Help - i am new here.

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

plh
New Member


Date Joined Feb 2008
Total Posts : 4
   Posted 2/10/2008 11:48 AM (GMT -7)   
hi. i'm brand new to this site or anywhere really to discuss my prostate cancer and treatment with anyone that can truly understand.
i have a few questions and just want to introduce myself.
hi i'm mark.
what i've read so far, seems like you are a nice group of loving and caring guys.
i see people are putting their stats on.
is there a place to save that as part of your profile?

i'm 45 years old and had a radical prostetechemy 12/17/06.
dr herbert lapore NYU med center in New York
my PSA was 13 and gleason score 7(4+3)
but downgraded to 3+3 just before surgery.
surgery reported to go well, nerves saved.
1 year bloods at 0 psa.
slight incontinence(no pads) which i still find very annoying(especially when attempting to have sex)
and still using 100mg of viagra or .06cc trimix for ED.

after waiting for a year for function and continence to get better
so i can continue my life, try to date, etc., i realize that i bought into a hope or promise that
probably won't be my reality. still feel a bit angry and cheated. i know there's guys out there who are going through a lot worse, i feel for you all.

it's amazing to thing of myself as cancer-free and i know, intellectually that is what's important. however, i never exactly bought into the fact that i had cancer. i experienced no symptoms, no enlarged prostate, just a number of doctors saying this thing had to go and how lucky i was to have found this out so early. maybe so, sometimes it's hard to tell.

anyway that's going to be enough for now. i feel like i'm spilling a little too much for the first posting.
be well,
mark

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8122
   Posted 2/10/2008 12:20 PM (GMT -7)   
Hi Mark,
Welcome to the best place on the internet to discuss all aspects of prostate cancer with those who have lived the experience. Look at my numbers in my signature. (BTW-you can add your signature and others like you can repond better) You can see we were very close at the time of surgery. I am fortunate in that I am married, very happily, and that my foundation is a rock of love and Faith. Please don't give up hope that your side effects will improive. I have been here for over a year and have seen some great turnarounds. A positive attitude will go a long way while dealing with your situation, and I am not saying you don't have one, just reminding all of us that our situations require our patience. First good things:

1> You are cancer free.
2> You are able to have erections, albiet aided.
3> You don't wear pads, and have enough confidence to do that.
4> You are cancer free.

Did I mention that you are cancer free?

There is nothing that you can't discuss here. And there are many who will share their experiences with you. So you are very welcome to dicuss all aspects of your concerns here. We care, and will respond.

God Bless you, and hang in there.

Tony
Age 45 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007
Post-Op Pathology: Gleason 4+3=7, positive margins, Stage pT3b (Stage III)
HT began in May, '07 with Lupron and Casodex 50mg
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (1/08): <0.1
I will continue HT until May '09. 
 
Visit my Journey at:
 
STAY POSITIVE!


puget
Regular Member


Date Joined Mar 2007
Total Posts : 237
   Posted 2/10/2008 12:42 PM (GMT -7)   
plh, I know exactly how you feel. I also am still waiting for full function to return after 8 months, but so far not much without 100 mgs viagra (and that's not 100%). But Tony's right, we should always remember that we are cancer free now and be thankfrul for that. Feeling cheated and angry is also part of the reality for many of us, though. Many, many drs downplay or avoid talking about the ED side effects and in some cases really mislead us into thinking that full function will return if we're patient. A recent study reviewed in the NY Times suggests that less than half of surgery patients find that they are able to have satisfying sex without chemical assistance. I'm not saying I would have made a different choice, but I would have appreciated an truly honest assessment. My dr still hedges. He now says that notwithstanding his earlier reassurance of a 75% recovery rate (assuming bilateral nerve sparing), "things will be better with Viagra." Even now, he dodges my question of what I can expect without it.
Puget
60 years old
Dx March 2007
Pre-Surgery Gleason 3+3 = 6
Clinical Stage: T1c
Biopsy: 1 in 10 positive
Da Vinci: June 7, 2007 
Post-Surgery Gleason 3+3 = 6
   Clear at margins
First Post-PSA Sept 07 = <.01 (Hooray!!)


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1463
   Posted 2/10/2008 12:51 PM (GMT -7)   
Hey Mark,

I'm glad you found us. We can all get well togehter.

Your surgery was nearly the same time as mine. I have no continence problems and take Viagra and L-Arginine plus .02 - .04 cc Trimix for sex. I had ED and used Levitra before surgery and my goal is to get to where I don't need the Trimix. I'm almost there. Viagra and L-Arginine get me up enough for sex but its still inconsistent so I still use the Trimix.

Please stay with us and good luck...

