Here We Go...Primary Treatment Failure

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JoeyG
Regular Member


Date Joined Jul 2009
Total Posts : 162
   Posted 3/4/2010 7:11 AM (GMT -6)   
Hi,
 
I haven't posted much lately but come on here daily.  I got my six month psa in February and it doubled from 0.7 to 1.5. Of course, many feelings came over me when I opened the envelope, including the thought "this can't be right, I want to get another test." Well, when I got my senses together, I called my uro and we are set to do a re-biopsy on March 16 and I guess the bone scans will be arranged subsequently. My uro believes that since my psa was under control (increasing only slightly from its nadir) for three years after cryo, that he may find cancer either where the prostate gland is or in the seminical vesicles. I've been warned that in this biopsy the doctor will clip more than twelve specimans.
 
Ok, I'm not as confident, so if the doctor finds cancer in the prostate area and my scans are clean, I will be rejoicing in the streets. However, in the liklier case where the cancer is systemic, I am all over the place on what I would like to do.
 
My uro, whose primary focus is prostate cancer, is one of the top cryosurgeons in the U.S. I don't want to assume him out just yet if I go beyond the initial treatments to drug therapy. If and when, I will see how innovative he is because if I have to go on drugs, I want to use DES. I am still very active and I do not want to take a drug that will make my bones weakened, live with dozens of hot flashes daily, lose my memory and make me cry. I know DES isn't perfect but with proper monitoring and a lower dosage than was given 30 years ago, it is BETTER than Lupron. 
 
I will  keep updating here. Its been difficult to get back on as there is so much going through my head right now.
 
Joey
 
Age -57; Diagnosed 10/05 PSA 13.4 GS 9 Organ confined (T2B)
Cryoablation 4/06 Allegheny Hosp-Dr Ralph Miller (Cohen/Miller)
Post Cryo Nadir 8/06 0.2
Rising steadily to 0.7 4/09 :-(
Steady at 0.7 (7/09) (Pomegranate???)
Looking to take next steps soon
Hoping to qualify for salvage cryo or radiation


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 3/4/2010 7:18 AM (GMT -6)   
Aw Joey...sorry to hear about your current situation. Take heart though - there is much that can be done.

Hope you stay with us and keep us posted - we're all here for you.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (single small EPE in posterior left). Perineural tumor infiltration present. Apex margin, bladder neck and SV negative. Final Gleason 3+4. PSA: 0.0 til July 2009. August 2009- 0.1, September 0.3, October back to 0.0, December 0.0. Thank you God!


skeener
Regular Member


Date Joined Dec 2009
Total Posts : 214
   Posted 3/4/2010 7:57 AM (GMT -6)   

Joey - So sorry to read your post that you are having a very tough time.  Hang in there and please keep posting to keep us up to date on how you are doing.

Skeener


Age:  63 
Biopsy: May 09 showed 2 of 12 cores positive for prostate cancer -- 1 at 5% and 1 at 25%.  Cancer indicated as non aggressive.  Gleason Score: 3+3.
RRP on Oct 23/09 in London, Ontario.  Excellent surgeon. 
7 Weeks Post Op -  The fears I had about bad things about the operation and recovery did not materialise except of course ED!!.  Otherwise, everything went very smoothly.  Incontinence not a problem.  Wear a pad when out just in case. Pain was never a problem.
Pathology:  Unremarkable 
First followup PSA and Visit: Feb 11/10 - 0.0.
 
Next PSA May
Next doctor's visit in 6 months      


RT
New Member


Date Joined Mar 2010
Total Posts : 3
   Posted 3/4/2010 8:30 AM (GMT -6)   
Joey read about this journal article on DES (good information, good news on using it):
Correct does not ruin bones, memory and no hot flashes and other side effects as on Lupron and such. Read the whole Journal of Urology Article it is quite a piece and makes a reasonable case for it as a choice for patients.

http://ffyates.com/prostate/des.pdf

Post Edited (RT) : 3/4/2010 7:01:02 AM (GMT-7)


60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2243
   Posted 3/4/2010 9:48 AM (GMT -6)   
Joey,
Thanks for posting, although I know you would have rather share something more positive. There are choices for you and it sounds like you know what you want to do and I support you fully. Please keep us posted on down the road and know that we are thinking of you.
Michael
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
Margin slightly involved
2 pads per day, 1 depends but getting better,
8/5 1 depend at night only, now none
 started ED tx 7/17, slow go
Post op dx of neuropathy
3 months psa.01, 6 month psa.4, 6 1/2 month psa.5
Starting IMRT on 1/18/10
Great family and friends
Michael


MaxBuck
Regular Member


Date Joined Jan 2010
Total Posts : 75
   Posted 3/4/2010 10:01 AM (GMT -6)   
Joey:

Best wishes, good man. Please keep us posted on how you're doing, and on what treatment regimen you elect.
Dx at age 56: Oct 09; PSA 5.8, followed up by 9.9 two weeks later (reproducibility of test - ?)
Biopsy ind cancer in 8/12 cores: Gleason 8 (4+4)
open radical retropubic prostatectomy Dec 4 09
Post-op pathology: 56 g weight, cancer in 21%, Gleason 7 (4+3, tert 5); margins clear, no lymph node involvement (0/9), perineural invasion present, T2c N0Mx (but showed clear from distant metastasis in pre-op bone scan and CT scan)
Continence data: essentially no incontinence 9 weeks post-op
ED pretty complete: some erection possible but current non-functional


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 3/4/2010 10:05 AM (GMT -6)   
Joey, that was a tough post to read. Truly sorry you are in this situation. There are still many options for you, the re-test is a good first step, and the scans can give some peace of mind. We are here for you, as much as ever. Know it will be hard, but please keep us well posted of what is going on.

