One year today...some days it almost seems surreal...

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41diagnosed
Regular Member


Date Joined Jun 2007
Total Posts : 176
   Posted 9/17/2008 8:44 AM (GMT -7)   
It's been a year since my surgery.  I'm doing well.  No pain, fully continent (though every now and then, and i do mean VERY rarely, a drop or two escapes if i really have to go badly and don't heed the urge).  I want to reiterate that this is so minor that it is no more or less significant than the drops that escape after you urinate.  I don't even think about the need for a pad. 
 
I have struggled with the ED and was feeling like the only thing that would ever work was the Tri or Bimix injections.  I periodically would try oral meds (Levitra) but it seemed hopeless and ineffective.  Then all of a sudden, within the last month, a response. Amazed and excited, I've been gradually seeing improvement.  If this trend continues, my hope to be off injections may be realized.
 
Anyone new here, BE ENCOURAGED.  I will summarize my journey and be honest about how I felt.  I was DEVASTATED when I was diagnosed and learned about the treatment options.  Incontinence and ED, NOT ME I thought!  Honestly, I feared the side effects of treatment more than the cancer itself.  My family told me I was in denial, crazed and angry and needed to concentrate on being cancer-free and not on the side effects.  Easy for them, I thought.  It wasn't their concern to be incontinent and face a lifetime of sexual dysfunction at 41! 
 
I couldn't relate to most of the people I read about and talked to.  Their life stage and issues were different from mine.  All their kids were grown and out of the house and I had twins who were 9 years old. I was worried about how I would ride a bike with my kids while wearing a diaper.  How would I iceskate with them?  How would I pick them up and toss them in the air? How would I remain the energetic active person that my wife married if I was incontinent and had ED?  Or would I become reclusive and depressed?  And would any of it really matter if I would be dead by 50?  Negative, yes.  I was negative.
 
I felt like I was walking the plank when I went for surgery.  My wife said she was afraid I would bolt before they sedated me. I struggled with the decision between surgery and Proton Therapy.  The Proton Therapy sounded so EASY.  3 months in Southern California at Loma Linda, working remotely, and I'd bring the family out once a month to visit, and we'd get through it.  But ultimately it didn't seem like the best option for me...you can search the archives for my write up on my decision.  I literally cried when I called to cancel my appt at Loma Linda.  After surgery, I was OUT OF MY MIND over the minor incontinence I had.  While I knew others were worse of than me, I was still crazed by the drips and pads in my underwear.  I felt like an old man and hated my predicament.
 
I worked my way through it and saw the improvements that people (doctors, fellow survivors, etc.) said I'd see.  I was over the minor incontinence 3 months out from surgery and no more pads.  I still was dealing with ED and bummed about that.  And now, a year out, I'm seeing the improvements that people said I'd see. And those same folks are telling me the improvements will continue for up to 24 months past surgery. 
 
So believe what you hear rather than doubting all of it.  Easier said than done, I know.  I doubted everything.  Each of us absorbs and processes the information individually.
 
I just want folks to know, there is a light at the end of the tunnel if you are diagnosed early and are fortunate to not have advanced disease.  The fear of positive margins, the fear of being the one who has worse side effects than the next guy, the fear of your PSA rising despite a good pathology report...these fears are real, because these outcomes exist.  I've already been on the short end of the stick being diagnosed at 41.  So I understand that it's hard to negate these concerns.  But we all have to remind ourselves that our odds of survival are good, and our odds of having a good quality of life post treatment are also good.
 
I have come to resent the Proton BOB newsletters that harp on the negatives of surgery and say nothing of the positives.  They NEVER talk about the guys for whom Proton Therapy failed, and yet they exist just as they do for surgery since the statistical outcomes are about the same.  But they point to the surgery failures every day.  I've come to see it as hypocrisy.  Surgery is a viable treatment option and the others have merit as well.
 
My hope for everyone here is to maintain as positive an outlook as possible.  The statistics, regardless of treatment options, are in our favor.  This site has great people at it who have continued to be supportive despite adversity.  I am forever grateful to have found this forum and for the information I gathered here.  It was pivotal to my decision process. 
 
I've observed people here who have gotten themselves wrapped around the axle about people praying for them, or promoting one treatment option or another.  As humans, what makes us individuals is our ability to intake information and different view points and then process them to make our own decisions.  As for me, I found it all welcoming, supportive and helpful.
 
