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Long Term survivor discussion?

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Long Term survivor discussion?  
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Posted 12/16/2006 9:46 PM (GMT -7)
Anyone in this forum, who has survived and be officially declared cured, interested in sharing their experiences and thoughts as a long term survivor? I had my prostate removed 11 years ago at the age of 49. Do this day I'm still dealing with the emotional scarring from the cancer.
Posted 12/16/2006 10:55 PM (GMT -7)

Well, I have survived for only 9 days but I would really like to hear your experience and that of others too.  I hope to have 11 years some day.  Your survival gives me great hope........

Hope to see you here.

Jim

Age 72. Diagnosed on 11/03/06. PSA 7.05. Gleason 3+3 on both sides.
Clinical stage: T2B.
RRP on 12/7/06. Nerves intact and lymph nodes clean. Catheter and staples out on 12/13/06.
Pathological stage: T2B. Gleason 3+4. Cancer confined to prostate.
First PSA will be on 1/3/2007

Posted 12/17/2006 11:26 AM (GMT -7)
CC,
 
There are a few long timers in her that sometime jump in with their wisdom. We do have Pete! He's now entering a wonder new chapter of his life. There can't think of who else at the moment. In WebMD's support group there are quite a few long timers.
 
I refrain from calling my husband a survivor. I prefer to call him by his name without the desease. After 12 years, he shouldn't be living with a diagnosis hanging over his head nor should his family. For a decade he chose to let a diagnosis attach itself as a part of who he is rather than an illness he had endured. It did nothing more than take a decade of youth away from him. It took me forever it seems to convince him his cancers were not HIS....plenty more have the same deseases. He had...or has if it were the case, a cancer, twice. How he proceeds with his life is his decision. He doesn't attach high coesterol or hypertension the same intimate way and those will kill him if left untreated too. May be the death of him given such a strong genetic history even with treatment. The C word is such an ugly word because we associate it as something more deadly when in fact, heart attacks and slow death from other desease processes are more likely going to be the death of most all of us.
 
Once Paul made cancer less a part of his being and more a part of something he had happen, he started to change. Two years later..Thank God, he's really able to let his own persoanlity be who he is again. 
 
I'd like to urge you to join as many fourms as you can or better yet, find a local chapter of UsToo, a cancer support group. No condition or desease should be "who" we are. Nothing should ever have that kind of control. You were cured I am assuming? 
 
God Bless and welcome aboard
 
Swim
 
 
Posted 12/17/2006 4:42 PM (GMT -7)
Thanks for the feedback. Swim, you mentioned that your husband is ignoring his Cholesteral and high blood pressure. Unless he's received an "all clear" from his doctor that could be very dangerous. Within a year following my cancer surgery I was diagnosed with coronary heart desease requiring immediate by-pass surgery. My doctor has checked up on me every 4-6 months over the last 10 years, with regular stress tests, blood tests, and physicals. He has prescribed cholesteral lowing meds that have been very effective. (total reading less than 130) with or no apparent long term side effects. If we had ignored my elevated cholesteral, I wouldn't be writing this today. I would have missed the love and companionship of my grandsons, and wouln't be around to give away my daughter when she gets married next year.

The long lasting negative effect of PC is the ED. The miracle drugs such as Viagra an Cialis have taken on the image of silver bullets. IMHO, they're not. They may help with ED caused by unrelated drug treatments for blood pressure, diabetes . . . heck even Rogaine has a sexual side effect. PC surgery, even when nerve saving micro surgery is used, can result in ED untreatable by drugs, so dont' set your hopes too high.

My wife has been very loving and understanding. This is critical ! We have had a satisfying love life relying on alternate means to orgasm rather then conventional intercourse. We at first tried the pump and injections because we believed that our objective was to return to a "normal" sex life. The pump didn't work well and the process was de-humanizing. Injections, though very effective, were inconvenient, not very spontaneous, and kinda' scarey to use. We eventually adapted and adjusted. ;-)

Thanks for letting me vent a little. I didn't realize how lucky I really am. Best of luck to you all.
Posted 12/17/2006 9:45 PM (GMT -7)
C,

You sound more lucky than unlucky! You have gone through some serious situations and made some serious decisions. Your kind of success, even in the face of post-treatment ED is nothing short of amazing. 11 years ago early detection was still in its infantcy and thorasic surgery was still a long way from what it is today. I'm definately impressed. God Bless you!

