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Posted 9/14/2010 3:09 AM (GMT 0)

I need to ask this, and I've not seen this mentioned before.  It's part of the hugely provocative issue of AS vs more invasive treatment, particularly the open RP my husband rec'd.  When quality of life is mentioned, it's the obvious retention of continency and potency that is listed.  However, how do the men who are opting for AS cope with living knowing that the cancer has been found in measurable amounts inside their bodies?  When my husband was diagnosed in early April, AS was definitely a route seriously considered.  His surgery wasn't decided on til June.  Before that, hip pain from sciatic ocurred, and we panicked, thinking the cancer had been more extensive and was in his bones.  One slightly less frisky night in the bedroom made him wonder.  Little hiccups in his body's functions would lead us, try as we might to prevent it, to worrying about things we couldn't see.  Bottomline, it effected our quality of life.  I doubt it would have improved over time.  The informed intelligence of the guys who've selected AS is obvious.  But how do cope with the KNOWING? 

Posted 9/14/2010 3:42 AM (GMT 0)
I think many people have that same issue. Most men want it out. Who knows that right answer? Really the right answer is the one that fits the individual man that make the choices for themself.

Cajun jeff
Posted 9/14/2010 3:50 AM (GMT 0)
As Jeff said it is highly individual. I personally wouldn't have a problem with it. Of course you are anxious, but after treatment you are still anxious about reoccurrance at the same level. I'm just as anxious about getting a psa test done now after treatment than I was during the 10 years that I was getting psa tests every three months.
A study that was done in Sweeden indicated that there was no difference in anxiety levels of those on AS compared to those who were treated. This is probably because that both groups felt comfortable with thier decisions.
JT
Posted 9/14/2010 5:27 AM (GMT 0)
There is nothing easy or good about Prostate Cancer..It always boils down to a choice between very bad things...No man in his right mind would do ANY of this unless he had cancer..All of us here are just trying to make the best out of a bad situation...
Posted 9/14/2010 9:18 AM (GMT 0)
Reading this thread makes me uneasy because I thought once the cancer was removed and the doctor says, "You're cancer free" that anxiety would be gone.  However, as John T. says, there is still anxiety each time a PSA test comes up.  I don't think my husband has thought beyond his check-up appointment on 9/28.  I must ask him about this. 

He is having severe testicle pain which began months before the Pca surgery.  The doctors have told him they have never seen anything like it even before the high PSA results.  I know this is a separate issue.  It just makes me feel helpless seeing him in pain.  Judy, this situation is different than M's - but maybe it is the fear of the unknown?

Aimzee

 

Posted 9/14/2010 11:28 AM (GMT 0)
My brother whom is into year 6 with W.W./A.S. says he almost has forgotten he has PCa, it is more of an after thought and does not consume his thoughts at all, like John T has mentioned it is individualized and also he has a fair working knowledge of PCa, that might even relieve the worry factor. He was diagnosed with the parameters of indolent PCa as per John Hopkins-Brady definition...that too would be alittle more comforting knowing such. He could be caught asleep at the wheel....but remember he is the driver not someone else.

Lots of arguments and controversies on what is a person to do and when...

 

Post Edited (zufus) : 9/14/2010 5:33:29 AM (GMT-6)

Posted 9/14/2010 11:38 AM (GMT 0)
NE, I don't think the fear of this disease ever really goes away...whether you're following AS or are post treatment. My husband is 2.5 years post op...in fact, he has his 6 month PSA this week...and my mind still goes through the "what if" scenarios. The only possible difference could be the fact that I know that if the disease comes back, at least the bulk of it was removed. But, as we all know, that doesn't mean that its gone.

As to how we would deal with AS had that been my husband's choice, I honestly don't know. Two and a half years ago, I knew practically nothing about PCa. Knowing what I know now (and I admit it's just a drop in the proverbial bucket), I don't think I would handle it well as my imagination is far too active!
Posted 9/14/2010 12:19 PM (GMT 0)

I was watching Doctor OZ just last night and he was talking about how EVERYONE has cancers cells in their bodies. And that its almost just bad luck as to who has problems with their body fighting these cells...

I'll see if I can find a link to the article - but he was also saying that artichokes and strawberries are two of the five known food items that will help starve the cancer cells.

