Tossit's Journey

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tossit
New Member


Date Joined Feb 2007
Total Posts : 7
   Posted 2/11/2007 1:37 PM (GMT -7)   
First of all, I want to thank everyone for posting here.  This provides a lot of valuable information, not only to those of us that have been through prostate cancer but to all those who are newly diagnosed with this type of cancer.  I would also like to thank bluebird for suggesting that I start my own thread. 
 
Ok, here it is...my story
 
I forgot about all the details of my ordeal until I read some of the posts here.  Then a flood of memories came back even though it has been only eight months since my prostatectomy.  So, I thought I would share the experience with anyone who would want to read about it from the eyes of a 50 year-old man.
 
Last year the company for which I work had a program that was internet based.  The goal of the program was to get employees to proactively take care of their health.  I'm sure that by doing this, they will save money in the long-run but they also gave us a monetary incentive to entice us to complete this questionaire online.  So, I did it.  It was a relatively short questionaire, about 20-25 questions and they were pretty easy to answer.  At the end of the questionaire, it said that I needed to have a physical with age and gender appropriate tests including a PSA test.  I had never heard of PSA and didn't know what that entailed but I made an appointment to get a physical.  The doctor asked me what I was there for and I took a piece of paper out of my wallet and read him what I had copied down from the website.  I asked him what a PSA test was and he said it was just a blood test.  He said there was a lot of controversy surrounding the PSA test and that just because the PSA level came back with a high level didn't mean that someone had cancer and that a low level didn't me someone didn't have cancer.  He asked if I still wanted the test and I said yes.
 
The physical proceeded and yes, I had to have a DRE (the dreaded digital rectal exam!).  He said that my prostate was of normal size.  He finished doing the exam and I got dressed and left.  A few days later, when I got home from work, there was a message on the answering machine from the doctor.  He said that I had an elevated PSA and that he was referring me to a urologist.
 
After a month of hearing nothing, I called the doctor's office to inquire what the hold-up was.  They told me that these things 'take time' but I told them that a month was more than ample time to get a referral.  I was NOT happy about that.  Still, at this point, I knew nothing.  Finally, about a week later, I got a call from the urologist office and they TOLD me when the appointment would be.  I thought that was unusual that I didn't get a choice but at least I got an appointment! 
 
I went in for the appointment and the dr came in along with an intern.  He introduced himself and the intern and told me that they would do ANOTHER digital rectal exam and another PSA test.  He said my original PSA test was 8.66 but that they liked to do another one since there are differences in readings from different labs...made sense to me.  He did the rectal exam and said that he disagreed with my primary care dr about the size of the prostate and that it was, in fact, enlarged.  Then the intern took her turn.  I didn't know I was in for two in one day!  Of course it wasn't that bad but men just don't enjoy that.  Then the urologist asked the intern something about feeling something in the prostate...I don't remember exactly what he said but she did it AGAIN!...3 in one day...that must be a record!  After it was all over, I started thinking that they have to learn somewhere and I was the lucky person to be a guinea pig that day.  He took a blood sample for the PSA test and said that he wanted to schedule a biopsy and that if the PSA test came back low, he would cancel the biopsy but if it didn't, at least it would already be scheduled..  That made a lot of sense to me.  The test came back with a 7.55 so the biopsy was on!
 
I went in for the biopsy.  That was on Monday, April 10, 2006.  I was really afraid that it was going to be awful since I had talked to someone and he told me that when he had that done it was the most painful thing he had ever gone through.  I should have never talked to him!  I went in and the technician explained EVERYTHING to me, what they would do, how I would feel and what to expect...what a great concept!  That really made me relax and not worry.  What I later found out was that the guy I had talked to had no pain-numbing medicine prior to the biopsy.  Mine didn't hurt at ALL and only lasted a few minutes. 
 
