Three Year Update for My Husband

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Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 3/18/2011 4:53 AM (GMT -6)   
Today (Friday, March 18) marks the third anniversary of my husband's prostatectomy. He sees his urologist/surgeon today for a 6 month check-up, and had his blood drawn on Tuesday for a 6 month PSA check. We got the excellent news on Wednesday that his PSA remains undetectable (our doctor uses the <0.1).

As many of you may remember, we had a bump in the road at the 17 month mark when John's PSA came back at 0.1, then 0.3 one month later. We began working on SRT, meeting with a lovely radiation oncologist and began planning for radiation. Both the urologist and rad onc wanted to have the third PSA test results before initiating treatment. In between, John had a bone scan which led to a CT scan...results were clean.

The third PSA - to confirm a recurrence - came back a few days before the initial set-up for SRT. The results showed that his PSA was back down to undetectable (<0.1)! The urologist called us at home on a Saturday to deliver this wonderful news...he wanted to check the PSA again in one month. That test also came back at undetectable, radiation treatment was deemed not necessary, and John went back on a 3 month PSA follow-up. Since that time (which was early Fall of 2009), John's PSA has stayed at <0.1.

Reading this board, it would seem that John was the exception. The urologist though said that this is more common than we're led to believe. Benign prostectic tissue often remains around the nerve bundles (in John's case, both nerve bundles were spared). Over time, this tissue can generate enough PSA to show up on a blood test. The PSA naturally dies off as does the benign tissue bringing the PSA level back to "zero." In our surgeon's mind, this is one of the reasons why he is not a fan of the so-called ultra-sensitive PSA tests. This is not a comment on the value or either assay just simply stating one doctor's opinion.

Sorry to retell this long saga but I know there are a fair number of new people here who are just beginning their journey. I share this to give them hope.

On a personal note, I extend a huge thank you (along with tons of hugs and kisses) to so many of my friends here who walked with us during our trials: Purgatory, Zufus, John T, Tony, James, Sonny, Corvetteman to name just a few.

Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4829
   Posted 3/18/2011 5:11 AM (GMT -6)   
Lovely stories like this in the morning are a great way to start a day.
 
I see a nice candlelight dinner in your future idea

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 3/18/2011 6:05 AM (GMT -6)   
Sephie, congratulations to both you and John. So very happy to read your post this morning.

It is been a long time since we last talked and that is totally my fault. Just been away from the board for a while and taking that much needed break from all things PCa.

Thank you for the kind words. I have truly enjoyed your support over the last 18 months since I first was diagnosed and came here to HW looking for answers and found tremendous support.

Bless you and John and may you guys continue to pull zeros for many years to come.

Sonny
60 years old - PSA 11/07 3.0 PSA 5/09 6.4
da Vinci 9/17/09
Post Surgery Pathology: GS 4+3=7
Stage: T3a
Tumor Volume 12.5% positive margin, extra-prostatic extension
30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
IMRT completed 1/15/10 35 treatments- 70Gy
2/23/10 Post IMRT PSA 1.0
3/22/10 PSA 1.5
4/19/10 PSA 1.2
5/22/10 PSA 1.3
8/9/10 Radiation for MET
9/7/10 PSA 2.2
1/5/11 PSA 3.9
3/7/11 PSA 4.2

NEIrish
Regular Member


Date Joined Aug 2010
Total Posts : 245
   Posted 3/18/2011 6:43 AM (GMT -6)   
Love hearing the good news, and especially love it that you're couching it with concern and comfort for others walking in PCa shoes.  Wishing you many more happy, healthy years together!

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4106
   Posted 3/18/2011 6:52 AM (GMT -6)   
Stephie, Just want you to know that we will raise a glass to the two of you at the GFMPH which is a month from now. Sure wish you guys could be here.

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

Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 3/18/2011 8:02 AM (GMT -6)   
Congratulations!

Your husband's PSA experience is an important "lesson learned" for others to note. Thanks for providing the details.

best wishes...

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 3/18/2011 8:08 AM (GMT -6)   
Sephie,

Major hugs an kisses to you and John. He got exactly what I was hoping. It's wonderful news to wake up to this morning. I am sure you can both relax still another notch at this point.

