Three years since The Call

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halbert
Veteran Member


Date Joined Dec 2014
Total Posts : 3421
   Posted 12/5/2017 6:42 AM (GMT -6)   
Today marks 3 years since I came home from work to a message on the answering machine. "This is ___ at Dr. N's office, we have your biopsy results back, please call as soon as you can."

I called, and was told I had 3 positive cores, and life changed.

End result: RALP in February (a little over 2 months later), and I hit the Trifecta. I also joined this forum, got to know some of the guys really well, have (hopefully) talked a few newbies off the ledge, and life is good. I guess my message is--there IS life after diagnosis. And after treatment.
Age at Diagnosis: 56
RALP on 2/17/15, BJC St. Louis, Dr. Figenshau
58.5g, G3+4, 20%, 4 quadrants involved
PSA 3/10/15: 0.10
5/18/15: <.04
8/24/15: <.04
11/30/15: <.04
2/29/16: <0.04
8/30/16: <0.04
2/15/17: <0.006
8/22/17: <0.006
My Story: www.healingwell.com/community/default.aspx?f=35&m=3300024

SueCAll
Regular Member


Date Joined Jan 2015
Total Posts : 267
   Posted 12/5/2017 8:55 AM (GMT -6)   
Yes, life changes, Halbert. But I, for one, am very glad you found this board. You are such an inspiration with your welcomes to the new members and your well thought out comments every time you post. Here's to a lifetime on zeroes for you! Sue

John_TX
Veteran Member


Date Joined Jan 2015
Total Posts : 1188
   Posted 12/5/2017 9:25 AM (GMT -6)   
The start of this journey is very difficult, some of the darkest days of my life and a huge strain on dear wife. I'm only couple three of years from diagnosis and the ordeal is pretty much forgotten; now I'm focused again on enjoying retired life smile
DX - 1-13-2015 (age 66) -- PSA 4.02 (9-16-2014) to 4.38 (12-5-2014)
RALP on March 2, 2015
G6 to G7(3+4) to G7(4+3)
Stage pT3aN1
10/2017 PSA < 0.1
7/31/2015 HT - six month's injection of Lupron
ART 11/2015, 33 sessions

Post Edited (John_TX) : 12/5/2017 7:28:04 AM (GMT-7)


Dogdays
Regular Member


Date Joined Jan 2017
Total Posts : 184
   Posted 12/5/2017 9:47 AM (GMT -6)   
I actually just finished reading your journal on your trip through this. Today is my one year anniversary of getting my 12.4 PSA back and call from my urologist. As you can see in my signature, our journey's have taken different treatment paths. I just finished up brachy followed by SBRT in late August. You and countless others on this board have and continue to provide support to everyone. I am no expert, but the feeling of talking someone down off the ledge, or offering personal experience hopefully helps new members. I try to do my best like you and others. It helped me immensely when I got diagnosed. Now a year out, I look forward. What was, was. What will be is still ahead of me. Keep up those fantastic numbers and the support you give to others.
Had to be tough moving from the mid-west to the Philly area, although if you're up near The Valley Forge area its nice. I'm on the other side of the bridge in Jersey. Anything outside of Philly.......sorry any of you Philly guys.........lol😋
Age at Dx. 63
PSA 1/08 1.4, 12/16 12.17, 4/17 3.8, 7/17 1.05, 10/17 <.05 (HT)
GS 9 (4+5)
CT Scan and bone scan 1/17 both negative
2/2/17 prostate MRI.
2/27/17 pelvic bone biopsy done. No mets
3/7/17 Started HT. Degarelix, 4/17 lupron (1-2 years)
7/7/17 LDR Brachy (Zelefsky MSK)
8/25/17 SHARP (SBRT) finished at MSK