So I will keep coming back and sharing my journey and I hope that for some of those who read my posts that it provides hope and encouragement for their own journey.
 
Doug


 
43 yo. now
 
5/07 PSA 4.65 at routine physical
6/07 biopsy Gleason 7 (3+4)...diagnosed at 41 y.o.
6/07-9/07 manic research and interviews with physicians across the country in search of the "right" decision.  I went to Mass General in Boston, Loma Linda, University of Chicago and Northwestern.
9/17/07 - RRP at Northwestern Memorial by Dr. William Catalona.  Thankful the father of the PSA test was right here in Chicago.
Post op path report confirmed Gleason 7 (3+4). negative margins, no seminal vesicale involvement, no lymphatic or vascular invasion, bladder and urethral free and tumor volume was 5% of 27.3g.  
9/27/07 - catheter removal...let the games begin...
12/31/07 - threw out the pads (I only had used 1 pad per day for protection against minor drips)
 
I started Trimix 8 weeks after surgery with success.  I hope someday I won't need injections, but I hope more that my PSA stays at 0 forever.
 
9/17/08 One year past surgery and doing well.  PSA less than .1 and ED continues to get better and showing reasonably good results using Levitra which for a long time did nothing. 

Post Edited (41diagnosed) : 9/17/2008 10:16:56 PM (GMT-6)


LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 9/17/2008 8:55 AM (GMT -7)   
Very well said...and for one that is under going surgery tomorrow very encouraging. I am like you, the incontinence and ED are the biggest problem than the surgery itself. But it is stories like yours (and others) that mean so much to me. I am sure I will have my discouraging moments after the surgery...but I will take heart in what you and others say...give it time and you will heal. Over the weekend I saw an engraving on a ring....If God brings you to it...He will bring you through it.

Thanks 41....don't know your name...but thanks
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal-Gland 38 cc
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral (Perineural Invasion present at base)
Gleason (3+3) 6  Stage T1C
August 23 - Bone Scan - Hips, Spine and ribs marked uptake - X-Ray showed clear -Hooray
Sept 9 2nd DRE - questionable - TRUS...shadow in base - Gland now 41 cc
Robotic Surgery scheduled Sept 18, 2008


Roger G
Regular Member


Date Joined Apr 2008
Total Posts : 150
   Posted 9/17/2008 10:40 AM (GMT -7)   
41,
 
That sounds eerily familiar.  I almost did bolt from the presurgery area.  Thank you for the sorry and encouragement.
 
Roger

Age: 43 (2008)
DRE Small Ridge on prostate, PSA 1.5
07/2007: Diagnosed cancer, T2c, Gleason 3+4=7
09/2007: Laparoscopic prostectomy @ Hamilton General, 4 hrs.
              Both nerve bundles spared
              Pathology Report: Tumor confined w/in prostate
              T2c, Gleason is 3+3=6
              Went home with JP drain
10/2007: Made return trip to hospital.  All urine was comming out JP drain.
10/2007: Catheter removed. Next to no leakage
11/2007: 1st PSA <.003 :)
              ED: Started Viagra, no response yet.
12/2007: Had confidence to go padless!!!!!
12/2007: ED:  Stopped Viagra as it's causing hemroid problems.
01/2008: 2nd PSA <.003 :)
              ED: next to no response.
04/2008: 3nd PSA <.003 :)
              ED: next to no response.  Changed the Viagra prescription.
07/2008: 4nd PSA <.003 :)
              ED: Still NADA.  Changing to Cialis.
 


norskie
Regular Member


Date Joined Jan 2007
Total Posts : 376
   Posted 9/17/2008 11:38 AM (GMT -7)   
Well said and many of the same thoughts went through my mind in deciding what treatment route to take. I have been luck in so many ways and not so lucky in the fact it came back on me. But I am very hopeful the follow-up treatments has been sucessful and I still say I am very lucky. I found it early, have taken action and the fight is on vs I could still be wondering around not knowing and by the time I did find out, well maybe I wouldn't have the many options I have today.