Your kindness to me has always been well noted and appreicated. I miss having you on here on a regular basis.

My very best to both of you.

David in SC still hoping to visit you all in NYC
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 2/11 1.24
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10,

Julietinthewoods
Regular Member


Date Joined Sep 2010
Total Posts : 309
   Posted 3/18/2011 8:17 AM (GMT -6)   
Since I'm relatively new here, I am glad to read your husband's whole story. You guys must be so, so relieved! Hope others are encouraged, and thanks for sharing your good news!

Juliet

pattersson
Regular Member


Date Joined Apr 2010
Total Posts : 97
   Posted 3/18/2011 12:22 PM (GMT -6)   
I heard about Sephies' 'strange' PSA results on an other forum when I was having my own PSA rise. Happily, my developments have been similar to his so far. Hearing about Sephie has helped me to cope with my own situation. yeah
Radical prostactemy 10/2006 @42, PSA 3.9, Gleason 3+4
PSA <0.2 2006-2009

PSA 0.14 01/2010
0.07 05/2010
0.06 10/2010

Carlos
Regular Member


Date Joined Nov 2009
Total Posts : 486
   Posted 3/18/2011 2:18 PM (GMT -6)   
Sephie, Congratulations - three years is a great milestone.  I envy your calm cool decision making dealing with your husbands rising PSA.  I thought about your circumstances many times while I was making my own decision.  Good luck going forward.
 
Carlos 
Dx 2/2008, age 71, PSA 9.1, G8,T1c. daVinci surgery 5/2008, G8(5+3), pT2c. LFPF, good QOL. PSA <0.1 for 2 yrs. PSA rose to .2 at 30 months, Completed SRT 2/2011. PSA 0.1 at 3 wks post SRT.

tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2842
   Posted 3/18/2011 2:37 PM (GMT -6)   
SEPHIE & JOHN:
congrats on the zero club membership - hopefully you can take an emotional break from the testing and just live - with a life full of zero's - and of tomorrows following tomorrows...
hugs,
BRONSON
Age: 55 - gay with spouse of 14 years, Steve
location: Peterborough, Ontario, Canada
PSA: 10/06/09 - 3.86
Biopsy: 10/16/09- 6 of 12 cancerous samples, Gleason 7 (4+3)
Radical Prostatectomy: 11/18/09
Pathology: pT3a -Gleason 7 -extraprostatic extension -perineural invasion -prostate weight -34.1 gm
PSA: 04/08/10 -0.05 -Zero Club
PSA: 09/23/10 -0.05 -Zero Club
PSA: 03/24/11 - TBA

Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 3/18/2011 2:54 PM (GMT -6)   
All, thanks so much for your wonderfully good wishes...believe me, I wish I had a magic wand that I could wave over all who come here to help them through their fears and worries, and I wish I could hug each and everyone one of you during your trials.

Carlos, my post may sound like I was cool and calm but, believe me, I was not...I think I was more rattled by the "blip" in John's PSA 17 months after surgery than I was about the initial diagnosis. Perhaps that is because I knew so much more about this nasty disease than I did going in to the whole process. Hmmm...perhaps ignorance is bliss after all.

Pattersson, I didn't realize my husband's situation went "viral"...but I hope that his story (and mine because this is not a journey of one) has helped others facing similar situations.

Jeff, please do raise a glass (or three) for both of us...while we will not be there in person, we will be with you all in spirit.

Sonny, how wonderful to hear from you...I do hope you and your sweet Lynn are doing well. Believe me when I say you are both in my prayers regularly.

David, what can I say but thank you. You have been a rock to me and to many who visit our little corner of the world looking for hope and encouragement. I visit here more often than you know but simply don't post as often. There is such a wealth of information and comfort here from members that my two cents worth is often redundant. I have also found that PCa - dare I say it? - is no longer a primary focus in my day-to-day life. I think that's a good thing but it doesn't mean that I don't think about everyone here.

Thanks again guys and gals for your special way of caring about others.

An38
Veteran Member


Date Joined Mar 2010
Total Posts : 1148
   Posted 3/18/2011 4:30 PM (GMT -6)   
Dear Sephie,

I just saw your post - congratulations to you and John!!!
Your story teaches all of us waiting for PSA results that even when there is a rise, there is hope.
I am so pleased to hear that PCa is no longer the primary focus of your day to day life. That is where many of us aspire to be.

