getting away helps.

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jerseycity
Regular Member


Date Joined Nov 2008
Total Posts : 123
   Posted 5/17/2009 11:36 AM (GMT -6)   
I had surgery on Oct 1st 2008. Since then I have been clear. After making this site a daily thing I decided to let it go. This is mostly in response to Purgatory post recently. If you continually be apart of something it cannot leave you mind.I found this happening about 2 months after surgery. Love the site and people. I check in once in awhile. I find it triggers fear of the unknown in me. I realize this is my issue and am not critical of anything involved with what site does. I just saying I really agree with Dave that you have to "get away." Keep helping each other and as always Carry On.

 3-17- 8 went to Bruce Springsteen concert , great time
3-18-8 routine exam
3-19 doctor called said psa was elevated
what's a psa?
referred to Uro, had several more blood tests.
PSA steady at 4.75
biopsy  June 08 , 12 cores, 4 on left confirmed , right clear
gleason 3 + 3 T1c
research time.
decieded on open RP, Head of Uro  is my Doctor
Surgery done 10-1-8 by Dr See at Frodoret Hospital in Milwaukee
Cathater out 10-13 no problems
Post op,  organ confined, gleason up to 4 + 3, all clear margins
T2c 20% volume, very good outcome I feel
Incontinent and ED.  Time will tell, was told all nerves  saved.
back to work 11-5-8.
 
Rich man in a poor mans shirt.


texican
Regular Member


Date Joined Jan 2009
Total Posts : 36
   Posted 5/17/2009 12:20 PM (GMT -6)   
I have had a similar experience. I gained a lot of knowledge here relating to my surgery, catheters, pads, ED drugs, etc. Thank you all for that.

When I finished with the pads and got my first 0 (hopefully many more to come), I continued to look at this site more than once a day. I get off on all sorts of side issues that don't even apply to my situation such as brachytherapy which doesn't apply since I no longer have a prostate to embed the seeds in. All this data are very interesting and helpful to many but since I find myself looking at it almost all the time, it is time for me to resolve to stay away for a while.


John
Dx December 22, 2008
Age 69
PSA 1998 5.2, 2000 2.5, 2003 5.4, 2004 7.4, 2005 15.9, 2006 20.5, 2007 31.5, 2008 34 and 32.9
Biopsy 1998-no cancer, 2003 - no cancer, 2006 - 12 samples, no cancer but PIN, Dec. 2008 - 12 samples, 2 positive with Gleason 4+3 = 7 on each. PIN on 3 others.
Di Vinci surgery on 2/10/2009, Austin TX
Pathology post surgery T3a, Gleason (4+3)7 with tertiary pattern 5.
NX,MX,R1, margin involvement 1-2 mm
Catheter removed on February 23.
First PSA followup on April 6, 2009 with 0.01 (lowest they can measure)
April 20 - no more pads


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 5/17/2009 1:38 PM (GMT -6)   
As we all respect each others thoughts and opinions I would like to ad a different twist. When we battle cancer regardless of the stage it is vital that we maintain some common bonds. If it is not HW then please find something else. No man is an island and I worry that when you walk away from your support system that loves you dearly that you will be exposed to fight the emotions that this disease can trigger at anytime. Again I respect you guys for taking a break just make sure that you have the support mechanism in place that can be there 24 seven 365 days per year. We love everyone here and truly pray that each and every person on this forum receives the quality of love and care they deserve.

peace and much love
dale
My PSA at diagnosis was 16.3
age 47 (current)
My gleason score from prostate was 4+5=9 and from the lymph nodes (3 positive) was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11
PSA July 24th, 2008 is 0.04
PSA Dec 16th, 2008 is .016
PSA Mar 30th, 2009 is .02
Testosterone keeps rising, the current number is 156, up from 57 in May
T level dropped to 37 Mar 30th, 2009
cancer in 4 of 6 cores
92%
80%
37%
28%
 


Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 5/17/2009 2:39 PM (GMT -6)   
Dale
I have to agree. The balance I try to strike on a place like this is that you do not let yourself get overwhelmed or too involved in issues that can arise. Also, make sure we are not taking care of others at the expense of ourselves.

I try to find guys on here with whom I can relate, or have a special bond. Call them up. Talk on the phone. If I am close, we go out for lunch. Keep it a support system - for both good times and bad. But if the site triggers fear, anxiety, or any negative feelings at all, it's time to take a break. I can't save the world and I don't have all the answers. All I can do is help a friend by listening and understanding the fear.

To that end - I have met a good friend in my PCa support group who told me that the average man in America has one best friend. it is his college roommate and he lives 1000 miles away. We have often talked about how grateful we are that we were able to make a new friend with such a deep bond which has allowed us to discuss the most private aspects of our lives - and discover that all that embarrassment was for nothing.

