Update from a newbie

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Bassguy
Regular Member


Date Joined Mar 2010
Total Posts : 25
   Posted 4/13/2010 8:58 AM (GMT -6)   
So...
 
Since my last post two things have happened.
 
With my conflicting pathology reports (2+3=5 from uro and 3+3=6 from MSKCC) on the advice of one of the posters here (sorry I forget who), I contacted Dr. Jon Epstein at Johns Hopkins and entered their pathology 2nd opinion program for the tiebreaker pathology report.  JH confirmed the 3+3.  Darn.  I keep searching for a way to have an edge on this thing.  Turns out I've got the run of the mill PCa.
 
I also had a prostate MRI at MSKCC.  All good news: Small low grade tumor, organ confined.  I also went back to all my PSA tests since 2004 and graphed them.  That was interesting to look at.   The dip at the end is after a two week course of Cipro before my second biopsy.  Go figure.
 
So anywho...  I'm still undecided and considering finding a doctor who might support me in a period of AS.  Since I am only 50 now, it is likely that I am going to have to choose a course of treatment sooner or later.  Having a small cancer in my prostate doesn't freak me out and I would like to hang on to it as long as I can without putting myself at serious risk.
 
Interested in any and all comments!
 
Be well!  
 
 
 
 
Age: 49, 49 dx, PSA: 5.65
2nd Biopsy: 1/10 - 1 of 12 cores positive, 5% Cancer, Gleason 2+3=5 by primary care, Upgraded to 3+3=6 by MSKCC and confirmed  by Johns Hopkins
Have not decided on a course of treatment.


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 4/13/2010 9:08 AM (GMT -6)   
Obviously you have time here to consider. If you can't stand the wait, Brachy would certainly be a good choice, that let's you have your cake and eat it too. You can keep your prostate, and attack the cancer as well.

There are many that recommend surgery for 50 and less, but I don't think the guidelines are as scientific as they are logical. They just say that if your life expectancy is 30 years, then removal is the best option, which may not be true.

I think AS is certainly what I would do for some period, and get 3 month PSA's to see what it is doing.

Good luck on your journey.
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


Wigs
Regular Member


Date Joined Mar 2009
Total Posts : 89
   Posted 4/13/2010 9:28 AM (GMT -6)   
BassGuy,

You are near the age I was when I was first diagnosed, (see my signature). While I chose brachytherapy and remained cancer free for 10 years, it did come back. Because of your age, I would ask you to ask your doctor that if you choose brachytherapy, what would be your treatment options IF the cancer returns? I can tell you from personal experience that the salvage prostatectomy is a difficult surgery usually with extenuating circumstances.

Wigs
Diagnosed @ age 47 - September 1997
PSA 5 / Gleason 3+3
Seed Implant - January 1998 @ Trident Hospital, SC
PSA 2.4 - July 2007
PSA 2.7 - July 2008
PSA 3.0 - November 2008
Diagnosed @ age 57 - December 2007
Gleason 4+3
Salvage Prostatectomy & Colostomy - March 2008 @ MSKCC, NY
Suprapubic cathether installed - July 2008 @ Cleveland Clinic, OH
Urethral-Rectal Fistula Repair - August 2008 @   Cleveland Clinic, OH
PSA < .03 - Aug 2008
Penile catheter removed October 2008
Suprapubic catheter removed December 2008
Colostomy Reversal - January 2009 @ Cleveland Clinic
Urethral stricture removed - January 2009 @ Cleveland Clinic
(Total incontinence - 4 diapers & 6 - 8 pads per 24 hour period)
PSA < .03 - Jan 2009
AUS implant - May 2009 @ Cleveland Clinic
PSA < .03 - May 2009
AUS activated - July 2009
(Wearing a light pad daily.)
PSA < .03 - July 2009
Penile Implant - December 2009 @ Cleveland Clinic
PSA < .03 - December 2009
Penile Implant activated - February 2010
 
 


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4157
   Posted 4/13/2010 9:29 AM (GMT -6)   
Dear Bassguy:
 
You will undoubtedly get a variety of advice on this thread and obviously none of us are in your exact shoes.  Having said that, I can tell you without hesitation that if I was in your shoes I would make the same exact decision you are making, i.e. AS.  JohnT has posted often on this forum with facts indicating that treatment success is the same for people who have been on AS and required treatment later as compared to people who treated first without AS.  I would encourage you to go back and reveiw some of his posts on this or perhaps JT will drop in on this tread with those facts.
 
Oft quoted AS guidelines promote this approach for patients over 60 but newer thinking seems to avoid the age issue and focus on the diagnosis.  The link below takes you to a presentation by noted PCa surgeon Peter Scardion wherein he makes the case for AS rather than surgery for low risk cancers such as what yours appears to be.
 
 
I think the real keys to successful AS, IMHO, are having the right mindset (which you appear to have), the right stats (which you have) and a doctor who is experienced in working with AS patients and will work with you on the proper follow up.
 
So...count this vote as one in TOTAL SUPPORT of your decison and I wish you the best.
 
Tudpock
Age 62, Gleason 4 +3 = 7, T1C, PSA 4.2, 2 of 16 cores cancerous, 27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 12/09.  6 month PSA 1.4 and now 1 year PSA at 1.0.  My docs are "delighted"!