You were so kind and so supportive when I signed up to healing well last March, absolutely terrified about my husbands PSA numbers and the possibility he had PCa. I thank you for that and I am glad that you continue posting on this site.

Regards,
An
Husband's age: 52. Sydney Australia.
Family history: Mat. grandfather died of PC at 72. Mat. uncle died of PC at 60. He has hereditary PC.
PSA: Aug07 - 2.5|Feb08 - 1.7|Oct09 - 3.67 (free PSA 27%)|Feb10 - 4.03 (free PSA 31%) |Jun10 - 2.69. DRE normal.
Biopsy 28Apr10: negative for a diagnosis of PC however 3 focal ASAPs “atypical, suspicious but not diagnostic” for PC. Review of biopsy by experienced pathologist, 1/12 core: 10% 3+3 (left transitional), 1/12 core: ASAP (left apex)
Nerve sparing RP, 20Aug10 with Dr Stricker. Post-op path: 3+4 (ISUP 2005). Neg (margins, seminal vesicles, extraprostatic extension). Multifocal, with main involvement in the fibro-muscular zone. T2C.
Post RP PSA,
Lab 1: Sep10 – 0.02|Nov10 – 0.03|Dec10 – 0.03|Feb10 – 0.03
Lab 2: Nov 10 - 0.01|Dec10 – 0.01|Feb10 – 0.01

Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2458
   Posted 3/18/2011 9:55 PM (GMT -6)   
Sephie and John, Congratulations on an excellent PSA result. Have a drink on me.
Age: 67 at Dx on 12/30/08 PSA 3.8
2 cores out of 12 were positive Gleason (4+4)
Davinci surgery 2/9/09 Gleason 4+4 EPE,
Margins clear, nerve bundles removed
Prostate weighed 57 grams 10-20% involved
all PSA tests since (2, 5, 8, 11, 15, 18, 21 months) undetectable
Latest PSA test (2 years) <.008 ?

creed_three
Veteran Member


Date Joined Jan 2007
Total Posts : 762
   Posted 3/19/2011 1:09 PM (GMT -6)   
Sephie & John, This is great news. I well remember that "bump" at the time it happened - and the incredible path it took - and it is an amazing outcome, but also an experience which must still give you chills when you think about it. Glad you are moving on with your life, and staying well. I talked to John in the chat room one night quite a while back, thinking it was you Sephie! And he was lovely....keep vigilant,  and enjoy all the good things that come your way. Stay in touch when you can. Kind regards, Lana

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 3/19/2011 6:17 PM (GMT -6)   
We all need to hear success stories. Wishing you both many more years of success and happiness.

Goodlife

Jazzman1
Veteran Member


Date Joined Sep 2010
Total Posts : 1160
   Posted 3/19/2011 6:23 PM (GMT -6)   
Sephie,

It's great to hear that John is doing so well. Success stories like yours always make my day.

I remember how kind and supportive you were when I was facing down surgery, and it's especially gratifying to hear such good news from such nice people. May you both live long, wonderful lives.

Jonathan
Age 55
PSA: 8/09 2.69 -- 7/10 4.00 -- 8/10 4.11
--------------------------------------------------
Biopsy 8/10
Three of 14 cores positive: 10%, 60% & 80%
Stage T1C; Gleason 6
---------------------------------------------------------------
open RP at Cleveland Clinic 11/2/10
Post-surgical pathology: Gleason 7 (3+4)
Three positive margins; Stage T2c(+)
12/10 & 3/11 PSA: <.03

Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 3/20/2011 5:55 AM (GMT -6)   
Jonathan, thanks for the kind words. That's the beauty of this forum since each person goes through this disease differently.

Ed, Goodlife: yes, we are very happy and pleased with the results. When John visited with his uro/surgeon this past Friday, I asked him to tell the doctor thanks from me for doing such a good job. While John's stats going into surgery werent' bad...PSA of 6.4, Gleason 3+4, 2 out of 12 cores positive...one of those cores was very close to the edge of the prostate which had the surgeon a bit concerned. Fortunately (for us), he planned his approach to cut a wider than necessary margin in that area.

