You've got 5 years!

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montee
Regular Member


Date Joined Mar 2007
Total Posts : 315
   Posted 6/13/2007 6:28 AM (GMT -7)   
Just found this site about a month ago, wish I had found it in September 06 when I was diagnosed.  Here is my long story.
 
I had my prostate checked for the last 10 years by urologist with DRE and PSA. Never new exactly what PSA was, he just said numbers were good.
 
In September 05 I had a case of prostatitus and went to local Dr. as it was bothering me enough that I didn't want to wait for a week to get in to see urologist.  He said it was firm on the right side and he gave me Cipro and since I was scheduled for my yearly appt. with urologist if 2 weeks to let him check the prostate condition.
 
The urologist did not mention the firmness so I just chalked it up to the prostatitus I had for 2 weeks, according to urologist DRE and PSA was normal.
 
In September 06 during my yearly prostate check up the urologist said he felt a nodule and the psa was 4.7 which was above the magical number of 4.
biopsy revealed what he thought, cancer on the right side, gleason 7, no perineural invasion noted.  I asked the urologist my psa the last few years, and he told me 2003-1.8, 2004-2.8, 2005-3.5, 2006-4.7, and as I have read and learned later during my research, the urologist evidently had never heard of psa velositiy as this rise over a year was a good indication of cancer. 
 
He refers all his cancer patients to Emory in Atlanta, but the soonest they could get me in was December 3rd and this was October.  I was scheduled to see Dr. Fray Marshall, head of urology and formerly of Johns Hopkins.
 
A friend of mine suggested a leading urologist in Atlanta, he is mentioned in Scardinos book and men fly in from all over the country for surgery. I saw him in 2 weeks.  After talking with my wife and I for a few min, he did an exam, after my wife came back in he told me, I don't know how to tell you this, but you are not a candidate for surgery as your cancer has escaped the capsule and I can feel the nodule and it and your prostate is very hard.  He said he would love to do surgery, that is how he makes his $$, but it would do me no good, I would have POSITIVE MARGINS and all he could do is hormone T. and radiation, he said prognosis is 5 years.  He said my urologist missed the DRE and Psa over the last 3 years as this cancer has been growing for about 3-4 years and with my rise in psa over the last 3 years a biopsy should have been done 2 years earlier
 
He said if it was him, he would get another opinion and said that if it was him he would go see a friend of his, Dr. Jerome Ritchie, head of urology,
Dana Farber Cancer institute, Havard Medical in Boston.  So we made appt and saw 3 drs, medical and radiation oncologists and Ritchie.  Radiation and and medical oncologist (Sartor) agreed with Atlanta surgeon, no surgery as it had escaped and they felt in was also in seminal vesicals, they talked to the surgeon and by the time I saw him, he didn't even bother to examine me, he said they don't do surgery on men in my condition,  Sartor said prognosis was 5 years.  Needless to say it was a long flight back to GA.
 
We saw Marshall at Emory and he agreed that it had escaped the prostate but he would do surgery.  so here was my pickle, 2 leading surgeons and one leading oncologist say no surgery and it could do more harm than good as surgeon my cut through cancer cells in removing prostate and spread it even more.
I didn't make up my mine for sure until I was on the pre-op table at Emory and had agonzized and prayed over this delimma for weeks.  My surgery was 1st scheduled for 14 February but I asked to be put on a cancellation list, well in a couple days they called and said they had 2 cancellations on December 13 becasue they didn't want to have surgery on the #13, Marshall only does 2 surgeries per day, Monday and Wednesday.
 
After surgery I waited for the final path report, had surgery on 13 December didn't get letter from Marshall until 3 January.  Don't have all the #s with me as we are now on vacation, but here is what I rembember:  NEGATIVE MARGINS,NO SEMINAL VESICLE cancer noted, gleason 3+4, cancer on both sides instead of just one as biopsy noted, 40% of gland cancerous, mulitfocal perineural invasion noted, needless to say my wife and I cried over the fact that is said negative margins.  but the perineural invasion does concern me, because if the original biopsy would have shown that then Marshall wouldn't have done the nerve sparing on the left side.
 
We still had another test to go and that was the 3 mos psa test, it came back <0.04, another relief, 6 mos psa in next week and as with most we be sweating another one, but I am satisfied so far since I was twice given 5 years.  Incontinence only lasted 2 weeks after catheter removal so I was blessed with not having to go through that. I friend of mine who is the same age as me, 55, had incontinence for 6 months. A lot of prayers on my behalf by my church and community have been heard and answered
 
 
I just pray that my urologist failure to detect and realize about psa velosity doesn't makes that 5 years come true.
 
thank you for listening
 
Ron in Georgia
 

Tamu
Veteran Member


Date Joined Oct 2006
Total Posts : 626
   Posted 6/13/2007 7:41 AM (GMT -7)   
Ron,

What a tremendous testimony! It is scary that more then one well recognized doctor told you that you only had five years and then surgery occurs and you may be cancer free. It makes me wonder how many other men may have traveled your same path and stopped with the first or second prognosis and accepted it. Your story is just another one that goes along with others shared on this forum that prove that PCa victims must take control of the treatment process and not leave it in the hands of one medical professional.