Continued good luck and sucess!
Norskie
norskie
Current age 50, Age at Dx-48 PSA 6.22 on 9-26-06
Biopsy 11-01-06, 2 of 13 cores 10% cancer, 2 other cores abnormal Up-dated 20% prostate cancerous
Gleason score 3+3=6 After Surgery Pathology report 4+3=7 a couple agressive Grade 5 cells found
Da Vinci surgery 01-09-07 UW Madison
Pathology Report- cancer 100 % capsual contained 1-18-07
1st & 2nd Post PSA Blood Test .1 and less - Undetectable
3nd Post PSA Blood Test 01-17-07 .3
March 27th PSA .422 Begin Salvage Radiation April, 14 2008
Radiation Complete June 4, 2008 36 treatments
August 5, 2008 PSA .09 or < .1 again
Incontenence-Pad free since end of May 07 4 1/2 months post surgery 
ED back to 95% prior to surgery - no medication required.


AndrewJ
Regular Member


Date Joined Jul 2007
Total Posts : 25
   Posted 9/17/2008 12:09 PM (GMT -7)   
Doug,

I'm so happy to hear how you are going and that things are "looking up". The old 1-year anniversary sure does lead to a lot of reflection. I actually appreciate the post-PCa propensity to reflect more on life and what is really important and I hope I never lose this. As I think I told you at the time, I too felt like I was driving to my own execution and wanted to escape from the prep room and hide in the hospital grounds. Still, discovering it when we did and at relatively young ages means that the surgery probably saved both our lives. I wish you continuing good progress. Take care and enjoy being cancer free.

Andrew
46 years old (45 at diagnosis), Australian living in Germany
PSA: started around 3.5 in 2005, 6.1 at time of surgery
Biopsy: nothing found in 2006, 3 May 2007 3 of 24 cores positive, Gleason 3+3 or 3+4 depending on pathologist
RPE in Munich, Germany on 22 June 2007
Post surgery pathology: organ confined but less than 1mm from margins, Gleason 3+3, pT2c, Lymph nodes removed and clear
First post-surgery PSA 31 July 2007: 0.01 Confirmed in September evry 3 months since. Fully continent immediately after removal of catheter on Day 8.
No potency issues but still taking small doses of generic Levitra "as required" as my security blanket.
This man knows he has been VERY lucky.


mvesr
Veteran Member


Date Joined Apr 2007
Total Posts : 823
   Posted 9/17/2008 4:20 PM (GMT -7)   
Hi 41

Well said

Mika
age at dx 54 now 56
psa at dx 4.3
got the bad news 1/29/07
open surgery Duke Medical Center 5-29-07
never more than 2 pads
Tossed the pads this spring
ED still a problem
first year PSA less than zero
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 9/17/2008 4:33 PM (GMT -7)   
Doug,
You just said it perfectly. There is always hope for everybody. And there is taking on adversity head on that can strengthen hope so much! Great job! You my friend, are quite an inspiration!

Tony
Age 46 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007 @ The City of Hope
Post-Op Pathology: Gleason 4+3=7, positive margins, Extra Prostatic Extension (EPE)
Bilateral seminal vesicle invasion (SVI); Stage pT3b, N0, Mx
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (September 17 '08): <0.1 ~ Undetectable!
 
You can visit my Journey at:
 
STAY POSITIVE!
 
 


Cedar Chopper
Regular Member


Date Joined Mar 2007
Total Posts : 432
   Posted 9/17/2008 5:34 PM (GMT -7)   
Doug (Going On 44....)

I don't get to visit this site much these days but I watched you join this site and make your way through your decision tree and treatment.
I have a moment to chime in now with the rest that-
     you have given a lot of good encouragement to all!
People do tend to feel strongly about their choices of procedure, facility, physician [...inflatable vs. foam donut pillow  <|||;-) ...]. 
Surgeons do believe in surgery and radiologists do believe in radiation.
(Texans tend to believe in cowboys....) 

I remember how Ms. Bluebird would firmly and politely (as only she could) scold people here about advocating their choices at the expense of another person's choices.  
(There is a joke about a Chihuahua that stands on his front paws to "lift his leg"/make-a-statement on a tree that comes to mind...  NEVER MIND!)

Anectdotally, I had my surgery on the same day TC-LasVegas-Tony did.  It worked for me.
(Nice to see that latest "<.1", Tony!  I'll seriously one day have you introduce me to our cousins the Havasupai...  Keep soaring, Kind Eagle.)
Some (e.g., those with comorbidities) wisely choose to avoid surgery.
Proton Beam is not indicated for everyone, either....
Only the patient can make a completely informed decision.
 
  My motive for jumping in today is not just to say hello to old and new friends.  (Hello!)

