For the Newly diagnosed, go in with Low 'Expectations' and be Surprised!

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Regular Member

Date Joined Jun 2009
Total Posts : 77
   Posted 9/12/2009 10:39 AM (GMT -6)   
After I had resisted treatment for close to 4 years (Active surv. - and my numbers stayed pretty much constant), I went to see my Dr to finally discuss treatment. He agreed with my feelings about the side effects of treatment especially (and of course) ED! But he made a simple statement that I reflected over and over: "Impotence never kills anybody, Prostrate Cancer does!". This sounds like an obvious statement but I never quite thought about it that way. In the end, I made my decision. I decided to live with whatever happens. But most importantly, I made the decison also to go in with the lowest of expectations regarding especially incontinence and ED. This way, I'd appreciate every small improvement. Go in with the mindset that continence and ED improvement will happen but will take time, this way if it happens sooner good, else just take it in stride. The important thing to know is that you will recover!
Don't get me wrong, I have 2nd guessed my decision to treat sometimes. Ironically, my recent 'undetectable' PSA results fueled the 2nd guessing more as I wondered if I couldn't have taken this a bit  into my later years before treatment. However, nothing beats the peace of knowing, that the source of cancer is gone! Incontinence is gone! The fear that I'd not see my sons graduate from high school (due to Pca) is gone. ED not gone but improving (at least for me the stress of an imperfect erection is nothing compared to the stress of knowing I have cancer!)- and most importantly, I am alive!
God speed to all those about to go to treatment! Know that as demostrated by many on this forum, it shall be well!
>Age 41 (At Dx-July 05) -Psa during annual physical went from previous 2.8 to 3
>Biopsy by 'primary' Urol Aug 05 - Gleason 6 low grade. 2nd opinion at  Hopkins confirmed Dx
>Chose Active Surv (AS)- modified diet etc.
>Around Oct 07 Psa moved up to 5.5. I decide to treat at Hopkins. Not sure what kind yet. My doctor decided on re-biopsy first.
>2nd Biopsy Dec 07 at Hopkins was NEGATIVE for Pca! Nothing found in 14 cores!
>'Primary' Urologist baffled. Planned a saturated biopsy (22 cores) to settle issue once and for all. I wasn't going to do 22 cores wide awake!
>July 07 - Did MRI just for comfort. Nothing significant found. No spread. I'd live! Still in AS mode.
>July 08 - Saturated Biopsy performed. Cancer confirmed again (of course, you took 22 cores)! Same Gleason score, same grade, similar numbers but Urol says treat very soon! I am thinking not so fast - numbers are same and you told me it means not aggressive! In any case I agreed with Urol that I will go the way of the Seeds. I research seeds more and I don't like it.
>July 08 - Dec 08 I re-lapse back into AS mode but seriously researching/considering treatment options beside surgery - went on to Mass Gen and Georgetown to explore proton therapy and Cyberknife respectively. Anything but Surgery! Both experts who are about my age were unanimous in strongly declaring they will chose surgery 'if they were me'. In addition, I learn that if either if these radiation methods (and seeds too!)  failed, no backup plan (or will be complicated)! I got the message!
>Jan 09. Went back to see my doc at Hopkins. I decide to put my fate in the hands  of the 'Da Vinci Robot' then!
> May 09. Had surgery. some Pain and discomfort but normal. Pathology all clear. Gleason 6 as before. Feeling very lucky. I gambled (based on my numbers and got 4 more years!) on the slow nature of the cancer and took my time. Very happy I finally did it. Hoping for a great recovery of all 'key' functions. Great wife and family helping out.
> Sept 09 - 3month PSA - Undetectable!

Veteran Member

Date Joined Feb 2008
Total Posts : 655
   Posted 9/12/2009 3:17 PM (GMT -6)   
Greetings, Ike.  As several here have said on other posts - choose your treatment, whatever it is, and don't look back.  There is lots of second guessing we could all do, but I'm with you brother.  I like knowing where I stand.  I know there are no guarantees and a I could be facing further treatment down the road, but for now as far as we all know, they got it all and I am pressing forward with the rest of my life.  Sounds like you are as well.  David

Diagnosed Dec 2007 during annual routine physical at age 55
PSA doubled from previous year from 1.5 to 3.2
12 biopsies - 2 pos; 2 marginal
Gleason 3+3; upgraded to 4+3 post surgery
RRP 4 Feb 08; both nerves spared
Good pathology - no margins - all encapsulated
Catheter out Feb 13 - pad free Feb 16
PSA every 90 days - ZERO's everytime!
Great wife and family who take very good care of me

Veteran Member

Date Joined Aug 2009
Total Posts : 2447
   Posted 9/12/2009 4:19 PM (GMT -6)   

Your comments could not come at a more appropriate time. My surgery is Thursday. I am traveling from Orlando to Detroit.

I have found peace in the acceptance and confidence of my decision. I have done my research. Completed my due diligence. And interviewed the Dr. and any of his staff that I will come in contact with.

At this point it is out of my hands. All has been done to prepare (including a few thousand kegels) except to pack my bags, kiss my wife goodbye and get on the plane.

I am extremely peaceful now and just closing up a few loose ends around the house. The peacefulness and serenity I feel is a great place to be right now. It is me doing my part to be prepared.