Good luck to you and I will offer of a prayer for you.

Tamu
Diagnosed 7/6/06, 1 of 10 core samples, 40%,Stage T1c, Gleason 3+3
Da Vinci on 11/01/06, Catheter out on 11/13/06
56 Years Old
Post Op Path, Gleason 3+3, Approx. 5% of prostate involved
Prostate Confined, margins clear
Undetectable PSA on 12/18/06
No more pads as of 1/13/07
Began injections in April '07


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1463
   Posted 6/13/2007 7:59 AM (GMT -7)   
Hey Ron,

Congrats on a great outcome in spite of several expert opinions that looked very gloomy. Usually the news is in the opposite direction with a good pre-op staging and a bad one post-op. What a relief you must have felt!

Please stay with us. We need all the help we can get...

Jim


Age 72. Diagnosed 11/03/06. PSA 7.05. Stage T2B Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Pathological stage: T2B. Gleason 3+4. Cancer confined to prostate.
PSA on 1/3/07 - 0.04. 
PSA on 4/4/07 - 0.00  T level - 48  Restarted T therapy.
Next PSA on 7/18/07.
 
 "I have cancer but cancer does not have me."


myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 6/13/2007 8:40 AM (GMT -7)   
Ron,

Welcome to our group - so glad you found us.

It's so good to read your wonderful news - what a road you've traveled! It shows all of us what can happen - the good and the bad and we NEED to know.
You listened to your gut and THAT is what saved you. Like we're told here - once you make your decision don't look back and be persistant.

Please keep us posted on your 6 mo. PSA - we'll be looking for you!

Bless you and your wife,

Susan
Husband Diagnosed 11/17/05 Age: 63 No Symptoms
PSA: 7.96, Positive DRE
Biopsy Right: 6 of 6 Cores Positive Biopsy Left: 1 of 6 Cores Positive
Gleason: 4+3 = 7 Stage: T2B N0 MX
2/09/06: LRP Restage: T3A NX MX
3 mo. PSA Post Surgery: 11.8, 12.9, 13.9 Bone scan, CT scan, Endorectal MRI, Chest XR - neg.
9/06/06: 6 mo. PSA: 18.8 CT shows distant lymph node involvement
Restage IV Start HT Lupron 3 mo. shots
12/06/06: PSA 0.8
03/07/07 - PSA 0.3
06/06/07 - 0.1


Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 6/13/2007 10:17 AM (GMT -7)   

Wow!

Ron, what a ride you've been on! I guess these doctors call it practice for a good reason. I'm really glad you have joined us, your story will definitly help others who come here thinking there is no hope left. Welcome and please don't be a stranger!

Your friend,

Pete 


54 years old, Surgury, Radical Prostatectomy 8/20/03, PSA 6.6, Gleason 3 + 3 = 6, Adenocarcinoma extent (moderate) Stage & Margin:T2NOMX, No Metastases, Organ Confined, bone scan: Neg. Testosterone Theropy since 12/06. I am's what I am and that's all that I am!!! 


mvesr
Veteran Member


Date Joined Apr 2007
Total Posts : 823
   Posted 6/13/2007 4:56 PM (GMT -7)   
Dear montee. Sorry you have to be hear, but we all welcome you. My first urologist told me mine had escaped the gland also because I had perinural invasion. I sought a second opinion and had open surgery and my margins were negative with no cancer anywhere else. Got my cath out yesterday and today I am still dribbling but feel it is getting better. I do have some control over the heavy stream, even now. Please tell everyone to get the best Dr. they can find.

God Bless you

Mika

Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 6/14/2007 5:15 AM (GMT -7)   
Thats the crazy part about Ron's story! He went to some of the best and the gave him the wrong info. Had he excepted there opinion, he'd be heading down hill but instead, he's climbing up on his way to a long life cancer fee! Ron, you are my hero!
Your friend,
Pete
54 years old, Surgury, Radical Prostatectomy 8/20/03, PSA 6.6, Gleason 3 + 3 = 6, Adenocarcinoma extent (moderate) Stage & Margin:T2NOMX, No Metastases, Organ Confined, bone scan: Neg. Testosterone Theropy since 12/06. I am's what I am and that's all that I am!!! 


montee
Regular Member


Date Joined Mar 2007
Total Posts : 315
   Posted 6/14/2007 6:33 AM (GMT -7)   
don't know if they gave me the wrong info, but I think that some treat us not on an individual basis, but as a group basis, depending on the partin tables and nanograms which is based on years of following cases and research.  I know the dr. in Atlanta and the 3 at Harvard all got our thier tables when I asked about prognosis and protocols of treatment.  But I chose the road less traveled according to my initial diagnosis, I wanted the cancer and gland that it was in out, if there is a snake is the house, I want him out!  I know a lot of us were concerned about ED and being only 55, I wasn't ready to be put out the pasture, but like I told Marshall, I would rather be a live steer, than a dead bull, take out what needs to be taken out to get rid of it.
 