Jim
Age 73. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Catheter out on 12/13/06.  Dry on 12/14/06.
Pathological stage: T2C N0 MX. Gleason 3+4.
PSAs from  1/3/07 - 1/17/08 0.00. 
Next PSA test on 7/17/08
"Patience is essential, attitude is everything."
 


wd40
Regular Member


Date Joined Jan 2008
Total Posts : 218
   Posted 2/10/2008 2:26 PM (GMT -7)   
I share the pain as do we all. At times I have the very same thoughts of I went in perfectly healthy and came out without cancer but not as good as before. I think betrayed is a good description. The only thing is, we were not perfectly healthy.
Just to be blunt about it, we were dying.
Now we are not.
When i think about it these blount terms I feel lucky.
I had another thought which might help too. I know you have been told your lucky which can really suck. No, you were not a lucky man, you had cancer. But you and I are, men with cancer that are lucky.
I sure hope this helps.
12/06/07 DaVinci and open prostate surgery after difficulties in breathing stopped the davinci.
Walked a lot
90% control the day the catherter removed.
pad only for a sneeze before the week was out
No pads most of the second week.

Post Edited (wd40) : 2/10/2008 2:34:51 PM (GMT-7)


Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 400
   Posted 2/10/2008 3:54 PM (GMT -7)   

Mark:

Welcome to our forum - know you will find alot of help and support.  You asked about adding your stats.  Click on "Control Panel" at top left, then click on "Edit Profile" and go to the bottom where it shows signature.   Type your stats in box and click submit, then each time you post this will appear at the end of your post.

Best wishes to you.   Dutch


Diagnosed Feb 2001  (Age 65)  Currently 72
PSA 4.8      Gleason 3+3=6      Stage   T2b
Completed Proton Therapy @ Loma Linda - Aug 2001 - No side effects.
6yr PSA - 0.19
Our responsibility now is to educate men about Pca, PSA and the importance of early detection. 
 
 
 


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 2/10/2008 4:16 PM (GMT -7)   

tongue  Hi ~Mark & Loved Ones ,

 

Welcome   to…   ~ HealingWell ~

 

and

 

A   Special   Warm Welcome  to  You !

 

Knowledge gives us POWER….  POWER takes away the fear.

 

~     ~     ~     ~     ~     ~     ~     ~     ~     ~     ~     ~     ~

 

 Click  on  link  below for important information that will help you ~ help us!!

 

Welcome New Members ~ to HealingWell

 

The information (link) listed above is to help you get around the forum! 

 

v       This is a journey best traveled with friends. 

Welcome ~ New Friend from all the members here... on HealingWell.com

 

v      IdahoSurvivor ~  Moderator for Prostate Cancer Forum

http://farm2.static.flickr.com/1160/1313099593_9f819e3ff8.jpg

 

v      bluebird ~  Moderator for Prostate Cancer Forum

http://i206.photobucket.com/albums/bb179/mamabluebird1955/mamabluebirdWelcome.jpg


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 2/10/2008 4:23 PM (GMT -7)   

cool  Hey  ~  Mark,

 Caring Enough to Share…..  

 

A   “Special”  Warm Welcome  to  You!

 

This is truly a great forum!!! ~ “You” have joined! You are now part of our forum family ~ a group of wonderful individuals who are so willing to share their journey.

 

Thank you for joining all of us on this road to HealingWell….. yeah  

 

The sharing of your journey is so important for so many (including you!)

I really like the way you introduced yourself.  And now you can get your "Signature" ready for your next posting....

 

Our Journeys ~ Good, Bad, and/or Scary ~ must be shared so we can continue to learn and move forward. 

 

You’re going to find there are a lot of loving, caring, supportive ladies here too!!!

Keeping you close in thoughts and prayers as you continue to move forward.

Stay Close ~

In New Friendship ~ Lee & Buddy


mama bluebird - Lee & Buddy… from North Carolina

 

v          We invite you to visit our personal thread:  Click Here:  “Our Journey” ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

3rd PSA 08-07-2007 Less than 0.1 Non-Detectable :)


mvesr
Veteran Member


Date Joined Apr 2007
Total Posts : 823
   Posted 2/10/2008 6:33 PM (GMT -7)   
Hi Mark and welcome to this forum. Thinking back on this thing I don't think I could not have dealt with PC if not for my friends on this forum. They are true friends in every sense of the word. They have been here for me with kind words of support and great ideas on how to deal with this. Don't be a stranger and come back often to chat and let us know how your journey progresses.

Mika
age at dx 54 now 55
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
wear one for insurance now
ED still a problem
last PSA undetectable
 


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 2/10/2008 7:08 PM (GMT -7)   
Hey Mark, We all understand you concerns and the things we have to deal with because of this ordeal. We are here for support and friendship.
Good luck with your continued healing.

