I'm feeling TEOTWAIKI coming

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PCgotme
Posts: 2
Joined: Mon Jan 14, 2013 11:24 am

I'm feeling TEOTWAIKI coming

Postby PCgotme » Tue Jan 15, 2013 11:50 am

Hi everyone,

Just thought I'd give a quick introduction. As my screen name indicates (PCgotme) I have just been diagnosed with prostate cancer and fear that I will shortly be losing an important piece of my life. With that in mind I started searching for information on how to deal with the forthcoming challenges and found this forum.

At this point I am hopeful (maybe wrongfully so) that I may be able to regain some sexual function after my surgery (I'm still looking into brachy though) and am looking for suggestions and insight on the rehabilitation aspect of things. I'm in my early 50's so am hoping to eventually recover something that resembles a 'normal' life.

I am fearful of these new life changes, but finding others in a similar situation and battling on is comforting.
(TEOTWAIKI = The End Of The World As I Know It)

All the best.

radiodec
Posts: 523
Joined: Fri Aug 31, 2012 2:52 pm
Location: Portland, TN

Re: I'm feeling TEOTWAIKI coming

Postby radiodec » Tue Jan 15, 2013 1:25 pm

Been to the end of the world, found a new one not the same but just as good.

PC some 13 years ago. Open Radical Prostatectomy. Profound ED post surgery but no urinary or bowel problems. Had to use injections, they worked well and reliably for about 11 years, then next trip to the end of the world.

Now into new world of penile implant. It is great, I am still progressing and learning and it is still great.

For you: First get rid of the cancer, second heal and use the new data on penile rehab, third look at situation after one and two and then determine the shape of the world and the path to a new and better one.

Nothing is the same after prostate cancer, it can however be fine and rewarding. Just remember if you eventually end with an implant, they can give a whole new meaning to sleeping together.

You have quite an adventure ahead, go forth conquer and enjoy what you can.

Dave
70 - married 47 years: RP - 2000, injections till 2012, AMS700LGX with 21cm tubes 2cm extenders 11/7/2012, failed 6/5/2017 --- Re-implanted 8/18/2017 with AMS 700CX -- Implants by Dr. David Morris, Hendersonville,TN

Andy425
Posts: 443
Joined: Fri Jan 11, 2013 7:52 am

Re: I'm feeling TEOTWAIKI coming

Postby Andy425 » Tue Jan 15, 2013 2:04 pm

PCgotme wrote:Hi everyone,

Just thought I'd give a quick introduction. As my screen name indicates (PCgotme) I have just been diagnosed with prostate cancer and fear that I will shortly be losing an important piece of my life. With that in mind I started searching for information on how to deal with the forthcoming challenges and found this forum.

At this point I am hopeful (maybe wrongfully so) that I may be able to regain some sexual function after my surgery (I'm still looking into brachy though) and am looking for suggestions and insight on the rehabilitation aspect of things. I'm in my early 50's so am hoping to eventually recover something that resembles a 'normal' life.

I am fearful of these new life changes, but finding others in a similar situation and battling on is comforting.
(TEOTWAIKI = The End Of The World As I Know It)

All the best.

As for dealing with the cancer itself, which is the first concern, check out this forum: http://www.healingwell.com/community/default.aspx?f=35

I was directed to FrankTalk from the above forum; they are quite knowledgeable and helpful there.

EDIT: Let me add one thing about "HealingWell": I had a Gleason 7, one nerve bundle near prostate node removed as cautionary, on pathology all non-prostate tissues including lymph nodes were clear, doc said I had as good a chance of remaining clear as anybody. But hanging around HealingWell was starting to depress me because there are many men there who have recurrences. Of course all the thousands of men who do NOT have recurrences probably don't post at forums so I had to keep that in mind, yet it still was messing with my head. My first two post-op PSAs were .02, last one was .04 (still considered statistically zero) and now I have to wait until March til the next one. So the fact that I had cancer never really leaves my mind, but I don't need to be reminded of it.
RP in 2012 because of prostate cancer. 100% ED, also some leakage problems.

regain-is-the-aim
Posts: 260
Joined: Sat Apr 03, 2010 11:09 am
Location: Indianapolis

Re: I'm feeling TEOTWAIKI coming

Postby regain-is-the-aim » Mon Jan 21, 2013 1:48 pm

PC:

Firstly, WELCOME. This is a good place and you will find many of us who have preceded you along this path. Like you, I was fine and enjoying life until that appointment with my Uro. Even with a PSA of 2.8 I had a least two nasty tumors in there that had to be dealt with. I chose robotic surgery as it was almost certain that my PCa was contained. My surgery went very well and my recovery was simple and I was back to full activity within 2 weeks. Now, the sexual side effects are there but you will find your new normal and life will be good again. It does take time and humor, and patience and, I believe a very good single malt scotch. . . . Besides penile rehab is fun and requires you to use him frequently as you remind everyone down there what the program was and it is time to get back into the "swing" of things.

Your sexual recovery should be enhanced with your youth; being younger seems to indicate a fuller recovery. While we will never be any better than we were before surgery it does come back and, while different, sex is good, amazing and continues to be fun.

There is a new protocol from Baylor Medical Center, which appears to enhance and quicken recovery of penile function. If you would like a copy I will be glad to send you a copy. Just send me an PM with your email and I will forward it. Interestingly, they start the rehab before your surgery and it goes strong from there. The main thing you need to remember is you are in charge of your penile recover and you need to assert your goals and aims; governed within the overall health status you have. Waiting, after normal surgery recovery, is the enemy so go for it.

Enjoy the fellowship here and join guys in the chat room when you can. WE do care and the new sexual normal isn't bad; just different!

If there is anything I can help you with please let em know. WE all have each others back here because we better understand the issues and fears. It works!!

My best.

Dick
"Regain-is-the-Aim"
Dick
PCa-surgery 10/06

bertrojo
Posts: 1
Joined: Mon Jan 21, 2013 10:20 pm

Re: I'm feeling TEOTWAIKI coming

Postby bertrojo » Wed Jan 23, 2013 8:58 am

At 80 regular PSA exam found PSA 107. Decided to go John Hopkins as local guy forgot my 6 month appointment as I did and scheduled biopsy 6 months down road. It would not made difference as PC was there. I am in hormonal therapy with 2.5 yrs behind me. Last reading a 0.6. Not all lobes with PC. Had ED for 15 years prior so I have searched for solution for years. Used Viagra but stopped working. Used vacuum and although it not very romantic, wife has gotten used to it(I think) Expensive as Medicare does not cover rings as they are special. Quality of life fine except low frequency in sex life. But that was the case before PC. So hang in there as there are many new medications coming out as I write. Meditate, pray but live your life to your fullest as each day is precious. Giving to others will let your forget your own problems. Check out John Hopkins as they are one of the leaders. :)


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