One funny thing as that the urologist brought someone in prior to the biopsy, some man that sold a piece of equipment to the dr and he was a new employee and wanted him to see what they did with this piece of equipment.  The dr asked if I minded if he watched.  I told him that if he wanted to go out to the parking lot and bring a bunch of people to watch, that I didn't care at that point.  He laughed and so did I but that's exactly how I felt...you loose all sense of modesty!
 
With the test over, he said he would call me by that Thursday with the test results (or no later than Friday).  That was on Monday, April 10, 2006.  Tuesday about 1:00pm, the urologist called me back.  I knew that couldn't be good news.  He told me over the phone that the biopsy results came back and I did have cancer.
 
That is EXACTLY the way I wanted to hear it, EXACTLY!  I was afraid that he wouldn't tell me over the phone and that I would have to make an appt to go in to discuss what they found and wouldn't tell me a thing over the phone.  It was that that minute that I knew I loved this urologist.  Of course, I did have to make an appointment but at least I knew right then that I had cancer. 
 
The other things they told me on the phone were a blur.  I think when I heard the word 'cancer' and that I had it, I didn't really hear much else.  I got off the phone and told all the people with whom I work and told my family that afternoon after I got off work.  I wanted NO secrets.  That's just the way I am.  It helps me get it out in the open and I told everyone that if they had questions to ask them and if I didn't know an answer I would find out.  I didn't want people talking behind my back and always wondering.
 
I had the appointment and the urologist told me all my options.  I had previously devoured all the information I could get a hold of from the internet and from a very good bood he gave me so I was a little bit better informed than I was prior to all of this.  I had pretty much made up my mind what treatment I thought I wanted but wanted to hear it from him just in case I didn't understand some aspect of an available treatment.  I had three pages of questions for him, typed and single-spaced.  He answered all but two questions before I could even ask them.  After he was finished, I asked him what he would do if he were me.  I really didn't expect a straight-forward answer but he said 'if I were you, without a doubt, I'd have it taken out'.  Those were his exact words.  I will never forget them.  I said 'then, let's do it'.  Of course, tears welled up in my eyes when he was explaining the prostatectomy and possible loss of urinary control.  The loss of erections, temporary or permanent, was not nearly as painful as having to wear Depends for the rest of my life!  BUT, I wanted the cancer gone and all the other stuff was just not important at that time.
 
We finished up and scheduled the surgery so it was all set!  about four days prior to the surgery the dr called me at home and left a message on my phone.  I thought 'What now?!!!'.  I called him back early the next morning and he told me that he had been studying my case and had gotten together with the surgeon that had done a hernia repair on me a couple of years earlier and that he had had more practice with a technique that he had told me about when he talked to me about my options, robotic surgery.  He had originally told me that if I wanted to have that surgery, he would send me out-of state because no one here was that experienced with robotic prostatectomies.  I wanted him to do the surgery because I trusted him.  But now he was telling me that I would make a good candidate for this type of surgery if I wanted it.  I told him I'd think about it and called him back and told him that I wanted to do it.
 
He had to reschedule the surgery and so I had to wait an additional month.  I was worried about waiting because I was afraid the cancer would spread and then be very serious.  He assured me that it is very slow growing and one month would not make a difference.  The worst part was thinking about it every waking moment. 
 
June 2nd came and I arrived at the hospital.  They wheeled me down to the OR and I asked if I could see the 'robot'.  My dr said 'sure' and they took me in to see it.  It was HUGE.  Then they put me on the operating table, the COLD operating table and put warm blankets on me.  That was the last thing I remembered.  The next thing, I was in recovery and then finally in my room. 
 
They sure don't let you rest in the hospital!  They wanted me up and out of there asap.  They told me that I would have pains in my chest and shoulders from the gas they put in to blow me up for the surgery and that they way to get that out of my system was to walk.  It didn't take long for me to understand what they were talking about and I got up just as soon as I could and walked the halls.  The first time I made only one 'round' with the help of a nurse but after that I told her I could do it myself and was making multiple circles around the floor a LOT.  Two days later they told me I could go home and so I did.  I was surprised by the lack of pain I had.  I thought I would have a lot of pain where they removed my prostate but I didn't.  I'm not saying I was without pain but I was expecting a lot worse.  I had had hernia surgery a few years prior to that and had much more pain with that than I did with the prostate surgery.
 