KW
    43
    PSA 5.7, Biopsy 3 of 12 positive (up to 75%) all on left side of prostate, Gleason 7
    RRP on Oct. 17, - 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 Doctor 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. 4th, 2008 - Appointment with Original Dr. to discuss options and recomendation for surgical fix for incontinance.
    Feb. 22nd, 2008 - Surgery to install the AdVance Sling.
 
     


plh
New Member


Date Joined Feb 2008
Total Posts : 4
   Posted 2/10/2008 10:10 PM (GMT -7)   
wow. what a response!
thank you for all the help and kind words.
i put my stats in a signature. i hope it works.
hey jim, what's L-Arginine?

i have not taken my eye off of the big picture, that i
am cancer-free. i also know that i am truly lucky to have found it so early and been able to take quick action. no doubt.
i did read the article in the ny times. i had a small sense that the success rates were self serving in terms of what they call success. i know i would not have made a different decision about treatment. however, as i went through the process of making the most informed decision i could, it would have been nice to have more accurate information. quality of life was a very important 2nd on my priority list when choosing a doctor, which treatment and ultimately which surgical procedure to have. 2nd priority, not 1st, but still very important. i don't mean to whine, you all seem so positive. i just haven't come to terms yet. in large part, i have been waiting for function to come back and that holy grail of 1 year that my dr. held up as the the time that all will be well. now i see it more as today is today and we'll see what tomorrow brings. am i the only one that is angry and feels a great loss? is anyone else struggling emotionally?
mark
Age 45 (44 when Dx)
Pre-op PSA was 13.5
2 biopsies - 0/12 first time PSA levels continuesd to rise
- 1/12 5% on 2nd biopsy
Surgery on 12.17.06
Pre-Surgery Gleason 3+4 = 6 downgraded to 3 =3 just before surgery
Clinical Stage: 1
1 year PSA undetectable
minimal incontinence no pads
100mgs viagra or .06cc trimx nightly
non-functional w/out trimix


Tim G
Veteran Member


Date Joined Jul 2006
Total Posts : 2246
   Posted 2/10/2008 10:20 PM (GMT -7)   

Welcome, Mark.  I'm glad that you've joined us on the Prostate Cancer forum.  Initially, I had no indication that I had prostate cancer.  No symptoms, nothing palpable during DRE, PSA in normal range.  The only thing that sent me on for further evaluation was a quadrupling of my PSA in one year.  Even with that, the urologist told me that there was only a 10% to 15% chance that cancer was present when he performed the biopsy.

My urologist was upfront and honest about the side-effects of two treatments for prostate cancer, brachytherapy and surgery.  My problem was that reading about post-treatment side effects and experiencing them are two different things. When I regained continence relatively soon after surgery, I was very optimistic about ED.

At the 1 1/2 year mark post-surgery, I still require assistance (I use injections) in order to continue to consummate my marriage. But we're hanging in there, and continue to hope to be able to function sexually for a long time, assisted or not.

I look forward to your participation here.  Take care and hang in there...Tim 

 


Age 59 PSA 2.6 PSA velocity quadrupled in 1 yr 
1 of 12 biopsy cores positive (5%) 
Open surgery June 2006  Cancer confined to one small area of the prostate Gleason 5
Post-op PSA's non-detectable


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8122
   Posted 2/10/2008 11:29 PM (GMT -7)   
Hey Mark,
You have every right to be angry at PCa and it's nice little side effects. I can't say for sure, but I'd bet that we all have had an angry moment or period because of this disease. For me I'm mad at what this has made me have to do to myself. Surgery, Hormone therapy, and radiation were not in my lifes plans in November '06. Now I battle losing my libido because of the HT. My latest hope for a "Lupron vacation" was not in the cards. I have to wait until May '09. You started out after surgery with this issue. I started out slowly getting it back, then seeing a decline. So it's like you said. Today is Today. Mark, you are not whining in my mind. You are more than welcome to hang around and see some more of our group. We've got some more still who will check in and you can see what they have been able to do.

I am still positive in every way because I keep my faith, love, and hope in my arsonal against PCa. As for my emotions, when I get emotional I blame the Lupron. It's not always the case, but it's convenient.

Tony


Age 45 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007
Post-Op Pathology: Gleason 4+3=7, positive margins, Stage pT3b (Stage III)
HT began in May, '07 with Lupron and Casodex 50mg
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (1/08): <0.1
I will continue HT until May '09. 
 
Visit my Journey at:
 
STAY POSITIVE!

