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obsessing over post surgical issues such as ED, reoccurance etc

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Posted 12/16/2015 9:28 PM (GMT 0)
I remember prior to my PC diagnosis the obsession in reading anything and everything Dr Google had to say about prostate cancer. It became a daily ritual of reading every stat imaginable. then after the dreaded biopsy and the news that I did have PC, I became equally obsessed in determining what my life expectancy would be if I had RT, RP or opted for AS, which wasn't a real viable option. the obsession spilled over to finding the right surgeon .. looking at his statistics, success stories, his age, his skill level, hospital associations and should I consult with one surgeon or 20? Once I have taken a breath and calmed down, I ceased my daily consultations with Dr Google knowing I had made a decision and that took a great deal of weight off my shoulders.

I am nearly 13 weeks post surgery. No incontinence so to speak, ED is being managed and seems to be progressing slowly, first post-surgical PSA <0.02 and I am generally happy UNTIL I cam to this site. Please don't misunderstand. I think this site is vitally important because there is nothing better than to be able to share, provide and take comfort for others who share in this battle. My problem ( not with the site but with ME) is that I am going down that path once again, but on the side, looking at statistics, comparing notes etc. In plain English I read updates form others, who have had a similar experience as mine .. numbers and prognosis similar but then I read that their incontinence is returning after they ceases using Cialis or their minuscule PSA numbers are starting to climb .. .02 -> .04 -> .06 -> .03 . Is this a recurrence of my cancer? Has it spread? Do I need radiation, am I going to be put on a course of HT? I am starting to feel that anxiety all over again. I suppose I have to live with the fact that I have this disease. I have not been cured but right now .. today .. this moment for all intents and purposes i am cancer ( well prostate anyway) free.

I am going to have to look at this I suppose as a few of my good AA buddies of mine and take it one day at a time .. what else can I do

Post Edited (aldenyc2015) : 12/16/2015 2:32:50 PM (GMT-7)

Posted 12/16/2015 9:49 PM (GMT 0)
No incontinence, ED is manageable and your PSA is non-dectectable? Sounds to me like you hit the trifecta! I know it's easy to say not to worry and enjoy your good fortune, but that's probably a lot harder in practice.

But instead of sizing up how others compare to you, what if you thought of your visits to this site as "how can I help the new guys"? Clearly, you have a lot to offer since you just went through the treatment decision process yourself and lots of guys here can benefit from that. Maybe that would give you a different focus here...
Posted 12/17/2015 1:12 AM (GMT 0)
It is true that a lot of different things are experienced by the people who post here but it is easy to lose sight of the fact that everybody does not experience all the things that can happen. You are off to a good start after surgery. I was a little slower on the incontinence and ED recovery than you but everybody has their own path to take after surgery. Take each day as it comes and try not to let those nasty "what-ifs" pop up in your mind. I admit there were lots of times I had to remind myself of my own advice.
Posted 12/17/2015 1:46 AM (GMT 0)
Also... please keep in mind that people who end up having issues are much more likely to post here than the great majority of people who have their treatment, minimal side effects, and go on their merry way to live a long and happy life. yeah yeah yeah
Posted 12/17/2015 2:31 AM (GMT 0)
Aldeny, Welcome to the club of good outcomes. There are more of us than you might think. You're barely 3 months since surgery. I get it. I don't think the pre-test anxiety ever really goes away (I'm 9 months since surgery), but it's getting more manageable.

I agree with the suggestion that you ask yourself, "what do I have to offer the just diagnosed newbie or his partner who is scared ****less?" Figure that out, and your sanity level will improve. Understand that there is a meme out there that says that "surgery virtually guarantees terrible ED and Incontinence", which you and I both know from experience isn't true. Your experience is potentially valuable to any newcomer who is struggling with the initial process.
Posted 12/17/2015 3:06 AM (GMT 0)
2015....

What could've gone wrong has since my surgery. (Except for the fact I'm getting wood even with my cath yeah!!!!)


I only tell you that to tell you this....