I had a friend whose urologist told him that his gleason was 9-10, cancer escaped and not given much of a chance, he went to MD Anderson, had slides sent there, had an endorectal MRI, they downgraded to gleason 7, and said it was contained.  He had DaVinci surgery at MD Anderson, told him they think they got it all, inked the bed during surgery and was negative, final path report came back as Gleason 8, with positive margins and diagnosis was back to where it began with the local urologist.  His post op psa was .4 and then .5, he just got back from Mayo in Jacksonville after having adjuvant radiation treatments and he still has a positive attitude that we all need to have.  Needless to say he was also on a rollercoaster ride.
 
Just a side note, I live in a small town of around 6,000 and from September to January, 5 men had been diagnosed with PCa, 3 had surgery, 2 chose radiation. None of us had family histories of PCa.  Must be something in the water!
 
Just wanted to say I have gotten a lot of information, help and inspiration by reading posts on this site. I pray that we all "live long and prosper"
 
Ron


diagnosed sept 06
gleason 3+4=7, right lobe only
psa 4.7
RP Emory Atlanta December 2006
Path-negative margins, negative lymph nodes
negative seminal vesicles, multifocal perineural invasion
gleason 3+4=7
1st psa April 2007-<0.04
6mos psa due June 2007

Post Edited (montee) : 6/14/2007 8:24:28 AM (GMT-6)


spinbiscuit
Veteran Member


Date Joined Apr 2006
Total Posts : 818
   Posted 6/14/2007 4:05 PM (GMT -7)   
Hello Ron,

Your story is scary to say the least, but your determination to beat this PCa is inspirering. Others will see your courage, and it will help them to fight and beat PCa. Keep up the good work, and keep posting us on your recovery. We will pray for the other 5 men in your town too.

God bless you,

Glen
Diagnosed at age 60
PSA went from 2.2 to 3.8 in 14 months
2 of 14 cores positive at 10%
Gleason 6(3+3), negative DRE, neg. boundaries
DaVinci surgery on 02/23/06
 


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 6/15/2007 5:30 PM (GMT -7)   

Hi ~ Ron & Loved Ones

 

Caring Enough to Share….. 

 

  A   “Special”  Warm Welcome  to  You!  yeah   

 

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…..

 

KNOWLEDGE IS POWER... and POWER conquers fear

 

Keeping you Extra Close in our thoughts and prayers.

In New…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 ~ & ~ Direct Links to Important Topic Threads ~ Hope this helps you!! :) 


mama bluebird - Lee & Buddy… from North Carolina

J  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 with "wide excision"

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

2nd PSA 02-06-2007 Less than 0.1 Non-Detectable :)

 

*bluebird ~ Moderator for Prostate Cancer Forum

Please donate to help HealingWell continue to help us.... www.healingwell.com/donate


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 6/15/2007 5:42 PM (GMT -7)   

Hi ~ Ron,

 

Powerful journey… thank you so much for Sharing!!  It warms the heart knowing you found HealingWell

You sound much like me and my Buddy…..  Get that thing out!!!  I even told our urologist I’d help him if he’d go ahead and take “it” out right now…. In his office!!! On his desk… NOW!!!  Giggle~Giggle  We felt the same as you in taking anything that could be a haven for cancer cells down the road so we elected to have the “wide-excision”.  We have never looked back on our decision….   We even gave him an index card stating our request…. Because it’s not the norm!!

 

Continue to take One~Day~At~A~Time and know we are here for you!!!  And now you are here for us and all the Newbies…

Take care and we will keep you close in thoughts and prayers.