I spend more time worring about getting killed driving on the freeway then I do about dieing from cancer...Then there's lightening strikes and asteroids to worry about smhair

Posted 9/14/2010 1:02 PM (GMT 0)
You're right about those lightening strikes, Steve. A friend, Bob, who is now 80, has been hit three times by lightening. He says it doesn't strike the same place twice --- he's been in a different spot each time. As for asteroids, now that's a biggie. Boom. Ouch!

Having dealt with the critical stuff, moving to the subject of how one would cope with AS I thought a comment from my surgeon interesting --- after I confirmed I wanted surgery, he said he already knew that from my personality. He said two classes of men always wanted surgery: businessmen and engineers. He said they were bottom line people who wanted the sucker out, and wanted pathology answers, now! Other guys could be more easy going. Interesting that a health decision may come down to more personality type than the science of medicine.

Sheldon AKA Sleepless
Posted 9/14/2010 1:34 PM (GMT 0)
Sheldon - re: Bob - you'd think once was enough.
Zufus - re: your brother - such strength! If he hasn't already, he should write an fyi advisory on how he arrives to such peace of mind. It's a gift.
Sephie, and most others - Surprisingly it's now the reverse of what it had been after biopsy. My husband is not worried in the least about his PSA screening anymore. The first zero result was enough. The second screen in Nov. is Zufus's brother's version of an after thought. No anxiety in the least. I suppose it demonstrates that for him, the decision was the correct one as far as balancing the QOL issues by aggressive treatment for his PCa.
StevenD - I'm going to need more than strawberries and artichokes. Hubby likes neither, but thank you for the thought. I've been encouraging the ground flax seed in a.m. cereal. I call it the prostate chemoprevention version of tamoxifen for women and bc.
Posted 9/14/2010 1:55 PM (GMT 0)
I agree with Zufus's comments. I have been on AS for over 18 months now. After the inital shock of a cancer diagnosis passes it goes to the back of your mind. I get the results of my first follow up biopsy tomorrow so it has been in my mind more in the last two weeks but assuming I get results that I am stable I am sure it will fade to the back ground again.
Posted 9/14/2010 2:06 PM (GMT 0)

I suspect that part of the reason that some folks cope with uncertainty better than others is explained by the phenomenon known as psychological compartmentalization.  In its’ simplest form this is the coping mechanism that allows people to focus on different aspects of their lives without being overwhelmed by another aspect.  A benign example is the executive who can maintain focus on his business and drive it to success despite issues of illness or marital problems in his/her personal life.  Another example is the soldier in war who must focus on the mission despite issues with his family thousands of miles away.  More extreme and less positive examples could include Bill Clinton being able to govern the nation while “compartmentalizing” his other exploits or the serial killer who carries on a seemingly normal life when he isn’t killing.

 

Personally, I have always had the ability to compartmentalize which I think helped my business success.  It also allows me not to be overly concerned about any upcoming PSA tests and I suspect this also helped me be able to focus on curing my cancer rather than “getting it out”.  That is. I knew that I could live with a radiated prostate inside me while I know that some men cannot…..that’s not a value judgment on either of us, rather just a different way of coping with the cancer.  I also know that I would have been a good candidate for AS if my stats had allowed and know that I would have been willing to consider a treatment like TFT (like realziggy) if I had been smart enough to know such a treatment existed when I was examining alternatives.

 

Finally, some psychologists believe that men are better at psychological compartmentalization than are women.  This may explain why my wife was firmly in the “get it out” category while I knew that I could easily handle another option.  This may also explain why we rarely if ever see women on our forum support AS as an alternative….or it may not explain that at all!  This also may help explain why more men than women are serial killers....

 

Thus endeth this Psychology 101 class…

 

Tudpock (Jim)

Posted 9/14/2010 2:54 PM (GMT 0)
Foremost one must educate oneself and realize not all cancers are the same. The fact that PCa rarely warrants chemotherapy alone show itself as being much more different than more virulent and potent types. Then there is also local and systemic types. I always shake my head when I hear another got to get it out of me now patient!! come back in a few months worrying about their follow up PSA and continual tests. How is that any different to a degree than those monitoring their PCa doing AS? I don't see that big a difference. As was said if you knew for sure PCa would be gone for good opting for radical procedures and possible lower quality of life issues on a possible permanent basis would make more sense to me. I know I said it before but since the advent of PSA testing the resulting early detection did NOT save the lives of many more men as was expected. In fact as before PSA one is more likely to die with PCa than of it. I also think that since I'm long divorced and have the fact that both my parent died fairly early neither of cancer that I look at quality of life effects more than many here who lets face it are the wives of men with PCa who are more willing to want their significant other to live as long as possible no matter the quality of life issues. I'm still fairly close to my ex but I know she would never fully understand my fear of long term to permanent incontinence and wearing diapers as I do.
Posted 9/14/2010 2:56 PM (GMT 0)
Tud - excellent post there. I am a big believer in the "compartmentalization" method of dealing with life. I have lived life that way, and currently teaching my youngest son to be more like that, as he has extreme "high and lows", and typically will take a small problem not connected to anything in his life, and end up throwing out the baby with the bath water.