My upcoming psa test? I give it virtually NO thought. I don't care. And...it's freeing. I've been free of ANY anxiety about it. The reason? Bigger fish to fry AND knowing it doesn't matter because a feeling of "I can handle anything" has set in.



What I'm trying to say is....Don't worry that things will get worse because. ..at some point, it will.


(Just in our case, it'll more than likely be something other - bigger - than prostate cancer). And not if but when that something bigger does come along ....Whether there's a little < or > sign in front of some psa test won't mean ****.

Post Edited (island time) : 12/16/2015 8:10:59 PM (GMT-7)

Posted 12/17/2015 3:56 AM (GMT 0)
Aiden that was a well thought out and articulate post. You HAVE helped newbies and veterans, just by posting it. You were completely clear in your intent not to offend tho: " we played wedding songs and you did not dance... We played funeral dirges and you would not cry " Or less poetically, ya can't please everyone. There is no contest here on who " members correctly " " We are all the same...we are all different" No less...no more... In joy the season...
Posted 12/17/2015 4:02 AM (GMT 0)
Alden, I feel ya, man! yeah
What i mean to say, is i am mentally, exactly where you are. I'm almost a year out of surgery, and am here regularly (except the last 10 days, as i was away on vacation). There have been many times that i feel that maybe, just maybe, i shouldn't be here any more, because the crap i read makes me nervous. I was the reverse of you, a G6 on biopsy, upgraded to a (3+4) after surgery. And i see soooo many 3+4 guys posting here about BCR. And yeah, it makes me nervous.
But the reality is, as was mentioned in an earlier post, that its the guys that have issues that tend to post here, so this population is not typical. And i look at the MSKCC Nomograms and see that my chance of BCR in 10 years is 1 in 10.
So i try not to focus on the stuff i read that upsets me

Instead, i think of guys i've met here, face to face, who have enriched my life. And of the guys that i believe i have helped here, who have arrived after me. So i stick around. Because i dont know any other way

We will all live, after diagnosis, with the fear of recurrence. Its part of the game, and the price we all pay for still being cancer free.
Posted 12/17/2015 4:21 AM (GMT 0)
Just list to Pratoman.

He knows his stuff. Especially on this topic.

Andrew
Posted 12/17/2015 12:37 PM (GMT 0)
I did cease the Cialis and had ED and continence issues but try to look at it with your glass half full...

One small pill per day solves my issues. That's a win in my book!

Jon
Posted 12/17/2015 2:04 PM (GMT 0)
I stopped Cialis 10 days ago. So far no issues on either front. We'll see what happens.
Posted 12/17/2015 6:25 PM (GMT 0)
I'm new to posting here...but for the record....

After my surgery I also was very fortunate to have almost no incontinence issues, just some really minor leaking that went away after a few weeks. The ED scares the crap out of me because I believe I'm young and I'm also recently divorced and dating someone I find very sexy...

I've ran the gamit on ED in my few short months since my 8/5 surgery...

We started fooling around after about 10 days...I was totally limp but found I could orgasm anyway and my partner was really great about it (and yes, the tongue still works!).

Tried a pump , what a joke...oral suction is much nicer anyway...

Got on Cialis (one a day) and it helped some but very slowly because I was also very early in recovery, I then discontinued the Cialis because it seemed to give me backaches and I couldn't get stuffable wood.

Moved on to Trimix injections, hell yeah that stuff works! I was in the ER after 4 hour wood first time using it..what a debacle...

Eventually I figured out my dosage level that would get me a stuffable erection for about an hour (longer than needed!) ;) But, I've had plenty of failed injections that didn't work, it's all about getting the injection into the right part of the penis...for me I can tell by plunger pressure whether it's right or not. This stuff works but the hassle isn't the most fun...but worth it if pills don't work for you!

I had a left over Viagra and tried that on a trip out of town to avoid taking a syringe and it worked pretty well, I must have recovered some since first try at pills...So I restarted Cialis and got a few stuffable erections...nice to get that w/o a needle! So, I recently ordered 12 Viagra pills from a Canadian pharmacy. Pills are $14 ea rather than the local $47 ea! Wish me luck with these, they are on the way from Barbados!

Cheers...
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