In Friendship ~ Lee & Buddy

 

bluebird ~  Moderator for Prostate Cancer Forum

Caring is Sharing ~ Please donate.... www.healingwell.com/donate


pcdave
Regular Member


Date Joined Oct 2006
Total Posts : 444
   Posted 6/16/2007 8:05 PM (GMT -7)   
Dear Ron

What a compelling story! Thank you ever so much for sharing your precarious journey with us that will hopefully continue to have a happy ending. Your story demonstrates just how difficult it is to diagnose the stage of prostate cancer prior treatment unless you elect to have surgery and get a prostate pathology report after surgery. You consulted with some of the top doctors in the country and still there were strong conflicting opinions. Thank God that you got to a surgeon who was willing to do the surgery and find out the truth. Your message here should be a wake up call to all of us--you can't leave any stone unturned in pursuing 2nd, 3rd, etc. opinions from top doctors in searching for PCa treatments which will hopefully eradicate our cancer. Many PCa patients are told there is no hope for a cure only to find that the doctors were wrong. Best of luck to you.

Dave
68, 29-core biopsy 9/27/06, PSA 7.1, Stage T1c, Gleason 7 (3+4) [less than 20% in one area],  Gleason 6 [less than 5% in two other areas], negative DRE, bone scan and Endorectal MRI. Completed 39 Proton radiation treatments 2/22/07-4/18/07.
First PSA test to be taken 7/07.

Post Edited (pcdave) : 6/16/2007 9:11:09 PM (GMT-6)


StrictlyInc
Regular Member


Date Joined Dec 2006
Total Posts : 353
   Posted 6/16/2007 9:00 PM (GMT -7)   
Amazing story, congratulations for making it through so far, hope you hang out here for the unforeseeable future!
____________________


Prostate cancer diagnosed: May 15, 2006 (age 40)
Gleason score: 3+3=6
daVinci radical prostatectomy: July 25, 2006
size of tumor: approx 1.1 inches
post-surgery Gleason score: 3+4=7; negative margins from surgery

- number of pads/day at 3 months after surgery: 3 to 5
- number of pads/day at 4 months after surgery: 1 to 2
- number of pads/day at 6 months after surgery: 0 to 1

- 1st post-surgery PSA: 0 (Nov 2006)
- 2nd post-surgery PSA: 0 (Feb 2007)
- 3rd post-surgery PSA: 0 (May 2007)

ongoing post-surgery treatment: Cialis every other day, Viagra "on-demand", ErecAid pump daily Cialis every other day, ErecAid pump twice daily (when I can manage it)

- PGE1 batting average: .364 (4 for 11)
- Bimix batting average: .500 (1 for 2)


Mike A
Regular Member


Date Joined Feb 2007
Total Posts : 213
   Posted 6/18/2007 5:01 AM (GMT -7)   
Ron,
WOW what a story, and what a testimony of faith! So glad you didn't stop with just two opinions! Glad to hear of your good post-op numbers. Keep us posted.
Best,
Mike
June 2005 - Age 53 PSA 4.8 at regular physical
October 2005 - After several rounds of anti-biotics, PSA 5.2 at Urlogist
November 2005 - Biopsy negative
July 2006 - PSA 5.9 at regular Physical
October 2006 - After several more rounds of anti-biotics PSA 8.1
November 2006 - Second biopsy - Positive
December 2006 - Gleason (3+4=7), Tumor T1c, CT Scan and Bone Scan Negative
January 2, 2007 Robotic Prostatectomy, University of Rochester Medical Center - Tumor confined but larger than thought, only one nerve able to be spared. Margins clear.
February 2007 - Three to four pads a day, no erection with viagara.
March 2007 - Down to two pads a day, had first intercourse with Erecaid pump and bands, otherwise still flat tire.
April 2007 - First Post-Surgical PSA 0.02 and a great relief! Down to one pad a day. Still unable to achive erection without pump.
May, 2007 - Still one pad a day, even try a smaller pad on occasion. Slight improvement on the ED.
"If patience is a virtue, I feel like the most virtuous guy on the planet!"


montee
Regular Member


Date Joined Mar 2007
Total Posts : 315
   Posted 6/20/2007 12:01 PM (GMT -7)   

Thanks for the welcome and comments.  Just had my 6 mos psa and it was <0.04, which I assume is pretty good. My question is since the lab report says their reference range for normal limits is 0.00-4.00, does that mean that since their test can detect down to 0, does that mean that mine at <0.04 is detecting cancer cells. 

 Just before my surgery because of low testerone levels, my psa dropped from 4.7 to 3.5 and that is with 40% gland involvement, so I am wondering if the 0.04 is more significant becasue of the low testerone level.

 Just another example that all urologist need to lower their normal range below 4.00, if my psa back in September would have been 3.5, then he wouldn't have requested a biopsy since his and the lab's normal range was 4.00

Thanks and have a good day.

Ron


diagnosed sept 06
gleason 3+4=7, right lobe only
psa 4.7
RP Emory Atlanta December 2006
Path-negative margins, negative lymph nodes
negative seminal vesicles, multifocal perineural invasion, both lobes involved
40% gland involved
gleason 3+4=7
1st psa April 2007-<0.04
 6 Mos PSA <0.04

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