Sephie - my best to John as he gets ready for this particular PSA test. I concede, this season the Yankees our the king, make sure to keep the Rays out of the Series.
Posted 9/14/2010 3:14 PM (GMT 0)
Tud,
Very good explanation. I've always compartmentalized my life, in combat, at work and now with PC. You make the best decisions you can with the information you have then move on and address other problems. I've also never had a problem making a decision based on imperfect information, as this is the reality of life.
JT
Posted 9/14/2010 3:20 PM (GMT 0)
johnt - i completely agree with your post too. i have made a lifetime of critical work decisions, quickly, and often based on limited or partial information. you make your decision, you stand behind it. if you make a mistake, you take it apart, find out what went wrong, and learn from it.
Posted 9/14/2010 3:41 PM (GMT 0)
On a day to day basis I worry and think less of dying from PCa than I do think about the ongoing side effects from my treatments. Hopefully they will improve with time and then maybe I will think more about dying, or perhaps more about living.
Michael
Posted 9/14/2010 3:47 PM (GMT 0)

Fascinating responses.  I appreciate the insights.  I've been thinking of drifting away from HW, but since the husband is still healing and dealing with the lingering ED, I've been monitoring many posts.  The ongoing lively discussions of the AS group (as I think of them) hit home, since we were briefly one of their camp.  When the nerves would set in, I'd draw tiny black dots on random scraps of paper to illustrate how small was the 15mm nodule viewed on MRI.  "You're still a good candidate.  It's not near capsular edge."  Ancient history now, as are the nerves...

 To new member *Optimist*, please let us know how you make out with your biop.

Purgatory - I think of you often.  Your procedure is coming up.  Still sending positive energy your way.

      

Posted 9/14/2010 11:36 PM (GMT 0)

NEIrish said...
My husband is not worried in the least about his PSA screening anymore. The first zero result was enough. The second screen in Nov. is Zufus's brother's version of an after thought. No anxiety in the least. I suppose it demonstrates that for him, the decision was the correct one as far as balancing the QOL issues by aggressive treatment for his PCa.

 

 

NEIrish, it seems my husband is in the same frame of mind.  Maybe there is no such thing as cancer free, but Ron does seem more relieved that the prostate is out.  Maybe the fact that he is retired is why he could not handle just waiting.  Or maybe he cannot compartmentalize as some of the gentlemen here?

 

Aimzee

 

(Sorry I couldn't get this quote to work properly!)

 

Posted 9/15/2010 10:03 AM (GMT 0)
The only thing that worries me about AS is that as you are "watching" things can take a turn quickly.

When M's PSA was 1.7, 1.8, 2.2 no one said a thing. It's WAY under 4. Then we watched it go to 2.5. Well, he had no symptoms and no enlargement upon DRE so why do anything? Then we saw it go to 3.2. Now that is quite a jump! Doc says lets WATCH it for 4 months. Come back then. Still no symptoms or enlargement upon DRE but NOW we are at 5.8 and NOW we are enlarged, and the biopsy showed considerably aggressive PC. We schedule the surgery and 1 month later we are at 7.9, the gland is out and we are looking at G7 (4+3) with some scattering 8 and 9, tissue and seminal vesicle invasion and 70% of the darn prostate is malignant.

We obviously were NOT candidates for AS but what IF we had the PSA taken 4 months later? What IF we had waited the full year as most do under 4? Would it now be T4 instead of T3b? God knows. And, what IF we had done something at 3.2 after the big jump - even though there were no symptoms and no enlargement upon DRE - would it have spread as much? Or might it have been contained?

You're right Jim. I am not a fan of AS. PC is an insidious form of C and it blindsided us. M's PC turned aggressive quickly and I agree with Tony who I have seen write that men under 60 should take more active steps if their PSA goes over 2 not 4.
Judy
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