surgery in March 2008 at age 57) and what it will tell us. So far, my worries have been unfounded as his PSA went down to zero and has stayed there. Between incontinence and ED issues, I feel like I cannot put this behind me ... every time he runs to the bathroom, I am reminded of the reason. Then I remember all the men that we have met (whether in person or through the Internet) who are living with this disease, and how the overwhelming majority are doing just fine.

Cancer is a very scary word. We have been conditioned to react negatively to the word and we have all heard or personally experienced a negative outcome. However, as scary as the disease is, it is not the only disease that can claim our lives. Too many doctors (including my own ob/gyn) have said to me "there are worse things than having prostate cancer." My initial reaction is almost always "easy for you to say" but they do have a point if you look at the statistics. None of us knows what is ahead but I do believe (at least today) that PCa is a beatable cancer and that my husband's surgery was the right choice for us. From the beginning, my husband said "I want it out of me" and often says "I HAD prostate cancer."

I feel for you and for all guys who are living with this. I also feel for those who love and care about them. I think that the reality offers a much, much better picture than what we have come to expect when we hear the words "you have prostate cancer."

Peace...and enjoy the holidays.
Posted 12/13/2008 1:24 PM (GMT 0)
Sephie,

Thank you for your post, yours touched me as well. I sat down with my wife of 34 years last night, to give her a chance to share and express her feelings, opinions, and even fears about where we are at right this very minute. I think it did a world of good to unload her feelings, instead of me just worrying about me. We have been married for so long, she was barely 18 and I just turned 21, that we can feel each other's hurts without saying a word. I think others here will understand that.

As a nurse, she knows how to be tough on the outside, but I am not so easily fooled by her inside feelings, the ones her normal patients never get to see, so I try to be as sensitive as I can towards them for her well being.

This has been a good thread, I think, and it has helped me pull out of a funk I was in, I can only hope that perhaps it helped others as well.

Thanks for listening,

David in SC
Posted 12/13/2008 3:23 PM (GMT 0)
David.

It is OK to have good and bad days. I find crying in the shower helps sometimes and because my wife can't hear me. YOu ae one tough guy with the cath in as long as you have. My 10 days seemed like and eternity. Who knows what the future will hold for each of us so we need to be prepared for whatever happens. We all need to to try and make the best of what we have left of it. Take care and lets go to the Beacon in Spartanburg sometime for lunch. I know neither of us need to be eating there but I am sure we would enjoy it.

Mika
Posted 12/13/2008 7:54 PM (GMT 0)
Mika, sounds like a good suggestion, so you must live in western SC too? Right now, what I eat, when I do have an appitite, is the least of my worries. While shopping in Wal-Mart today with my wife, my leg bag tube came apart and I peed all down my pants legs. thank goodness for baggy black pants, first accident i've had. had to get to the mens room, wait my turn for a stall, and soon had it fixed. Less then 48 hours to go to get rid of that miserable contraption! I am ready to move on to the next phase of my recovery. Never been to the Beacon, though I know of it and its reputation.

David
Posted 12/13/2008 9:37 PM (GMT 0)
Two good references below, both from New England Journal of Medicine.

1) http://content.nejm.org/cgi/content/short/352/19/1977 -- Radical Prostatectomy versus Watchful Waiting in Early Prostate Cancer (2005)

2) http://content.nejm.org/cgi/content/short/358/12/1250 -- Quality of Life and Satisfaction with Outcome among Prostate-Cancer Survivors (2008)

Posted 12/29/2008 10:41 PM (GMT 0)

David,I went through the worry part of this cancer and still do at times. The thing that works for me is the fact that this cancer is getting the attention it deserves and that there are some very good things happening for all of us. Tratments are getting better and men like you I and others are living longer with this cancer. This site has given me a lot of information about people who are surviving longer and able to live out there lives. That's good to hear. When I hear some tell of someon else who is surviving, I feel better. This disease, even at an advanced stage is treatable. As far as I'm concerned the medicine chest is full of therapies for all of us. Picking the right Urologist is the key to getting to the medicine chest.

Keep the faith, I am.

Posted 12/29/2008 11:34 PM (GMT 0)

David, As a spouse, this is only the second time I've posted on this site, but I read it a lot and am certainly familiar with you and everyone else who posted a response to your question.  I feel like I know you all.  I think your question is right on the mark, at least in my experience.  Survival is something that I worry about every single day, particularly with a gleason 9.  I want to grow old with my husband, plan a future, retire, travel, enjoy grandchildren, and now everything is in turmoil because we simply just don't know where this thing is going, and the statistics aren't so great for us.  I feel sometimes like we're playing with dynamite, so I don't look at statistics any more.  They're all over the board anyway and drive me crazy.  As members of this site advised me before, the worrying does ease with time, but never goes away.   My husband's internist told him he didn't think this was a death sentence.  I'm holding onto that, and any other positives.  Since the statistics aren't great, I ignore them.  My husband and I were talking today, however, and even in spite of everything that has happened since last summer, we both agree -- we've had a pretty good year, considering what might have been.  Hang in there -- you certainly have a right to be down after living for 32 days with a catheter.  I hope your appointment on Monday goes well and you and every member has a very happy, healthy and safe New Year.

Husband/58

Diagnosed Gleason 8, July 2008. Tumor left side only.

open RRP, Johns Hopkins, September 2008.  One nerve spared on right side.  Home the next day.  Back to work in 3 weeks.  Exercising after 5 weeks. 

Pathology:  Nodes, vesicles clear.  Upgraded to Gleason 9.  Negative margins.  Some extraprostatic extension. No further treatment for now. 

First PSA .1 -- after 5 weeks.  Dr. says this is undetectable based on the assay used, but I wish it was zero or "less than."  Whatever.  We will look at the trends, just like everyone else.  Next PSA will be early March. 

Dry from the day cathether was removed on day 9.  No problems at all except if he drinks coffee.  ED is an issue, but we are starting to see some slow and rather inconsistent progress with meds.  Surgeon says based on progress to date, he is "confident" that after a year, he will have full function restored.  I really love that word "confident" --- it's the first time he's used it in connection with our case, that's for sure.  Amazing how one hangs onto a hopeful word or two.

Posted 12/29/2008 11:55 PM (GMT 0)
Amazing how one hangs onto a hopeful word or two.

I agree. It is amazing how all of us can hang onto a few simple words.

Keep the faith

Posted 12/30/2008 12:31 AM (GMT 0)

David--Based on your pathology statistics, you have an excellent prognosis!  "Organ-Confined"  has the best odds for long-term survival. 

Posted 12/30/2008 12:56 AM (GMT 0)
David,

By looking at your stats it is reasonable to say, the size of your prostate may be a God send, lending to what appears to be very promising pathology report. Here's to hoping these things add up to be to be one of 2008"s luckiest ducks. A smaller prostate would not have faired up as well......Cheers! :>)

Swim
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