I went home with a catheter, not what I wanted to do but what can you do.  I got it out five days later and was worried that I would have an accident on the car seat on the way home but I didn't!  I thought it was going to hurt when they took the catheter out but it didn't!  I had gotten a supply of Depend Guards for Men and pads that I could put under me on my mattress just in case I had an accident at night.  I used those pads for about two weeks and wore the Depends during the day for a few days.  I found it interesting that I could just be sitting there on the couch and move my leg and urine would flow, not a lot but I didn't want that at all!  Or when I would stand up from a sitting position, the same thing would occur.  After a couple of weeks that all stopped and I put the pads away as well as the Depends.  I did have a few dribbles occasionally but it wasn't too bad.  I learned that the kegel exercises were VERY important and did them religiously. 
 
I went back for followup appointments several times and had lots of questions.  The dr spent as much time with me as I need and answered all my questions.  I can ask him anything without feeling embarassesed or stupid.  He has such a way about him that I feel totally comfortable.  I did have a question for him that I wasn't sure he would answer.  I thought about asking this question prior to the surgery but I was afraid that the answer would have made me choose a different option for surgery.  So I asked...'what number surgery was this for you using the robot?'.  He looked down and smiled and then looked back up at me and held up three fingers.   I was number 3!  I LOVED it!  I laughed and laughed and still chuckle when I think about that.  It was perfect for me!
 
Once I got over the incontinence (or actually a little before) I asked about erections.  The dr gave me Cialis to try.  That didn't work for me.  It gave me a bad headache and terrible leg aches for two days.  I know it works for a lot of men and I really thought Cialis was the drug I wanted, just watching the commercials...an erection when I wanted it sounded good to me but it didn't happen.  He then gave me Levitra.  That gave me a headache but no erection.  He had me stop taking those drugs and during my next appt he said it was time to try injections.  I cringed at the thought of a needle going into my penis and asked if I could wait a few months to see if either of the drugs would start working.  He said 'No, ...use it or loose it!' and said that blood flow to the penis had to take place so you don't loose the ability to have an erection.
 
He went and got the shot and I asked if it was going to hurt.  He said 'No, it won't hurt.........ME at all!'.  We both laughed.  He said there would be minimal pain and then proceeded to give me the shot.  IT WASN'T BAD AT ALL!  It shocked me but it really wasn't.  He said to massage my penis for about five minutes and he would be back in about ten minutes to check on it.  He came back in and I thought I was going to be embarassed but I wasn't and neither was he.  He checked it out and told me that it was about 70% erect and that the goal was 100%.  He told me to keep track of the amount of time it was erect and to let him know.  I called him back with my number.  It was three hours.  He said that was too long and the goal was an hour.  With subsequent visits he reduced the amount of medicine in the injection and go it down to a reasonable amount of time.  The next appt he had me practice on myself and sent me home with a vial of the medicine.  I was surprised that I could give myself a shot but you do what you have to do and it wasn't bad.  The worst thing (in anything we do) is the unknown.  We can do anything if we have to!  Since then I have gotten a lttle bit of the erection back, not much but a little so that is promising.
 
Since then, I've had two PSA tests.  The first was 0.01 and the next one was 0.00.  The cancer was all contained in the prostate (none in the surrounding tissue) and none in the lymph nodes.  And that is the most important thing...NO CANCER!
 