ddyss
Regular Member


Date Joined Apr 2017
Total Posts : 272
   Posted 12/5/2017 10:09 AM (GMT -6)   
Halbert , congratulations! You are an inspiration to me and a lot of other relatively new folks and it motivates me to give back some knowldge as you have done !
May your trifecta be permanent !
DX@ 48 Yrs PSA 03/15 4.45 DRE: Firm Right Base
04/18 Biopsy Right: Base 4+3, Middle 3+4, Apex: HPIN
Left 6 cores : -ve
5/20 MRI: Pirads 5, ECE:+ve
RALP 05/26 Mt. Sinai Miami - Dr. A. Bhandari
Path:
Gleason downgraded to 3+4 !! Stage T2C
Prostrate Size: 49grams Tumor:20%
LN/SV/ECE: -ve PNI: +ve
Cath Removed : 6/1
Full continence: 7/4
PSA History :
7/7 <0.1
10/2 <0.006

three 5's and a jack
Regular Member


Date Joined Jul 2017
Total Posts : 429
   Posted 12/5/2017 10:28 AM (GMT -6)   
Halbert: Some anniversaries are good and some not so good. It sounds like both of those fit for you.

Be well and may we still be talking 30 years from now.

Roger
Looking for the 4th 5
69yo weight 7/1-283# on 10/17 216# projected 200# by treatment time
PSA 6.01 6/17 & 6.07 on 10/11/17 and 5.56 on 11/17/17
BX 8/04/17 DX 8/11/17 5/16 cores positive all on left
L mid/base 4/6 4+3=7 25%
L apex 1/2 3+4=7 30%
Sec opinion from UofW same GS7 but called overall 3+4=7
Markers and scans Dec 7/8 SBRT Dec 18-22 Swedish in Seattle Dr. Robert Meier

NKinney
Veteran Member


Date Joined Oct 2013
Total Posts : 1159
   Posted 12/5/2017 11:03 AM (GMT -6)   
Nobody forgets receiving the message that "you have cancer" which jolts one into an emotional roller-coaster.

It also becomes a life experience which one learns much from...looking back, I am morally stronger & more tolerant, wiser, and more loving, caring and empathetic in part due to that experience.

Post Edited (NKinney) : 12/5/2017 9:30:42 AM (GMT-7)


Mack54
Regular Member


Date Joined Mar 2016
Total Posts : 83
   Posted 12/5/2017 11:45 AM (GMT -6)   
Halbert,
Happy anniversary in the club we wished we hadn't joined. But most of all, thank you for your wisdom and help on the forum. Merry Christmas too!
Mack
Age at diagnosis 61, now 63
PSA 10/15 4.80
PSA 01/16 6.72
RALP 3/21/16
Gleason 6 upgraded to 7
PSA post op .001

InTheShop
Veteran Member


Date Joined Jan 2012
Total Posts : 8798
   Posted 12/5/2017 11:48 AM (GMT -6)   
Keep living life!

Andrew
I'll be in the shop.
Age 57, 52 at DX
PSA:
4.2 10/11, 1.9 6/12, 1.2 12/12, 1.0 5/13, .6 11/13,
.7 5/14, .5 10/14, .5 4/15, .3 10/15, .3 4/16, .4 10/16, .4 5/17, .3 10/17
G 3+4
Stage T1C
2 out of 14 cores positive
Treatment IGRT - 2/2012
My latest blog post

tennisplayer
Regular Member


Date Joined Nov 2016
Total Posts : 429
   Posted 12/5/2017 12:39 PM (GMT -6)   
Three good years after diagnosis and treatment. Happy, Happy! I'm glad you're still an active member on the forum, sharing your story and knowledge.

All the best in the coming year, and longer.
Age at diagnosis-66 Diagnosed 6/16
RALP 10/16 at U of Chicago, Dr. Shalhav. Experienced internal bleeding post op requiring transfusion of 2 units.
Pathology Gleason 3+4=7, tumor volume 15% Margins negative except for one focal margin, .1mm
pT2c,N0,MX,R1
PSA @ 6 wks <0.02;16 wks <0.02; 5/17 <0.02; 10/17 <0.02
My storywww.healingwell.com/community/default.aspx?f=35&m=3777359