WHATEVER PROCEDURE A PROSTRATE CANCER PATIENT (OR ANY CANCER PATIENT FOR THAT MATTER) DECIDES UPON, I FEEL I CANNOT SAY THIS ENOUGH:
The patient is in emotional turmoil.  For many many diferent reasons I feel:
Get a second opinon from the best facility you can manage.
Don't delay, JUST seek the best SECOND OPINION available while you wait for your initial procedure of choice.


ICTHUS!
CCedar (going on 56)
2 Years of PSA between 4 and 5.5  + Biopsy 23DEC06 
Only 5 percent cancer in one of 8 samples.  +  Gleeson 3+3=6
OPEN R P 16FEB07 at age 54. 1+" tumor - touching inside edge of gland.  + Confined:)
Pad Free @ 14 weeks.  PSA: 6 mths <.003  :)   9mths <.008
:)  1 Yr <.008 :) 
18mths <.008 :)  
  5 Year Colonoscopy 19FEB08:  Clear!

41diagnosed
Regular Member


Date Joined Jun 2007
Total Posts : 176
   Posted 9/17/2008 9:46 PM (GMT -7)   
LV-TX: Good luck!

Roger G: Try Levitra...Viagra didn't work for me, but Levitra has started to. Everyone is different. Glad to hear I wasn't the only chicken in the pre-op holding room :)

AndrewJ: love that you are still quietly keeping up with this site. i will always be appreciative that you joined to respond to my desperate initial post. you were the first person my age that i talked to, and it was comforting to know i wasn't alone. you are the luckiest dude with no ED issues, and i am envious. but i'm getting better. i still plan to get to Germany some time and we'll have to meet.

Norskie: glad to hear the follow-up treatment is working! sounds like you too understand what I mean about staying positive despite adversity. keep it up!

TC-LasVegas: to hear you call ME an inspiration is the highest compliment. the energy you provide to so many people here is admirable. i remember talking to you and thinking, if he can get through it and be positive, surely i can do it too. i am so glad you are doing well. you have been an inspiration to us all.

Mvesr: Thx

Cedar Chopper: you are one of those who has been posting here since I joined and represent some of the many familiar names that I encounter whenever I come here. It is a family of sorts here and one that is great to find.

There are so many others that I can't list all of you. Thanks for being here at Healingwell.
 
43 yo. now
 
5/07 PSA 4.65 at routine physical
6/07 biopsy Gleason 7 (3+4)...diagnosed at 41 y.o.
6/07-9/07 manic research and interviews with physicians across the country in search of the "right" decision.  I went to Mass General in Boston, Loma Linda, University of Chicago and Northwestern.
9/17/07 - RRP at Northwestern Memorial by Dr. William Catalona.  Thankful the father of the PSA test was right here in Chicago.
Post op path report confirmed Gleason 7 (3+4). negative margins, no seminal vesicale involvement, no lymphatic or vascular invasion, bladder and urethral free and tumor volume was 5% of 27.3g.  
9/27/07 - catheter removal...let the games begin...
12/31/07 - threw out the pads (I only had used 1 pad per day for protection against minor drips)
 
I started Trimix 8 weeks after surgery with success.  I hope someday I won't need injections, but I hope more that my PSA stays at 0 forever.
 
9/17/08 One year past surgery and doing well.  PSA less than .1 and ED continues to get better and showing reasonably good results using Levitra which for a long time did nothing. 


Lungman
Regular Member


Date Joined Jan 2008
Total Posts : 276
   Posted 9/18/2008 4:57 AM (GMT -7)   
I appreciate your post, my 1 year anniversary was Sept 5, and I understand your feelings. The last thing I thought I would hear out of the Urologist was "cancer", esp at my age and general overall condition, been really watching my diet and routinely exercising for a number of years. Both of my parents died with different cancers, and hearing this was equated with a death sentence for me, I was devastated. Over the last year, I have experienced the full range of emotions, from elated immediately surgery, knowing that the cancer was removed, to depressed and despondent some months later. Incontinence was not a problem for me, but the ED has been different. Initially, the oral meds did nothing but make me flush and cause nasal stuffiness, went on to BiMix, which works well, but I don't like the "programmed" nature of using them. However, beginning on month 10 or thereabouts, erections (partial) began to return with manual stimulation only, this has continued to improve and with time, I think ED will be a thing of the past. I don't really think that the public in general has a clue of the devastating nature of this disease and its lingering effects, almost everyone tells you how lucky you are, it is the most treatable, if you have to have cancer it is the one to have, and the list goes on, as everyone thinks of prostate cancer as a brief passing illness. To reinforce my point, September is Prostate Cancer Awareness month, hardly a mention of it in the media, little if any support from the major groups like ACS, nothing to compare with other major cancers, ie colon and breast. Time is a great healer. I certainly sympathize with anyone newly diagnosed as well as those who have been dealing with prostate cancer personally, it is a formidable foe but with time and education, can be managed. This forum has provided me with more encouragement and education than all of the MD's I have seen combined. The success stories bring me hope and the tragedies make me realize that I am in fact fortunate I found this early, and am even more diligent now than before with issues regarding my health. I have worked in healthcare for 30 years, and going through this has given me a newfound empathy for anyone with any illness, nothing is minor, especially when it is involving you or your loved ones. To everyone here, Thanks, we are all here together and that is very comforting to me.