One thing that I can't stress enough is to share your information with everyone.  If you have sons, brothers or fathers tell them to get tested.  One of my brothers is very reluctant, still in the 'nothing can hurt me' phase of his life but I finally got him to get tested.  My dad also was tested and has prostate cancer.  I'm so glad I had this and because of my cancer, he got tested and diagnosed and diagnosed in time to treat it!  I'm so blessed to be alive and well.  When I started telling people that I had prostate cancer, men came out of the woodwork telling me that they either had or have it...it is so common and once it was 'out' they loved having someone to share their journey with.  If you have ANY questions, please ask.  I will be more than willing to share any of my experiences with anyone.  If I don't know the answers I will tell you that too.  I'm not saying that I have all the answers because I don't.  I only have my experiences and hopefully that will be of help to someone.
 
Hang in there!
 
John
 
 
 
 
 

Prostate cancer diagnosed in April, 2006 at age 50
Prostatectomy:  June 2, 2006
Method:  daVinci Robotic Retropubic Prostatectomy
PSA prior to prostatectomy:  8.66
Gleason score:  3+3=6
Cancer in biopsy:  3 of 12 samples
Leakage:  a little for the first month or so
Pads used in total:  4
Medications tried:
Cialis...that was awful for me...a two-day headache and terrible leg aches for 2 days
Levitra...a headache and flushed face
Neither produced any erection at all
Injections...my urologist mixed 3 meds, kind of like Caverject.  That worked and gave me good erections but they were painful, ached for a few hours.  The injection wasn't bad at all but the erection was painful.
Vacuum Erection Device...called the urologist today to see if he would perscribe a VED and he said he would...hope this produces good results.
But the BEST part is that I have no cancer...2 followup PSA tests...0.01 and 0.00
 
 
 
 


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 2/11/2007 2:11 PM (GMT -7)   

Hi ~ John    *Tossit  &  Loved Ones,

 

Caring Enough to Share…..

Knowledge is Power

Thank you for sharing “Your Journey”  (Knowledge)

and helping “all of us” to gain the “Power” to (take away the fear!)

 

 

           A   “Special”  Warm Welcome  to  You!

 

 

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

 

KNOWLEDGE IS POWER... and POWER conquers fear

 

 

Our thoughts and prayers are with you.

In Friendship ~ Lee & Buddy

 

“God Bless You”

 

It's a little prayer  ~  "God Bless You"

...but it means so much each day,

It means may angels guard you

and guide you on your  way.

 

 

(Direct Link ~ just click on the title below and a new window will open!  

Reminder … click on the REFRESH icon once you get there)

Helpful Hints for New Members... Hope this helps you! :) Updated 02-05-2007


mama bluebird - Lee & Buddy… from North Carolina

Link to our personal journey…>>>     Our Journey ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy with "wide excision"

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

June 29th ~ PSA Less than 0.1 Non-detectable


lawink
Veteran Member


Date Joined Oct 2006
Total Posts : 621
   Posted 2/11/2007 2:12 PM (GMT -7)   
John!
What a wonderful post! Thank you so much for sharing. We're so glad you're doing so well and helping so many people. Your doctor sounds like a "gem".
 
Have a question for you . . . . .were both nerves spared in your surgery??  This is important to us as in our case one nerve only was spared and we are always interested to see how this impacts the ED long term.
;o) Linda & Bob


Bob (60) had laproscopic prostate surgery on Sept 27, 2006 - 2/12 malignant biopsy samples - gleason 3 + 3 = 6.  Follow up PSA results and pathology results received Nov 14th are NO MORE CANCER!  Gleason changed to a 3 + 4; cancer completely confined to prostate; (even a second more agressive, previously undetected cancer)      PSA UNDETECTABLE.   Next PSA check Feb 27, 2007.
 
Bob also takes Hydroxyurea to control Polycythemia (elevated red & white cells & platelets) has secondary condition . . Myelofibrosis) -- If anyone has experience or knowledge of these, please post us.

Post Edited (lawink) : 2/11/2007 2:16:20 PM (GMT-7)


tossit
New Member


Date Joined Feb 2007
Total Posts : 7
   Posted 2/11/2007 2:15 PM (GMT -7)   
Bob and Linda,

Thanks for your kind words. and YES, my dr is the BEST! I couldn't have gotten a better doctor if I had chosen him myself. Hope you are doing well.