Pratoman
Forum Moderator


Date Joined Nov 2012
Total Posts : 5685
   Posted 12/5/2017 1:02 PM (GMT -6)   
congratulations Hal, on 3 years of <'s. May it continue for many decades. We grew up in this club together.
Dx Age 64 Nov 2014, 4.3
BX 3 of 12 cores positive original pathologyG6, G6, G8 (3+5)
downgraded to 3+3=6 by tDr Epstein, JH
RALP with Dr Ash Tewari Jan 6, 2015
Post surgical pathology – G7 (3+4), ECE, Margins, LN, SV all negative
PSA @ 6 weeks 2/15, .<02, remained <0.02 until January 2017, .02, repeat Feb 2017, still .02. May 2017-.033, August 2017- .033 November .046
Decipher test, low risk, .37 score

Big Tasty
Regular Member


Date Joined Nov 2017
Total Posts : 45
   Posted 12/5/2017 2:02 PM (GMT -6)   
Happy for you Halbert, keep that awesome attitude and spirit for ever.

dbell
Regular Member


Date Joined Nov 2017
Total Posts : 163
   Posted 12/5/2017 2:46 PM (GMT -6)   
Great news Halbert best wishes for a great 2018 as well! Thank you for welcoming me to the club nobody wants to join! I see you and other veterans here have helped many new members! The big guy upstairs will reward for that!
G 3+3, 1 core of 12 - 35%

Paxton
Veteran Member


Date Joined Aug 2016
Total Posts : 1069
   Posted 12/6/2017 10:47 AM (GMT -6)   
Congratulations, halbert! I've followed your journey, and have been a beneficiary of your wisdom.

I wish you many, many more good years like these.
Age 68 at Dx
PSA history: 2000-2012 0.9-1.2; 06/2012 started T replacement
2013-2015 3.0-3.3 (new normal); 11/2015 4.6; 05/2016 5.7
Biopsy: 12-core biopsy 07/2016; 3 cores G3+3, 5% or less; 1 core 3+4, 15%; 1 core HGPIN; 2% of gland involved. Summary G3+4.
CyberKnife SBRT with Dr. Hirsch; start 11/15/16, finish 11/23

Redwing57
Veteran Member


Date Joined Apr 2013
Total Posts : 2449
   Posted 12/6/2017 1:47 PM (GMT -6)   
Congratulations, halbert! So glad you're doing well. I think it is important and helpful to observe these important milestones. That's such a life-changing moment, it's hard to ever forget it and I don't suppose we ever really can.

It has been a pleasure getting to know you and Mrs. halbert through the GFMPH gatherings. A very special "family"!
55@Dx 4/16/13
Bx: 6/12 pos, G9=5+4 (80%, 60%), 4+5 (2@100%, 80%, 10%), PNI+
cT3a (3T mpMRI: Bilateral EPE, NVB+, SV-, LN-)

Pre:
Date PSA fPSA
9/12 4.1 15%
3/13 5.2 12% PCA3=31

Tx:
IGRT by IMRT, 44 done 8/28/13: 50.4 Gy pelvic nodes, 79.2 Gy prostate
ADT2 3 yrs: Lupron/Casodex, ended 3/16

PSA <0.1 : 8/13 - 5/16;
steadying! - 0.2-8/16, 0.5-12/16, 0.7-3/17, 0.8-5/17, 0.8-7/17, 0.7-10/17

Almost a 10
Veteran Member


Date Joined Mar 2014
Total Posts : 925
   Posted 12/6/2017 5:23 PM (GMT -6)   
Congrats to you. Wishing you many many more years of success.
11/13 psa 240
DX 10/2013 PSA 187.5
PSA HIST 07/11,3.31;3/10,1.87,3/06,.87
Biopsy 10/28/13; 11/12 cores positive gs 9 (4+5)
BNSCN 12/09/2013 2 hot spots in spine
ADT 12/17/2013 22mg lupr, 50 mg Cas
BN biopsy 01/09/2013 neg
RALP 2/19/14 NN,LVI,Path T3BNX,MX, pros size 4.2 X 4 X 3 cm, 31 grm.Post Op PSA 3/14 .6, 6/14<.1;9/8,;.6;12/8, 1.2;3/9/15 3.9;6/2/15 23
12/14 CT SCAN; 1/15 BNSC