Randy
46 you when diagnosed, now 47
Pre-Op PSA 9.9
1 of 12 cores positive, Gleason 3+3
DaVinci on 9/5/2007
Post-Op Gleason 3+6, Negative Nodes and Margins
Less than 1% of prostate involved with CA
3 Month PSA 0.01, 6 Month PSA 0.01, 9 Month PSA 0.01
Incontinence resolved 9/15/2007, one day after cath removal
ED showing significant improvement.
Cialis 5 mg every night.
Success with BiMix


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 9/18/2008 7:54 PM (GMT -7)   

  Hey 41 you did great! Approaching my TWO year mark and what a wild ride it has been.  As everyone knows my "surgery" case has not been the greatest.  But I have been posting 000's on my PSA's.  The ED is not that much of a problem.  The UIc has been a dreadful pain in the "hiney" so to speak!  But I'm really not sure I would have made any changes in my treatment options.  We all choose what we do for our own reasons.  Gool luck in the years to come.

    KW

 


    43 at Dx and Surgery
    PSA 5.7, Biopsy 3 of 12 positive (up to 75%) all on left side of prostate, Gleason 7
    RRP on Oct. 17, 2006 - Nerves on right side saved. All Lab's clear. 
    Cathiter in for 28 days due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00.
    ED workable and usable with Viagra.
    Feb. 20th, 2007 - Feb. 4th, 2008  Cystoscope, Two Collagen injections,Second Opinion Consultation for Incontinance at OU Medical Center, Bio-Feedback training, Chiropractic, Accupuncture  to try to resolve ongoing incontinance (4-6 pads a day)  All PSA's 0.00.
    Feb. 22nd, 2008 - Surgery to install the AMS AdVance Male Sling.
    March 27th, 2008 - Sling not working, Little or no improvement.
    April 18, 2008 - Collagen injection.  Back to using 4-6 full pads a day within a week.
    May 14, 2008 - Another collagen injection to try to Band-Aid the leaking for our June cruise.  Will start making conusultation appiontments for AUS after we return.
    July 14th, 2008 - AUS consultation with Dr. Morey at UT Southwestern (Dallas).
    July 30, PSA 0.00.
    Aug. 22nd, 2008 - AUS Surgery by Dr. Morey
    Oct. 6th, 2008 - AUS Activation by Dr. Morey
     


kdnole
Regular Member


Date Joined Jun 2007
Total Posts : 152
   Posted 9/19/2008 12:54 PM (GMT -7)   

Well said Doug!

Never thought about trying Levitra. I'm getting tried of piercing the general. yeah


Age 44
PSA 4.8
Gleason 3+3=6
T2
Biopsy - 3 of 12 (2@20% / 1@80%
Da Vinci 7/31/07 @ Duke
2.5 hr. surgery, released from Duke within 14 hrs.
Saved both nerve bundles. 
Foley out 8/10/07
Positive Pathology Report 
Near left side nerve bundle
New Gleason 7
Oncology visit in the near future for radiation
Back to work 3 weeks following surgery - Sales
 
9/13/07 - 1 Post PSA Undetectable less than 0.1 
 
9/17/07 - Pad Free! 
 
10/11/07 - ED, Trimix injection .2cc Tooo much but it worked. Now on .05cc, 3 times a week
No luck with viagra or pump. 
 
11/19/07 - 5 mth. PSA 0.1 (Ouch)
02/11/08 - Scheduled for CT Scan and MRI
2/27/08 - Started IMRT Radiation treatments
(6 weeks, 5 days a week)  
4/14/08 - Radiation complete with "NO" side effects.
6/17/08 - 1st Post Radiation PSA scheduled

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