John
Prostate cancer diagnosed in April, 2006 at age 50
Prostatectomy:  June 2, 2006
Method:  daVinci Robotic Retropubic Prostatectomy
PSA prior to prostatectomy:  8.66
Gleason score:  3+3=6
Cancer in biopsy:  3 of 12 samples
Leakage:  a little for the first month or so
Pads used in total:  4
Medications tried:
Cialis...that was awful for me...a two-day headache and terrible leg aches for 2 days
Levitra...a headache and flushed face
Neither produced any erection at all
Injections...my urologist mixed 3 meds, kind of like Caverject.  That worked and gave me good erections but they were painful, ached for a few hours.  The injection wasn't bad at all but the erection was painful.
Vacuum Erection Device...called the urologist today to see if he would perscribe a VED and he said he would...hope this produces good results.
But the BEST part is that I have no cancer...2 followup PSA tests...0.01 and 0.00
 
 
 
 


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 5/22/2007 4:11 PM (GMT -7)   

Moved from 1st Thread dated 2-9-2007: (No Subject)

 

Hi ~ Tossit…..

 

    A   “Special”  Warm Welcome  to  You!   yeah  

 

Partial quote from tossit's 1st Thread....(No Subject)

But the BEST part is that I have no cancer...2 followup PSA tests...0.01 and 0.00 

  

This definitely warrants “2”…..

 

*&^%$#@    WOO HOO!!  (*&^%$#  undetectable!!!!!!

*&^%$#@    WOO HOO!! ’s  (*&^%$#  undetectable!!!!!!

 

Thank you for sharing your statistics with us and know that we will be in our special prayers for our forum family.  Keeping you close as you continue your healing / recovery.

 

We saw your post on “Our Journey Thread”…and wanted to welcome you….  You’ll be getting some replies soon and you will definitely appreciate the honesty that we share on this forum.

 

Take care….  In Friendship ~ Lee & Buddy


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 5/22/2007 4:16 PM (GMT -7)   

May 22nd....2007

 

Hi ~ John,

It’s been far too long since we touched base…  yeah

I just wanted to let you know we are thinking of you and hope your journey is continuing to move forward in a positive manner.

Please don’t hesitate to update us with your progress.

The forum has grown tremendously over the past year … so don’t ever hesitate to just jump right in ~ as time permits.  Touching base occasionally helps all of us!!  tongue

:-)  One year coming up on June 6th....and we will be definitely be thinking of you!  Take care and know we care.

In Friendship ~ Lee & Buddy

Post Edited (bluebird) : 9/30/2007 8:06:52 PM (GMT-6)


tossit
New Member


Date Joined Feb 2007
Total Posts : 7
   Posted 5/22/2007 6:04 PM (GMT -7)   

Just a short update...05/22/2007

I have had two more PSA tests and they have both come back with 0.00!  I haven't had great results with erections yet but that's ok.  The dr said that it could take up to two years for natural erections to return.  I'm hopeful but not unrealistic...if they come back great and if not, that is just something I will have to live with.  I gave myself injections for a while but I didn't like the erections.  To be honest, they weren't too enjoyable; they were kind of painful and I didn't want to cause myself pain.  My dr said that with the amount of medicine I was injecting I should be able to get an erection without the medicine.  I haven't so far but I am starting to have some response. My dr prescribed a VED (vacuum erection device) and that is working.  Of course, it isn't as good as a natural erection but it is better than none at all.  The important thing is to keep the blood flowing.  That should help the healing process, so they say.

My dr has also given my Viagra to try.  I haven't used it yet but will eventually.