Jaybee&GG
Regular Member


Date Joined Jul 2016
Total Posts : 304
   Posted 12/7/2017 5:36 AM (GMT -6)   
What they all said Halbert! We are so glad you're here.
Congrats on an awesome result, and here's to many more! We are lucky to have you on the board.
All the best from down under!
Jaybee&GG
Dx May 2016 age 57. PSA 23.4
DaVinci RARP 1 July 2016
G 4(50%)+3 = 7 (Grade group 3)
Large TZ Tumour (apex to base) = 10% of prostate
pT2c N0
PNI- EPE- SVI-
Lymph invasion (x 8) not identified. No positive margins.
PSA's to June 2017 = <0.01
28 June - Aug '17 = 0.01 :-(
Nov '17 = <0.01!

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4110
   Posted 12/7/2017 7:47 AM (GMT -6)   
Halbert: I so agree with you Im 8 years out and life is good for us. Big bonus was getting to know and become friends with so many guys on this board.

Be well my friend.

Cajun Jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1% cancer core
10/08 Nerve-Sparing open radicalSurgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clea
r3 month: PSA <0.1
19th month: PSA <0.1
2 year PSA <0.1
Only issue at this time is ED but getting better

halbert
Veteran Member


Date Joined Dec 2014
Total Posts : 3421
   Posted 1/7/2018 6:53 AM (GMT -6)   
I thought this needed a bump....somewhere around the next week marks 3 years since I moved out of the consultation phase and towards a decision. For those who have read 'my story' in my sig file, thank you. To recap some of the basics....

The backstory is that my dad died of advanced metastatic PC in 2004, at the age of 78. He was originally diagnosed in the early 90's--at the beginning of the so-called PSA era. I have no information about his initial PSA, any diagnostic criteria, or anything else. He chose to be treated with whole gland cryosurgery, which was a new tool at the time. He was attracted to the research angle. Long story short, he had a number of good years after that.

In about 2002, the found spots on his ureters that they treated with external beam, then in the spring of 2004 he had a fall and the diagnosis was a cracked tailbone. We know now that the pain from that was bone mets in his lower spine. He passed in October of 2004.

At his urging, I started getting annual PSA and DRE at the age of 40. I had a string of zeros until age 55, when I got my first positive reading. I had also been taking saw palmetto for minor BPH for several years. At 55, my PSA was about 1, at 56 was about 2, at 57 was 3.3, and went to the urologist.

The first thing he told me was that saw palmetto (like finasteride) suppresses PSA about 50%, so a better PSA for me was probably around 6. With it doubling every year, and with a positive DRE, he recommended biopsy.

After it came back positive, I started my research. At the time, we lived in rural central Illinois, roughly midway between St. Louis and Indianapolis. I decided almost immediately that my treatment choices were going to be limited by time available and distance. IMRT, with it's 40 treatments, was ruled out immediately because of this. 40 trips of a 2 hour drive each way? Nope. A second immediate decision was 'nothing experimental'. I wanted a tried and true treatment, which put me in the decision mode between standard brachy and RALP.

Honestly, the idea of having an permanently implanted radiation source inside me creeped me out. Maybe I'm the only one who had that mental block, but I doubt it. Which led me towards surgery. I looked into AS--and I could have pursued it. Based on what came later, I believe I wouldn't have been on AS for long.

For my surgeon, I went with one of the most experienced RALP surgeons in the US--and one that no one outside of the midwest has ever heard of. I had the surgery on Feb 17, 2015, and came out very well on the other side. I had a post surgery pathology upgrade from localized G6 to G7 (3+4) in multiple locations in all 4 quadrants. I absolutely believe that this would have been discovered in a followup biopsy had I gone AS, so while I may have treated 'early', it was certainly not unnecessarily.