Post Edited (TC-LasVegas) : 2/10/2008 11:34:40 PM (GMT-7)


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1463
   Posted 2/11/2008 9:27 AM (GMT -7)   
Hey Mark,

L-Arginine is a supplement that promotes blood flow. You can get it at a health food store. It is useful for penile rehab. I use it and Viagra daily for that purpose.

I found that hanging around this forum helped me a lot with the anger and resentment I felt about having cancer. Also the more information I had the better I felt about my situation. The folks on this forum talk from their experience. Most doctors have not experienced their own treatments and they follow standard procedures. Cancer affects each of us in different ways, physically and emotionally. We each have to find our own way to deal with it.

Jim


Age 73. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Catheter out on 12/13/06.  Dry on 12/14/06.
Pathological stage: T2C N0 MX. Gleason 3+4.
PSAs from  1/3/07 - 1/17/08 0.00. 
Next PSA test on 7/17/08
"Patience is essential, attitude is everything."
 


Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 2/11/2008 10:49 AM (GMT -7)   
Mark,
You bring up some really valid points about your feelings. It is a perfect example of how easy it is to "know" something (like I had cancer, I am now cancer free) and "feel" something. Your feelings are very valid and must be felt and allowed to flow in order to go on. I am reminded of hearing platitudes by well-meaning people who heard that I had PCa and the feeling of anger that swept over me when they assured me I had nothing to worry about. Being told that you should just be happy that you don't have cancer anymore can feel as if your feelings of grief, anger, betrayal and envy are not what they should be. We each have our own healing journey - physical as well as emotional. The grieving process can be helped by places like this board, but even here, well-intentioned people can tell you what you should be thinking or feeling. Whatever you are feeling is ok. The grief process is different for us all. Because you are still in a dating situation in life, none of us old married guys can even pretend to know what you are going through in that arena. I can only imagine that all of the normal processes of getting to know someone are even more terrifying and emasculating when compounded with the after affects of this surgery. you have come to a good place. Vent, rage, cry, it's all ok.

I am a HUGE fan of professional help with all these feelings. It is not for kooks or nuts. Personally, I think the vast majority of people need therapy. We live in such a segmented society that the disconnection can be huge. If I could encourage you to seek out a therapist to help sort through this process, I think you will be glad you did. I have often thought that the first thing a Doctor should give you when told you have cancer is a therapist's phone number. So many people and couples are overwhelmed with this event that talking to someone would really help. I started seeing a guy almost two years ago. I was one of those guys who thought losers needed therapy. How wrong I was! I am so much healthier and grounded in every way now. There are no heroics in going through any of this alone. I have been grateful so many times that I had help in dealing with all the crap that comes up in dealing with all this.

OK, enough of my soapbox! This is a great place full of great people to help you. Welcome
Paul
47 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
 
 


plh
New Member


Date Joined Feb 2008
Total Posts : 4
   Posted 2/11/2008 10:00 PM (GMT -7)   
thanks jim. i will look into L-Arginine. sounds interesting.
paul - i'm with you about therapy, been seeing my current therapist for about a year. he has helped and so have you all.
Age 45 (44 when Dx)
Pre-op PSA was 13.5
2 biopsies - 0/12 first time PSA levels continuesd to rise
- 1/12 5% on 2nd biopsy
Surgery on 12.17.06
Pre-Surgery Gleason 3+4 = 6 downgraded to 3 =3 just before surgery
Clinical Stage: 1
1 year PSA undetectable
minimal incontinence no pads
100mgs viagra or .06cc trimx nightly
non-functional w/out trimix


Lungman
Regular Member


Date Joined Jan 2008
Total Posts : 276
   Posted 2/12/2008 3:48 PM (GMT -7)   
Hang in there, this is definitely one disease that produces various angles of concern. I had no idea I had PCa until an elevated PSA during a screening. Had DaVinci surgery on 9/5/07, catheter out 10 days later, had no problems with continence, but still have persisting problems with ED, started Levitra/Cialis when catheter was out, started bi mix last week, with promising results. Even without meds for ED, I am aware of consistent improvement with respect to ED, but only 5 mos out I am hopeful things will return to pre-op status. Do not let it become a mental struggle, you have won the round, focus on the rest of the fight.

bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 3/4/2008 6:51 PM (GMT -7)   
Hey ~ Mark,
Don't forget to stay close!
This thread is a nice beginning to a journey shared...
Keeping you close in thoughts and prayers as we all move forward.
In Friendship ~ Lee & Buddy
New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, December 12, 2017 3:29 AM (GMT -7)
There are a total of 2,904,304 posts in 318,743 threads.
View Active Threads


Who's Online
This forum has 158131 registered members. Please welcome our newest member, suzen.
216 Guest(s), 1 Registered Member(s) are currently online.  Details
bluelyme