Lana, yes, my John is a sweetheart. We just celebrated our 30th anniversary in February and I truly do consider myself blessed to have him in my life. I've learned alot from him, and believe that he has made me a much better person.

An, you are more than welcome. I remember well when I first came to this forum and couldn't get the questions typed out fast enough. I would spend hours each day browsing through posts here and gleaming what I could from others experience and knowledge. What I've learned here has been invaluable.

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6945
   Posted 3/20/2011 12:01 PM (GMT -6)   
Sephie,
 
I'm happy to hear the good anniversary news.
 
My best to you -

coc
New Member


Date Joined Jul 2010
Total Posts : 3
   Posted 3/21/2011 3:11 AM (GMT -6)   
great to hear good news.can anybody tell me how long after a radical can the cancer reoccur,i was told it was only about 2years unlike breast cancer which i think can reappear years after original treatment?

Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 3/21/2011 4:50 AM (GMT -6)   
COC, thanks for the good wishes.

Don't really know the answer about PCa...as far as I know, I think that any cancer can reoccur at any time. I know that when my husband hit the two year mark after surgery, his urologist said this was an important milestone. However, PSA tests will be performed every 6 months until the fifth year, then he moves to an annual PSA check. In my mind that means that the first five years are the crucial ones in terms of recurrence, but that doesn't mean that the cancer won't rear its head again 10, 15 or 20 years later. Once you have been diagnosed with any cancer you need regular follow-ups with the doctor. I had basal cell (skin) cancer abut 6 years ago and still need a full body check every year with my dermatologist to look for signs that it has come back.

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 3/21/2011 6:58 AM (GMT -6)   
Sephie, I'm late getting to the celebration, but congrats on a big milestone on the road.
James C. Age 63
Gonna Make Myself A Better Man tinyurl.com/28e8qcg
4/07: PSA 7.6, 7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS6
9/07: Nerve Sparing open RP, Path: pT2c, 110 gms., clear except:
Probable microscopic involvement-left apical margin -GS6
3 Years: PSA's .04 each test until 04/10-.06, 09/10-.09, 12/10-.09, 02/11-.08
ED-total-Bimix 30cc

Aimzee
Veteran Member


Date Joined May 2010
Total Posts : 1404
   Posted 3/22/2011 3:16 AM (GMT -6)   
Hi Sephie!
 
I just read your thread today and am so happy to hear the good news!  Congratulations to John for reaching this milestone.  I also appreciated your support when I first arrived. 
 
My wish is for continued GOOD health for both you and John!  BTW, did you get that candlelight dinner?  Take care. 
 
Best regards,
Aimzee
Husband Ron, age 63
4/1/10 PSA 5.5 Prostate size = 50 grams
Biopsy on 4/20/10 12 samples... Adenocarcinoma: 3 positive on right side, one core left base (5% ` 0.5 mm) - two cores of left lateral mid
(20% ~ 2mm, 10%, 10% ~ 1mm) - No Perineural Invasion
Gleason 6 (3+3)
Bone Scan/CT Negative (2 lesions on liver)
8/18/10 - Da Vinci Prostatectomy
Post Op: Gleason 7 (3+4)
Negative surgical margins and lymph nodes
Both nerve bundles spared
Catheter - 13 days
ED / NO incontinence.
Went to rehab to build up Pelvic floor
Post Surgery PSA 8 weeks - .01
6 mo. PSA - .01

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4223
   Posted 3/22/2011 10:30 AM (GMT -6)   
Great news Stephie,
JT
65 years old, rising psa for 10 years from 4 to 40; 12 biopsies and MRIS all negative. Oct 2009 DXed with G6 <5%. Color Doppler biopsy found 2.5 cm G4+3. Combidex clear. Seeds and IMRT, no side affects and psa .1 at 1.5 years.

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 3/22/2011 12:00 PM (GMT -6)   
Sephie,
Good numbers. Big time congrats to you and John.

And thank you for all the love and support you have given here.

Good stuff!

Tony
Advanced Prostate Cancer at age 44 (I am 48 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
Da Vinci Surgery ~ 2/16/2007
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.
Undetectable PSA.

Blog: www.caringbridge.org/visit/tonycrispino
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