So, that's the short and sweet version. I have my 3 year follow up appointment scheduled in early March, and I have every reason to believe my next PSA will confirm me in the zero club. Life is good. All my parts work just fine, thank you very much.
Age at Diagnosis: 56
RALP on 2/17/15, BJC St. Louis, Dr. Figenshau
58.5g, G3+4, 20%, 4 quadrants involved
PSA 3/10/15: 0.10
5/18/15: <.04
8/24/15: <.04
11/30/15: <.04
2/29/16: <0.04
8/30/16: <0.04
2/15/17: <0.006
8/22/17: <0.006
My Story: www.healingwell.com/community/default.aspx?f=35&m=3300024

Redwing57
Veteran Member


Date Joined Apr 2013
Total Posts : 2449
   Posted 1/7/2018 7:34 AM (GMT -6)   
Thanks for sharing that, Halbert. Successes encourage our new people, and also people cruising by that we never meet.

One of the best parts of this crummy disease is getting to meet and know some fine folks like yourself.

All the best!
55@Dx 4/16/13
Bx: 6/12 pos, G9=5+4 (80%, 60%), 4+5 (2@100%, 80%, 10%), PNI+
cT3a (3T mpMRI: Bilateral EPE, NVB+, SV-, LN-)

Pre:
Date PSA fPSA
9/12 4.1 15%
3/13 5.2 12% PCA3=31

Tx:
IGRT by IMRT, 44 done 8/28/13: 50.4 Gy pelvic nodes, 79.2 Gy prostate
ADT2 3 yrs: Lupron/Casodex, ended 3/16

PSA <0.1 : 8/13 - 5/16;
steadying! - 0.2-8/16, 0.5-12/16, 0.7-3/17, 0.8-5/17, 0.8-7/17, 0.7-10/17

Progressing
Regular Member


Date Joined Aug 2017
Total Posts : 244
   Posted 1/7/2018 9:27 AM (GMT -6)   
Like so many, Halbert, I thank you for your empathy and wisdom. Glad all parts are working.
Age 75, excellent health except PCa
7/20/17, Biopsy, 5/12 cores PCa all right side, none left, Gleason 4+3, PNI
PSA 20.44
MRI and CT no evidence of metastasis, lymph nodes, or seminal vesicles, focal bulge
Laparoscopic surgery MSKCC 10/31/17, left nerves spared
11/9/17 catheter out, continent, pathology T3aN0, G4+3, focal EPE, negative margins
12/14-psa 0.10, redo 1/26

81GyGuy
Veteran Member


Date Joined Oct 2012
Total Posts : 2231
   Posted 1/7/2018 10:37 AM (GMT -6)   
Halbert -

Somewhere along the line I missed this thread, but let me now add my own appreciation of your valuable participation in and contributions to our forum here. And may you continue to do well!
Age: 72
Chronic prostatitis (age 60 on)
BPH w/ urinary obstruction, 6/2011
TURP, 7/2011
Ongoing high PSA, 7/2011-12/2011
Biopsy, 12/2011: positive 3/12 (90%, 70%, 5%)
Gleason 6(3+3), T1c
No mets, PCa likely still organ contained
IMRT w/ HT (Lupron), 4/2012-6/2012
PSAs (since post-IMRT): 0.1 or lower

Saipan Paradise
Veteran Member


Date Joined Sep 2017
Total Posts : 667
   Posted 1/7/2018 2:08 PM (GMT -6)   
Halbert, congratulations on your anniversary and many many thanks for all your compassionate and insightful posts. May you have a long string of zeros in your future!

NKinney
Veteran Member


Date Joined Oct 2013
Total Posts : 1159
   Posted 1/7/2018 2:45 PM (GMT -6)   
Another congratulations.

Pratoman
Forum Moderator


Date Joined Nov 2012
Total Posts : 5685
   Posted 1/7/2018 4:30 PM (GMT -6)   
Hal, it's great that you are free of any issues. You deserve it. You've given back to this forum multiple times what you've received.
Dx Age 64 Nov 2014, 4.3
BX 3 of 12 cores positive original pathologyG6, G6, G8 (3+5)
downgraded to 3+3=6 by tDr Epstein, JH
RALP with Dr Ash Tewari Jan 6, 2015
Post surgical pathology – G7 (3+4), ECE, Margins, LN, SV all negative
PSA @ 6 weeks 2/15, .<02, remained <0.02 until January 2017, .02, repeat Feb 2017, still .02. May 2017-.033, August 2017- .033 November .046
Decipher test, low risk, .37 score
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