I will not look back, I will not second guess, but, I will move forward and enjoy every day the sun shines and I suck in a deep breath. I will enjoy them with my wife as she battles her own demon cancer.

Together we will live life a little harder, enjoy the things we have put off and never look back and think "What If".

Thank you so much for your post and giving me the opportunity to add my 2 cents.

God Bless all who are here and fighting their own battles. May the prayers I say for all of you be answered.

60 years old
PSA November 2007 3.0
PSA May 2009 6.4
Diagnosis confirmed July 9, 2009
12 Needle Biopsy = 9 clear , 3 postive
<5%, 90%, 40%
Gleason Score (3+4) 7 in all positive cores
CT Organ Scan - negative
Nuclear Bone Scan - Negative

Surgery set for September 17th, 2009 with Dr. Mani Menon at the Henry Ford Medical Center in Detroit.

Elite Member

Date Joined Oct 2008
Total Posts : 25356
   Posted 9/12/2009 4:24 PM (GMT -6)   
Sonny, you remind me of myself the week before surgery. The seven prior weeks I was a nervous wreck. Then without any warning or anything in particular happening, I just came to terms with my decision. The last few days, I was like a new man. I thought for me, my open surgery was the best hope for my stats and prior history, and I was ok with it.

When I went for the surgery, due to a back log due to an emergency, I was in the pre-op a couple of hours longer than normal, and I started flipping out a little bit. But the logic of my decision kept coming back, and I would look over at my wife and daughter whom were with me, and thought of all the people that were with me in spirit that day, and the peace came back.

THen what really helped, was when they put the "i don't care juice" into my IV before being wheeled away, and then, who cares? lol.

Will be thinking of you Brother Sonny, may the best happen for you in Detroit.

David in Sc
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20%, Contained in capsule, 1 pos margin
2009 PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/09 met 2 rad. oncl, 7/09 cath #6 - blockage, 8/09 2nd corr surgery, 8/9 cath #7 - out after 38 days

Regular Member

Date Joined May 2009
Total Posts : 215
   Posted 9/13/2009 6:57 AM (GMT -6)   
This sounds a lot like my decision path Sonny. I made my decision after due diligence and much research. This included interviewing the surgeon and establishing that my choice was justified in my mind. After making that decision, I have waited eight months for the surgery and am two weeks out from having it done. I am in a very positive state of mind and have limited my expectations on incontinence etc which will put me in a positive mode if it improves quickly post op.

Once made, the decision needs no second guessing and I was able to get on with life as normal during this period. Lots of friends cannot figure out hiow I can appear normal when I have cancer. The way I look at it, you can mope around and feel sorry for yourself and pass many miserable days, or take the other road and enjoy life each and every day. It is somewhat beyond us all to change what we have so you might as well accept it and move on.

Keep well,
Age 64. Diagnosed with Pca January 2009, PSA 5.6, Gleason 3+3=6, T1c, TRUS biopsies of prostate left adenocarcinoma of prostate involving part of 1/4 biopsy fragments, less than 10% of the surface area involved, CT scan clear. Robotic Assisted Laparoscopic Prostatectomy surgery for treatment - September 29/09.

Veteran Member

Date Joined Aug 2009
Total Posts : 2447
   Posted 9/13/2009 9:42 AM (GMT -6)   
Thank you very much gentlemen for your kind, reasonable and supporting words.

I really truly enjoy the spirit of the folks at HW. I like all the rest have searched out other forums for info on PCa. HW is the first on my list of bookmarked sites, the one I come back to many times throughout the day and the only one I visit on a daily basis.

It is this positive and supportive spirit that continues to give me great peace and comfort.

Thanks so much to everyone here. I truly hope that in the days and weeks to come I can become such a valued member as the rest of you guys here.

60 years old
PSA November 2007 3.0
PSA May 2009 6.4
Diagnosis confirmed July 9, 2009
12 Needle Biopsy = 9 clear , 3 postive
<5%, 90%, 40%
Gleason Score (3+4) 7 in all positive cores
CT Organ Scan - negative
Nuclear Bone Scan - Negative

Surgery set for September 17th, 2009 with Dr. Mani Menon at the Henry Ford Medical Center in Detroit.

Regular Member

Date Joined Dec 2008
Total Posts : 369
   Posted 9/13/2009 12:49 PM (GMT -6)   
To both Sonny and Ike,
       As I return from a weekend getaway with my wife today, one year after my surgery, I read both your posts with interest. We had a great weekend, the fear of cancer is gone for now (all 0's so far). The incontinence is gone, still have to use mr. needle for sex but still have a satisfying result.  To quote Don Henley, "a little voice in side my head said don't look back,  you can never look back."
my age=52 when all this happened,
PSA went from 1.9 to 2.85 in one year, urologist ordered biopsy,
First biopsy on 03/08, "suspicious for cancer but not diagnostic"
Second biopsy on 08/14/08, 2/12 cores positive on R side, 1 core=5% Ca, other core = 25% Ca, Gleason Score= 6 both cores,
Clinical Stage T1C
Bilateral nerve sparing Robotic Surgery on 09/11/08, pathological stage T2A at surgery
No signs of spread, organ contained,
3 0's in a row now, 10 months out
Incontinence gone in early December '08,
ED remains,  still taking daily viagra for penile rehab, uro said try oral meds and then trimix for sex only now, Peyronie's Disease a problem now

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