I type slower than my brain moves so a sentence sometimes doesn't complete my thought...just ignore my errors! Secondly, I should say Paul does take good care of his inherited cholesterol and mild HTN. My thought was meant to say that if we don't personalize conditions like that, why do we (in general) tend to personalize by saying "my cancer." I'm weird I guess because I depersonalize, perhaps in a effort to take control away from disease as much as possible. Guess it's a game I play that keeps me sane.

The way a couple chooses to return to a traditional sex life is indeed a personal decision. Sounds like you and your DW have adapted. In our case, we've managed to return to a fairly normal sex life albiet it isn't like it was.
It is in fact, better because the shell had to come off and creativity found a place where before mother nature provided enough. To be so bold...he's a more attentive lover now than ever. A bonus for both of us!

Paul does fairly well on meds and occasionally with nothing at all. There are ways, as you said. We don't mind shots, rings or pills. Never really tried the pump to get a useable erection. If the time ever comes when he should consider an implant, I'm all for it if that is what he wants.

Hang in ther with the group a while. We could use some experienced wisdom and we'd love a new perspective....or should I say, an old perspective?

Be Well, Swim
Posted 12/18/2006 6:21 AM (GMT -7)
cancervivor, we hope to be here for many years and participate in a long-term survivor discussion.
Husband Jeff 56 years old diagnosed July 27, 2006
PSA 6.5, 2 positive areas in biopsy, Gleason 3+3=6
Radical Retropubic Prostatectomy August 30, 2006
pathology report - all clear - cancer gone
1st post-surgery PSA test 0.1
no more pads Oct 12, 2006
2nd post-surgery PSA test 0.1

Posted 12/18/2006 6:35 AM (GMT -7)
WOW!!
Hey C, 11 years! Congrats!! I think all of us here who are relitivly newbee's compared to you are very impressed! You sound like you have the kind of life we all would be happy with. A loving wife who understand and stands by you and 11 years clear of P.C. I understand that you are still wondering if the bugger "C" will come back. I spent the first 3 years terrified and hiding my feeling from everyone in my own little hell. I did not accept my sexual situation or the rest of the changes my body went through. (Read some of my old posts!) But with the help and support I've found here and a couple of other people, I have totally changed my phillacaphy twards this disease and my life. I am taking control of my health issues and opening up to the point I'm discussing things I'd never dreamed of talking about with friends, let alone with total strangers. I feel so much better! And as for P.C. I concider myself a survivor! It's gone! I am now taking Testosterone replacement to hopefully regain my old persoanlity and life style. I want to be me again! Screw the "PC"!!! I am learning to deal with the little stumbling blocks it has put in my way! So yes, I am cured! Thanks for your post! And welcome to the club. I'm sure you can help alot of people here, so I hope you stick around!
Your new friend, Pete
53 years old, Surgury, Radical Prostatectomy 8/20/03, PSA 6.6, Gleason 3 + 3 = 6, Adenocarcinoma extent (moderate) Stage & Margin:T2NOMX, No Metastases, Organ Confined, bone scan: Neg.  

Posted 12/18/2006 2:49 PM (GMT -7)
Cancervivor,   Interesting thoughts and congrats on 11 years.   As always SWIMOM you were Eloquent. I thought i was getting to be an old timer here  with 2months under my belt!!   BUT I do want to talk how maybe I am a little different now. I am a little more standoffish and  I really feel comfortable here on this sight. My family has been terrific I have never been this close to my wife as now. But I feel slightly different. Probably I need some time  but I enjoy my Comfort Zone. Does this make any sense?        Shepla
Posted 12/18/2006 2:57 PM (GMT -7)
Hi Everyone and right on Shepla, my wife and I are closer since the diagnosis and RRP. I had some ED prior to PCa and we are about at the stage where we will find out what we need to do next to make our relationship even better. Like Toby Keith sings, "I ain't as good as I once was, but I'm as good once as I ever was".........

Jim
Age 72. Diagnosed on 11/03/06. PSA 7.05. Gleason 3+3 on both sides.
Clinical stage: T2B.
RRP on 12/7/06. Nerves intact and lymph nodes clean. Catheter and staples out on 12/13/06.
Pathological stage: T2B. Gleason 3+4. Cancer confined to prostate.
First PSA will be on 1/3/2007

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