Post prostatectomy/ PSA remains undet... - Advanced Prostate...

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Post prostatectomy/ PSA remains undetectable

Endgame profile image
17 Replies

5 years post robotic prostatectomy. I'm 63 , in good shape , exercise regularly. Still have bouts of depression as post surgery my life is so drastically different. PSA is undetectable. Still have times I long for my old life.

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Endgame profile image
Endgame
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17 Replies
van123 profile image
van123

I was diagnosed by the VA hospital in July and had a prostatectomy on Oct 2015. For the first month and half I had 0 bladder control and now leak enough I have to wear Depends pull-ups. My PSA after surgery was 0.07. I now have to start radiation in mid-April. I understand how you feel, but in talking to other Nam veterans, their friends who decided not to have the surgery have passed away within a couple of years. Easy to say, but hard to do is be thankful for each day of life you have. I am especially when my grand kids run and hug me telling me how much they love me. Hang in there and keeping fighting. It is worth it.

Shepard profile image
Shepard in reply to van123

I had the surgery in 2011 resulting in a 1.1 psa six months post.  Seems Agent Orange exposure in Nam gave me a aggressive cancer.  Took 43 IMRT treatments with no improvement.  Now I deal with the side effects of the radiation which cause daily frustration.  PSA now less than one following several years of hormone deprivation treatment (Lupron with Casodex added one year ago.)  I tried to the follow a "fail safe" path of treatment so there would always be options with failure.  Seems to me that Agent Orange makes the cancer really "mean".  Prior to surgery my highest PSA was 14, but it had been increasing geometrically.  I was Stage Three at surgery and am now Stage Four.  I believe in following protocol, but wished I had skipped the radiation.  Wish I had asked for more stats on remission/eradication.  We all have to make the choice of which path best fits.  I wish you PSA:  Zero forever!

JoelT profile image
JoelT

Endgame,

Are you feeling the need to do anything about the bouts of depression. Suffering either physical or mental pain is unnecessary.

Joel

Endgame profile image
Endgame in reply to JoelT

I don't want to take any more medications or go to any more doctors if at all possible. I find exercise helps me the most. I recently had to have open heart surgery and I'm still recovering from that ordeal.

Beauxman profile image
Beauxman

Yeah, I was a different person before surgery, so you and I both have good reasons to be depressed. However, I have found that having logical reasons to be depressed and actually being emotionally depressed are two different things. You can potentially have both, but emotional depression is often unrelated to actual circumstances, and it is treatable. In my case, the depression is a side effect of ADT, along with hot flashes. I asked my primary care doc for medication and got an SSRI, and it is very effective for reducing both hot flashes and depression.

CERICWIN profile image
CERICWIN

Regardless of sexual orientation, our lives are indeed changed forever by having cancer.     It's a life-changing experience, but then life IS change.     We can only try to cope as best we can from day to day.         The cancer has taken control of every facet of my existence, as it's advanced and has put so many restrictions on me.     I have to sleep in a hospital bed, I have to use crutches to walk, and have to have a paid caregiver to assist me with daily living.      But still, life is worth living, and I still have a semi-independence and live alone.        

But you're not alone, we're all going through this thing together. 

I wish you the very best of luck,

CERICWIN 

PeterArtiste profile image
PeterArtiste in reply to CERICWIN

RIGHT ON Cericwin. I like your attitude! We are together.  Hugs to you all.  I had a panic attack tonight. took me awhile but calm now and bone pain, although always ringing on the forge is disapating as the hydromorphone kicks in.  Peter Artiste~

CERICWIN profile image
CERICWIN in reply to PeterArtiste

PeterArtiste, thank you so much.       This is an incredibly difficult time for those of us with advanced PCa, and it take so much strength and fortitude to continue.

My doctor prescribed Ativan (lorazepam) for anxiety, and it helps me on some of the rough days.    I know precisely how you feel as the hydromorphone kicks in and we get relief from the bone pain and other pains.      But the pain isn't the worst thing, it's anxiety and the feeling so ill that is the worst, and the depressions that we inevitably go through with advanced cancer.

And it's the worst for those of us with no wife or partner, who fight alone.      Some friends leave---they can't handle dealing with someone who has a life-limiting illness.     

I try to accept what's happening to me with courage, but it wavers at times, with the hormonal screw-up from the treatments,  but overall, I cope from day to day as best I can.

CERICWIN

greatjohn profile image
greatjohn in reply to CERICWIN

it is amazing how "scarce" some very long time friends become. Like they think it's contagious. I have a partner of 40 years...he's been great....but still feeling let down by friends. This castration shit...SUCKS.

BIG HUGS,

JOHN

Endgame profile image
Endgame in reply to CERICWIN

Thanks Cericwin. My partner and I have been together 26 years and he is 20 years younger than me. Don't know why he stays with me.

CERICWIN profile image
CERICWIN in reply to Endgame

Even I can understand why he stays with you; the answer is LOVE.

And I don't give a flying fig what sexual orientation anyone is, love is the most important thing in the world.

Eric

Shepard profile image
Shepard

I do also long for what once was and would guess most do, but here we are.  I would never have wished for present situation, but then I never wished to be 77 either.  It can all be overwhelming and my way of dealing is to put things/thinking in boxes.  There is the memory box which only contains the good stuff.  There is the good things that I can still do box.  There is the cancer box which contains the reality of treatment and results.  There is the "plans for the future" box.  I shuttle among them and give each the attention that is deserved at the moment and then go on with life.  To me it is important to be honest "in all things".  I can not do things the way I once did, but surprise I can still do most of the things I need to do - just in a different way.  I can get up the mountain - not pretty in form- but achieving the goal is what is important, not how you got there.  (Provided it was reached honestly - here honesty with yourself is paramount!)

Endgame profile image
Endgame in reply to Shepard

I appreciate your thoughts and words. I am developing such a " system" ... However, not as organized as yours yet. Thanks 

micwright profile image
micwright

how was urination after the prostatectomy? was it the DaVinci robotic method?

Endgame profile image
Endgame in reply to micwright

My surgery was with the DaVinci, and after the catheter came out , it took me about 3 months of concentrated effort to control my " leaks". I faithfully did the pelvic exercises and gradually gained control. I still empty my bladder more regularly just to make sure there are no accidents. 

Shepard profile image
Shepard in reply to micwright

Urination following the surgery was no problem; good control and no leakage even when lifting. I think the exercises were helpful. My control problems began after IMRT and continue today. Not so bad, I guess as I am able to get by with a simple pad. Still get unwanted surprises a couple times a week. My present issue is muscle tone and fatigue. Lupron keeps me at T=0. I plan to talk with my Urologist about allowing T to rise (just a little please.) I expect he will say "NO". Wonder if there are any patients with just low T protocols instead of flat zero?

drdanfee profile image
drdanfee

Hi, I am 69, will be 70 end of this year, 2016. My cancer was diagnosed in late stage, four, with bone metastasis .... so no cure at all. I'm on my third round of meds, with good results so far. I had medium Gleeson scores so that may be lessening my course of illness. Yes I miss being more sexual for sure, and yet my personal yen for romance remains undimmed so at least I'm not deprived of that capacity. Missing the good things of the past is normal up to a point that you alone can sense or determine. Maybe that 'grieving' will oscillate with learning to enjoy what is left in your current life? We walk a road through hard times .... all of us .... best wishes

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