Use this place to not only find PCa answers, but use to it find a friend and confidant as well. Even if it's just on the phone, you will discover it is worth the risk.
Paul
46 at Diagnosis.
Father died of Pca 4/07 at 86.
1/06 PSA 3.15
1/07 PSA 4.6 (Biopsy 3/07 just suspicious)
10/07 PSA 5.06 (Biopsy 11/07 1 of 12 with 8% involvment) (1mm)
Da Vinci surgery Jan 5, '08 at Mt. Sinai Hosp. NYC www.roboticoncology.com
Saved both nerve bundles.
Path Report: Stage T2cNxMx
-Gleason (3+3)6
-totally contained to prostate,
-10% involvement in L & R Mid lobes
PSA 0 at nine months.
Pad free on March 14 - (10 weeks.) Never a problem since.
ED - Took 100mg viagra every night. for several months
Totally usable erections at 10 weeks, which disappeared over the course of a month or two.
ED bounce is what they call it. Now, at one year, ED is fine with viagra.
One year PSA - undectable!


rob2
Veteran Member


Date Joined Apr 2008
Total Posts : 1132
   Posted 5/17/2009 6:28 PM (GMT -6)   
I have to agree with all of the posts. When I was first diagnosed with cancer, I didn't tell anyone I had cancer and spent 8+ hours a day on the internet searching any item related to pc. I concentrated on the good and the bad. I finally landed on this site and have been here for over a year. I do not go to any other pc site. don't get me wrong, I am a worrier and think about PC a lot (with or without this site). As OHIO states above, it is something I/others have to deal with. I also feel I have bonded with a lot of you over the course of the year and do want to keep up.
 
Age 49
occupation accountant
PSA increased from 2.6 to 3.5 in one year
biopsy march 2008 - cancer present gleason 7
Robotic Surgery May 9, 2008 - houston, tx
Pathology report -gleason 8, clear margins
12 month  PSA <.04 (low as the machine will go)
continent at 10 weeks (no pads!)
ED is still an issue but getting better


Ralph Alfalfa
Regular Member


Date Joined Nov 2008
Total Posts : 469
   Posted 5/17/2009 8:00 PM (GMT -6)   
Ditto, Rob
about 10 months ago I ran into a friend here in town and asked, "Howya doing?" His reply, "I,ve got prostate cancer." I said I was sorry and that was about it until 2 months later I was diagnosed. He was the first person I called. He went through the many radiation treatments and I thought that was the way I"d go until I came to this site and, with this feedback, the Doc's input, family suggestions and my own research, opted for surgery. I've spoken with my friend a few times but he doesn't want to talk about the cancer. I've suggested this site to him...perhaps he's visited. I don't know. This place can either be a heartbreaker or a complete joy. I've read some terrible stories here, but have found a lot of great information. I think I'll stay for awhile.

Bob
 AGE:57
 Dx: October,27(the day after my birthday)
 Psa 14.5
 Gleason:(4+3) 7 T1c
 Bone scan:Negative
 Cat scan: Negative
 Biopsy: 4 of 12 positive, left side, pre-cancerous on the right.
 Confined to prostate.
 DaVinci Jan. 19th, No lymph node involvement, all margins clear.
 8 week PSa <0.01
 Gleason downgraded to (3+4)7
 Fully continent...ED progressing as expected.


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 5/18/2009 10:14 AM (GMT -6)   
Great thread,
For me, I don't think I can leave. But it's not a bad thing I don't think. As some have said, I have made too many friends here and elsewhere to just go. I will be around at least for a while. I am still in the treatment phase of an advanced case and if not for myself to get information, I will be here to offer anything I can to others who have to travel this road. I certainly understand anyone who moves on. I have seen them by the hundreds at this site. And I can say with sincerity ~ good for them. It would be a happy day that we never need a site like this if it's because prostate cancer is irradicated. Until then, what a great place to be for those stricken.

I thank everyone who came here for that...

Tony
 Age 46 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 11, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 5/18/2009 10:51 AM (GMT -6)   

I agree this is a good thread. I also agree that at times one needs to take a break from PCa. I too  have found this site to be extremely helpful and find myself drawn to the stories of the members. I do not  post all that frequently as my primary treatment modality is radiation and ADT so I have little advice to give those who chose surgery. But occasionally there is someone to whom I can contribute. At least that is my hope.

Thanks to all.

Don


Diagnosed 04/10/08 Age 58 at the time
Gleason 4 + 3
DRE palpable tumor on left side
100% of 12 cores positive for PCa range 35% to 85%
Bone scan clear and chest x ray clear
CT scan shows potential lymph node involvement in pelvic region
Started Casodex on May 2 and stopped on June 1, 2008
Lupron injection on May 15 and every four months for next two years
Started IMRT/IGRT on July 10, 2008. 45 treatments scheduled
First 25 to be full pelvic for a total dose of 45 Gray to lymph nodes.
Last 20 to prostate only. Total dose to prostate 81 Gray.
Completed IMRT/IGRT 09/11/08.
PSA 02/08 21.5 at diagnosis
PSA 07/08 .82 after 8 wks of hormones
PSA 10/08 .642 one month after completion of IMRT, 6 months hormone
PSA 03/09 .38 six months post radiation and nine months into hormones 
 
