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montee
Regular Member


Date Joined Mar 2007
Total Posts : 315
   Posted 12/14/2009 9:14 PM (GMT -6)   
It has been 3 years last Sunday since my surgery and a little over 3 years I was told that I have 5 years. My PSA was up to 0.06 as one time this year, but last report in December was back to >0.04. It is an eye opening experience to have two leaders in their field to inform you that you have 5 years to live. Below is my 1st post I made in 2007. I still sweat the 3 mos PSA, which Emory wants to have until 5 years post surgery, but I feel blessed to be where I am right now. I would not be where I am right now if not for a lot of prayers, Surgery to really find out, a great surgeon and the most understanding wife if the world. I have learned a great deal reading this forum and always suggest it to everyone who is going through any of the diseases listed at healing well. You can also add healingwell as a friend on your facebook if you happend to have one. I hope every one a Merry Christmas and a lifetime of ZEROS.


Posted 6/13/2007 6:28 AM (GMT -7) Quote This Post
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
diagnosed sept 2006 @ 54 years old, live in Georgia, gleason 3+4=7, (r) lobe only

psa 4.7 (psa rose 1 point per year for 3 years, urologist said still under 4 and no concern. If I can find out about PSA velocity, why didn't he know!)

Told not to have surgery at Dana Farber as cancer had already penetrated prostate, in seminal vesicles, would have positive margins. Would only treat with radiation and HT

RP Emory Atlanta December 2006. Path-negative margin, negative lymph nodes, negative SV, both Lobes involved, 40% gland involved
multifocal perineural invasion, Gleason 3+4=7

1st psa April 2007-<0.04, 6 mos-<0.04, 9 mos <0.04, 1yr <0.04, 21 mos <0.04, 2 yr 0.04 (rising?) 26 mos-0.05, 27 mos-0.04, 29 mos 0.06


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 12/14/2009 9:19 PM (GMT -6)   
If you only new what an encouragement a post like yours can be to guys in the various stages of PC.

Thanks so much for sharing, and Merry Christmas to you and your family !

Goodlife
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injections


O Buddy Boy
Regular Member


Date Joined Oct 2009
Total Posts : 106
   Posted 12/14/2009 9:37 PM (GMT -6)   
Thank you for sharing.

I was told 10-13 years with no treatment. Not nearly what you heard.

Our ages and numbers are similar, which makes reading your story encouraging.

OBB
55 yo
Dx:9/29/09
DRE: Susp
PSA: 3.5
Gleason: 3+4/7
6/12 Cores Positive; Sextants were 1%, 3%, 8%, 15%, 12%, 0%
RALP: 10/09/09
PATH:
Margins: Clear
Lymph Nodes: Clear
Seminal Vesicles: Clear
Gleason: No increase from biopsy 3+4/7
Some perineural and capsule invasion.
T2c,NO,MX
Incontinence: Minor. 1 light pad a day. Some days don't need it.
ED: Natural with encouragement. 20mg Cialis and pump just makes things more fun.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 12/14/2009 9:41 PM (GMT -6)   
Ron, I am in your neighboring state of SC, near Greenville.

Your PC journey is most interesting, but it looks like you are doing great with all your post surgery PSA tests. The only part I don't understand, and I admit, I don't always get the obvious, but why did 2 opinions tell you that your prognosis was only 5 years? Considering the stats you started with, that sounds a bit on the dark and pesimistic side.

More importantly, I am glad you are still doing so well.

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% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out  38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - began IMRT SRT - 39 sess/72 gys ,cath #8 33 days, Cath #9 in 35 days, 12/7/9 - Cath #10 in place


montee
Regular Member


Date Joined Mar 2007
Total Posts : 315
   Posted 12/14/2009 10:24 PM (GMT -6)   
I have no idea, everyone felt a pretty good size nodule, Dr. Sartor at Dana Farber, one of the leading medical oncologist in the world, said he felt cancer in seminal vesicles and that it had escaped the prostate. I asked the prognosis with radiation/hormone and he said 5 years. If you google him, he is now at Tulane and specializes of late stage prostate cancer and people from all over the country come to see him.

I don't remember the radiation oncologist at Dana Farber, but she also said 5 years and that would be surprised if any surgeon would touch me with what she felt.

By the time I got to Dr. Ritchie at Farber, he didn't even bother to examine me after talking with the other 2, he just told me they don't operate on people who they feel the cancer has escaped as it is just unnecessary surgery and would have to have radiation anyway.
diagnosed sept 2006 @ 54 years old, live in Georgia, gleason 3+4=7, (r) lobe only

psa 4.7 (psa rose 1 point per year for 3 years, urologist said still under 4 and no concern. If I can find out about PSA velocity, why didn't he know!)