Since all of this happened to me, my dad had his PSA checked and it was elevated.  He had a biopsy and found that he had prostate cancer too.  His dr said that because he was over 70 yrs old that the best treatment for him would be radiation.  He has since started and completed his radiation and says that the only side-effect is that he is tired...that, and some hot flashes from the hormone shot he received prior to his radiation treatments.  I hope both will go away and that his cancer is gone.  He goes back in a couple of weeks for his first followup PSA test.  I'm praying that he has great results as I did.

Thanks for reading this and thanks for all the posts.  Remember, if you have questions, ASK!  If I don't know, someone will know and most men I have talked to don't mind sharing their thoughts and experiences about prostate cancer.  We are all in this together!

John

 

 


Prostate cancer diagnosed in April, 2006 at age 50
Prostatectomy:  June 2, 2006
Method:  daVinci Robotic Retropubic Prostatectomy
PSA prior to prostatectomy:  8.66
Gleason score:  3+3=6
Cancer in biopsy:  3 of 12 samples
Leakage:  a little for the first month or so
Pads used in total:  4
Medications tried:
Cialis...that was awful for me...a two-day headache and terrible leg aches for 2 days
Levitra...a headache and flushed face
Neither produced any erection at all
Injections...my urologist mixed 3 meds, kind of like Caverject.  That worked and gave me good erections but they were painful, ached for a few hours.  The injection wasn't bad at all but the erection was painful.
Vacuum Erection Device...called the urologist today to see if he would perscribe a VED and he said he would...hope this produces good results.
But the BEST part is that I have no cancer...2 followup PSA tests...0.01 and 0.00
 
 
 
 


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 5/22/2007 6:21 PM (GMT -7)   

Hey ~ John,

Nice quick reply…update!!!  I was thrilled to see you sign-on!!!

Yep ~ you stayed away too long!! Wonderful news that your dad is doing so well.  My boss is now 75 and had radiation seeds back 5 years ago and is doing great.  I wish your dad a wonderful recovery.  Please send special hugs to him.  I wish you had shared early…. But we all have to travel this road the best way we know how.  Just knowing we care has to make a difference.  Continue with you positive attitude… and moving forward!! :-)   When is your next PSA?

In Friendship ~ Lee & Buddy


PianoMan
Regular Member


Date Joined Feb 2007
Total Posts : 365
   Posted 5/22/2007 9:38 PM (GMT -7)   
Hi John: WOW -- I don't know how I missed your original posts but your story and mine are so similar. It was a pleasure to read it tonight.
As you know, sometimes, we can feel alone in this situation.
Thanks!
Tom

54 years old

PSA = First ever was 9.8 in late Oct. ‘06, two weeks later, 10.1

DRE: Negative

Biopsy results 11/22/06 (6 out of 8 cores positive), both lobes, Gleason 3+3 = 6

Da Vinci Robotic RP surgery, City of Hope, Jan 12, 2007

Post surgery pathology – Organ confined, Gleason still 6, margins clear.

First post-surgery PSA -- Undetectable, 2/20/07


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 9/30/2007 7:05 PM (GMT -7)   
Hey ~ John,
Just a little note to say "Hi"... As time permits it would be great to hear from you!
Continuing to keep you close ~ as we all move forward...
In 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 :)


Hagrid
Regular Member


Date Joined Sep 2007
Total Posts : 60
   Posted 9/30/2007 7:28 PM (GMT -7)   
Read your post John. Didn't see how long ago itwas written until I had read it all.

Great post. Well written. Glad to see you feel blessed. Lots of folks are surprised when I say that. Guess you have to live it to understand.

Hope you are doing find. Give us an update.
Age: 57 (49 when diagnosed)
PSA 100+ 3/1999
Biopsy -positive, both nodes 03/1999
Bone Scan and CAT scan negative 4/1999
Radical prostatectomy and bladder neck removed 04/19/1999
HT - 05/1999 (Lupron every 3 months for 9 months)
RT - 6/1999
PSA 0.0-0.2 until 2001
Casodex 150mg 2001 until 2006
Casodex 100mg 2006-present
PSA 0.4-0.6 2001-2007
 

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