 
 


divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 5/19/2009 7:52 PM (GMT -6)   
Thank you for this thread....I also have found that this site is tremendously helpful, and can be lifesaving...Thanks toTony and the other moderators...Right now, Pete is doing well, and I don't need to check in every day....But what a wonderful place when I needed it....You guys were there....I appreciate it all....I saw a quote today...."When God closes a door, He opens a window....but there can be hell in the hallway..." We are in the window now, and I hope we stay there for awhile! Diane
Husband Pete
dx Jan 2001 gleason 4 + 3 PSA 16.5
Seed implant and conformal radiation and Lupron from Jan 2001 to Jan2002
2005 Dec PSA began to rise from .5 to 8 within 6 months
Salvage surgery at MSK 9/06 Dr. Eastham
Fistula operation 2/07 MSK Dr. Wong
Many cystoscopies and ER visits with strictures
Catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/08
AUS Operation at MSK Sept 8 2008 Dr. Sandhu
Activated Oct 28th Dr. Sandhu..MSK
Some difficulty with AUS arising Nov 10 2008
Meeting with Dr. Sandhu to discuss AUS problems and new PSA test Dec 11, 2008
PSA .6 12/08
AUS improving..only 2 pads a day and one at night
Complete hip replacement surgery Dr. Waters Gainesville, FL 1/9/09
Hip replacement total success..pain gone!!
PSA .7 2/10/09


pa69
Regular Member


Date Joined Mar 2009
Total Posts : 260
   Posted 5/19/2009 8:39 PM (GMT -6)   
I've accepted the fact that PCa is a part of my life. It doesn't matter if my PSA continues to be undetectable or not. The chance that it will rise in the future always hangs over my head, but I am OK with that.

Spending time on this site has become part of my life as well. I feel the triumph and joy when I read a post where a member describes a triumph, and I feel the pain when a member is down for some reason.

Right now I feel pretty good even though I still have incontinence problems and an erection is a distant memory. I get a lot of good information from this site and try to contribute when it feels appropriate.

As long as PCa is a part of my life, so are my visits to this site.

Bob
Age 69, First ever PSA 7.8 taken June 2008, Biopsy July 2008, 10 of 12 cores positive, Gleason 3+3=6
da Vinci surgery December 10, 2008, catheter removed December 29 2008
St. Lukes Hospital, Bethlehem, Pa.
Dr. Frank Tamarkin

Prostate weight 73.0 grams, Gleason 3+3=6, stage pT3a
Tumor locations: right anterior apex, right posterior apex to mid
left anterior mid to base, left posterior apex to mid
extensive perineural invasion in right anterior apex, right and left posterior apex to mid
seminal vesicles negative

First post PSA < .1 Jan 16 2009
Second post PSA < .1 Apr 17 2009


Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4849
   Posted 5/20/2009 6:19 AM (GMT -6)   

An age old question that has plagued man since the beginning of time: “Am I normal?”

 

Having a site like this and finding others in the same boat helps answer that question. YES, I am normal and knowing it helps.

 

<<<GROUP HUG>>>


Age 54   - 5'11"   205lbs
Overall Heath Condition - Good
PSA - July 2007 & Jan 2008 -> 1.3
Biopsy - 03/04/08 -> Gleason 6 
 
06/25/08 - Da Vinci robotic laparoscopy
Catheter in for five weeks.
Dry after 3 months.
 
10/03/08 - 1st Quarter PSA -> less then .01
01/16/09 - 2nd Quarter PSA -> less then .01
xx/xx/xx   - 3rd Quater skipped
05/14/09  - 4th Quarter PSA -> less then .01
Surgeon - Keith A. Waguespack, M.D.
 


LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 5/20/2009 5:13 PM (GMT -6)   
Actually this is a fantastic thread...I know lots of folks that come here for awhile and then disappear. It often made me wonder why and it now seems pretty clear that some folks get burnt out and need a break. So hopefully sometime down the road they will be back. This site I visit nearly daily and often, although I don't post as much as my answers seem pretty much redundant to what others have already said.

But for me personally, this is a place to listen to people, relate to them in some way, and offer any support if I can. I remember quite too well the anxiety I went through in the beginning and even though I am only out from surgery less than a year, I am able to remain calm, enlightened and confident that this phase of my life is past me. It's also a great feeling to know that if by chance I need followup treatment, there are folks here that have been down that path before me and will be more than willing to jump in and help or offer advise whenever it is needed.

For those that took a break, I fully understand, but please come back sometime if nothing more than to update your signature and just to say hello and let everyone know all is well with you.
You are beating back cancer, so hold your head up with dignity
 
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral w/PNI - Gleason (3+3)6 Stage T1C
Robotic Surgery Sept 18, 2008
Pathology October 1, 2008 - Gleason 7 (3+4) Staged pT2c NO MX - Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
PSA 5 week Oct 2008 <.05
                   3 month Jan 2009 .06
                   6 month April 2009 .06

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