Told not to have surgery at Dana Farber as cancer had already penetrated prostate, in seminal vesicles, would have positive margins. Would only treat with radiation and HT

RP Emory Atlanta December 2006. Path-negative margin, negative lymph nodes, negative SV, both Lobes involved, 40% gland involved
multifocal perineural invasion, Gleason 3+4=7

1st psa April 2007-<0.04, 6 mos-<0.04, 9 mos <0.04, 1yr <0.04, 21 mos <0.04, 2 yr 0.04 (rising?) 26 mos-0.05, 27 mos-0.04, 29 mos 0.06


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 12/14/2009 10:44 PM (GMT -6)   
Hi Ron,
Always good to see you. Happy year three. Me too, this week. Good to see you still doing well. And again, me too.

You can add me to your Facebook as well:

www.facebook.com/tony.crispino

Tony
Prostate Cancer Forum Co-Moderator


zachattack
Regular Member


Date Joined Dec 2009
Total Posts : 97
   Posted 12/15/2009 6:36 PM (GMT -6)   
Hi Ron,glad to hear your doing well.keep up the good work!

Zach
age 55dx 12-2008,psa at biopsy 8.6
biopsy 12/12 gleason 3+4=7
da vinci surgery 6-09 nerve sparing by DR. John W. Scott (my hero)
Hospital 3 days cath 7days still leaking from cough(bad lungs)
still have ed may be the hormones.
9-09 psa 2.2 hormone inj
10-09 nuclear bone scan no results yet I will have gold markers placed 12-29-09
start rad 1-10-10
organ confined
extracapsular seminal vesicle involvement
lymph node involvement


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2461
   Posted 12/15/2009 7:12 PM (GMT -6)   
Thank you for sharing. Stories like this gives all hope.
Age: 67 at Dx on 12/30/08
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed 2/9/09 Dr Fagin, Austin TX
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Posterior lateral lesions measuring 1.5 x 1.4 x 1.0 cm showing focal capsular penetration over a distance of 3mm.
Prostatic adenocarciroma accounts for approx. 10-20% of the hemisphere.
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx, Negative margins
seminal vesicles clean, lymph nodes: not dissected
continent after 4 months
8 weeks PSA test 4/7/09 result <0.1
5 months PSA test 7/9/09 result <0.1
8 months PSA test 10/9/09 result <0.1


mvesr
Veteran Member


Date Joined Apr 2007
Total Posts : 823
   Posted 12/15/2009 7:56 PM (GMT -6)   
Hi Ron.

My original urologist told me with a PSA of 4.3 and a gleason of 7, 3+4 and a negative exam on the prostate I should have braky and radiation. I asked him about surgery and he said the cancer had escaped the prostate. I was not happy with that so I sought a second opinion. Had open surgery at Duke and the results were negative margins and zero's for the past two and a half years. What do you think. Never doubt the power of multiple opinions. Oh yes he sent me to his buddy the radion Dr. He told me to not let anyone care me up. I didn't. I had a world class Dr who has done a lot of surgeries and is the Chief Of Urology at Duke. I find myself fortunate not to listen to the first and second opinions I got for treating this disease.

Mika
age at dx 54 now 57
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
ED is getting better
the shots work great, still can't give them to myself
two years of zero's


montee
Regular Member


Date Joined Mar 2007
Total Posts : 315
   Posted 12/15/2009 9:23 PM (GMT -6)   
Touche'. Everyone should get 2nd & 3rd opinions. Every case is different, it seems the Dr.s like to put us in categories based on numbers and if you are this number do this and another number do that. Like I said earlier, I feel blessed. because based on everything I have read, I should not be undetectable with the nodule they felt, based on statistics. Glad to see you also proved them wrong.

Ron
diagnosed sept 2006 @ 54 years old, live in Georgia, gleason 3+4=7, (r) lobe only

psa 4.7 (psa rose 1 point per year for 3 years, urologist said still under 4 and no concern. If I can find out about PSA velocity, why didn't he know!)

Told not to have surgery at Dana Farber as cancer had already penetrated prostate, in seminal vesicles, would have positive margins. Would only treat with radiation and HT

RP Emory Atlanta December 2006. Path-negative margin, negative lymph nodes, negative SV, both Lobes involved, 40% gland involved
multifocal perineural invasion, Gleason 3+4=7

1st psa April 2007-<0.04, 6 mos-<0.04, 9 mos <0.04, 1yr <0.04, 21 mos <0.04, 2 yr 0.04 (rising?) 26 mos-0.05, 27 mos-0.04, 29 mos 0.06

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