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, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12
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 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, Caths #13 & #14 same time


JB71
Regular Member


Date Joined Nov 2009
Total Posts : 206
   Posted 3/4/2010 12:57 PM (GMT -6)   
RT, that is great info on DES but the article is 6 years old. Surely we can find something more current because these Lupron shots are driving me nuts with the hot flashes.

Jerry.
.
Age, only 71.
 
July 2009, PSA 9.1, free ratio 0.16
September GLEASON 4+4=8, T2A
Prostate 44cc.
 
Calcium: 2.46  (range: 2.20 - 2.65 mmol/L)
25 Hydroxy Vitamin D: 102 (range: sufficiency:
76 - 250 nmol/L)
 
Bone Scan: Negative
CT Scan scheduled for Dec. 1st. Negative.
 
Started Casodex 50mg. on Nov. 6, first pill of 30.
Got Lupron 22.5mg ( 90 day ) on  November 19.
 
No real side effects as of Dec. 15 except dry skin and hair but getting quite 'porky' in the belt area even though now I go to the gym, three times a week. Also I dont have a need to shave anymore so now I can save my 'shaving' allowance and direct it to my stash of Depends !
 
Christmas Day got my first hot flashes. Thanks Santa!
 
Open surgery scheduled for Jan. 22 by Dr. J. Chen
 
Open surgery done on Jan. 20th. by Dr. J. Chin at London's University Hospital.
 
Cath removel scheduled for Feb. 8th. Yes, I know,
that will be 19 days. Dr. is out of country until then.
====================================
Pathology Report:
 
Gleason Score: cannot be determined due to hormone therapy effects. ???????
 
Extraprostatic Extension:
present, left radial, multifocal
present, left basal, multifocal
 
Resection Margins:
Apical: involved by invasive carcinoma, multifocal
Bladder Neck: involved by invasive carcinoma, unifocal on left side.Other: non-tumoural prostatic present at resection margin.
 
Perineural Invasion: present.
Seminal Vesicle Invasion: absent
Lymphovascular Invasion: absent
Lymph Node Status: no malignancy in regional lymph nodes
 
Additional path. findings:
high grade prostatic intraepithelial neoplasia
 
Pathology Stage: yp T3a NO MX
==================================
Radialogist appointment was on Friday Feb. 26 with Dr. Glenn Bauman in London.
 
Got another Lupron 90 day shot today and he wants to start IMRT soon. CT Scan plus measure scheduled in about 3 weeks. ( march 20)
 
First PSA test since surgery on March 25th.
 
Next appointment with the surgery Doc is April 13.
 
.


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 3/4/2010 1:33 PM (GMT -6)   
Joey, not much I can add to the others, but I will keep you in my prayers and wish the very best for you, brother..
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP 110gms.- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
32 mts: PSA's: .04 each test since surgery, ED Continues-Bimix .3ml PRN or Trimix .15ml PRN


JoeyG
Regular Member


Date Joined Jul 2009
Total Posts : 162
   Posted 3/4/2010 3:17 PM (GMT -6)   

I want to thank everyone for their well wishes and information.

I knew four years ago that it would be likely that this would be the fight of my life. The fight for all of us really started when we were first diagnosed.

As to the recomendations by the American Cancer Society, they are very dangerous.  Those men who never get tested find out that they have PCa when it is way too late to take any real action.  

Regardless of whether I qualify for any salvage treatments, I plan on being very proactive.
 
Thank you again,
 
Joey G
Age -57; Diagnosed 10/05 PSA 13.4 GS 9 Organ confined (T2B)
Cryoablation 4/06 Allegheny Hosp-Dr Ralph Miller (Cohen/Miller)
Post Cryo Nadir 8/06 0.2
Rising steadily to 0.7 4/09 :-(
Steady at 0.7 (7/09) (Pomegranate???)
Looking to take next steps soon
Hoping to qualify for salvage cryo or radiation


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 3/4/2010 3:48 PM (GMT -6)   
Joey, that is a good attitude to have about it
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, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12
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 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, Caths #13 & #14 same time


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 3/4/2010 4:40 PM (GMT -6)   
Unless they find mets, i would say you have a full range of options, including more cryo, surgery, radiation, etc.

Good luck !
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 injection
No pads, 1/1/10,  9 month PSA < .01

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