Red Nighthawk
Regular Member


Date Joined Oct 2009
Total Posts : 289
   Posted 4/13/2010 9:31 AM (GMT -6)   
Bassguy, I'm with goodlife on this one. If I had your situation when diagnosed, knowing what I know now, I would most certainly go AS. Look into diet changes also. That's all part of it. There are foods to avoid and foods to eat a lot of. Take it slow, enjoy your life, and continue with your research. You'll be fine.

peace,

john
Age: 62
Pre-op PSA: 4.1
Post-op pathology:
Gleason grade: 3+4=7, present in both lobes, at least 1.1 cm, and occupying less than 5% of prostate by volume. pT2c NX MX
No lymphatic/vascular invasion present.
Seminal vesicles and extraprostatic soft tissue free of tumor.
Inked margins are free of tumor.
High grade prostatic intraepithelial neoplasia is present
Robotic RP: Sept. 15th, 2009 1 day in hospital, cath out on 9th day
Post-op PSA: at 4 weeks ---> .04
three months -> .03 (the trend is my friend!)
ED: Improvement is very slow but there are positive signs. Doc has NOT put me on ED drugs yet.
One pad/day for the first six weeks. Two pairs of underpants, just to play it safe, for a few months.
Surgery: Dr. Jim Hu. Brigham & Women's Hospital, Boston


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 4/13/2010 2:14 PM (GMT -6)   
Hey maybe it was me on the pathology review, it is always a good consideration for any patient. Good luck with whatever you decide to do...nobody has a crystal ball or would know how to use or interpret that (LOL), we guys might have crystaled balls but that is different and we know how to interpret that. :-)
Youth is wasted on the Young-(W.C. Fields)


Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 4/13/2010 2:38 PM (GMT -6)   
Bassguy
It sounds like you are in the NYC area. In that case, Run to Dr. Aaron Katz at Columbia-Pres (W168th St.) His book, "Dr. Katz's Guide to Prostate Health: From Conventional to Holistic Therapies" is good. He is a great doc. I saw him a couple times. He is great with AS and has all kinds of approaches to help you. VERY nice guys.

Email me with any questions about him.
Paul
www.franktalk.org ED website for PCa guys

46 at Diagnosis.
Father died of Pca 4/07 at 86.
10/07 PSA 5.06 (Biopsy 11/07 1 of 12 with 8% involvment) (1mm)
Da Vinci surgery Jan 5, '08 at Mt. Sinai Hosp. NYC www.roboticoncology.com
Saved both nerve bundles.
Path Report: Stage T2cNxMx
-Gleason (3+3)6
Pad free on March 14 - (10 weeks.) Never a problem since.
ED - at one year, ED is fine with viagra.
Two year PSA - undetectable!


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 4/13/2010 2:41 PM (GMT -6)   
Bassguy,

I can honestly say that if I had your scores in the beginning I would not have jumped on this train without stops. I just keeping transferring from one coach to the other.

I am with the others that back you on the AS plan.

Sonny
60 years old when diagnosed
PSA 11/07 3.0
PSA 5/09 6.4
Diagnosis confirmed July 9, 2009
12 Needle Biopsy = 9 clear , 3 postive
Gleason Score (3+4) 7 in all positive cores
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

2/24/10 FIRST POST RAD PSA 1.0---CARRRP --waiting for the next test.
3/22/10 Second Post RAD PSA 1.5 Dammmmnnn stubborn son of a gun


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4229
   Posted 4/13/2010 2:58 PM (GMT -6)   
Hopkins has a great AS program. I think a Dr Ballentine runs it, but not sure. the latest studies inclusing those from Hopkins still say that only about 30% of those on AS show signs of progression and these are usually all in the early years. about another 25-30% choose to get treated without showing any progression. All data shows that cure rates for treatment for those on AS are exactly the same as if they were treated immediately.
The real risk of AS is not the progression of a G6, but the initial misidentification of a higher gleason grade. This is why an addtional biopsy within a year is necessary. You are one step ahead in having your path read by Epstien. Even if you choose to be treated in the future you have bought a few years without any QOL issues.
JT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 4/13/2010 4:12 PM (GMT -6)   
You got my support and vote for your AS situation. You sound like you did all your homework, and off to a good start.

Good luck.

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, 4/8 .04
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, 3/6 Cath #13 out - 4 days, Cath #14 out - 27 days, Cath #15 - 3/29


gibson00
Regular Member


Date Joined Nov 2009
Total Posts : 212
   Posted 4/13/2010 4:43 PM (GMT -6)   
I'm sorry for the dumb question......what is 'AS'??
Father 65 y/o at diagnosis November 2009
Gleason 9 & 10, stage 3 - seminal vesicle involvement
Two TURPs mid Nov. 2009
Foley Catheter
Casodex for last two weeks of November '09, then Lupron.
Suprapubic Catheter March 18th, but blocked right away, back to Foley...
Started IMRT March 25th, Chemo on hold due to catheter bleeding issues, etc.


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 4/13/2010 5:04 PM (GMT -6)   
AS= Active Surveillance

The concept of active surveillance, or watchful waiting, has increasingly emerged in recent years as a viable option for men who decide not to undergo immediate surgery or radiation therapy.

During active surveillance, prostate cancer is carefully monitored for signs of progression. A PSA blood test and digital rectal exam (DRE) are usually administered periodically along with a repeat biopsy of the prostate at one year and then periodically thereafter. If symptoms develop, or if tests indicate the cancer is growing, treatment might be warranted.

Definition from the Prostate Cancer Foundation website: www.pcf.org/site/c.leJRIROrEpH/b.5813295/k.FA2E/Active_Surveillance.htm
James C. Age 63
Gonna Make Myself A Better Man www.youtube.com/watch?v=a6cX61oNsRQ&feature=channel
4/07: PSA 7.6, Recheck after 4 weeks Cipro-6.7
7/07 Biopsy: 3 of 16 PCa, 5% invloved, left lobe, GS3+3=6
9/07: Nerve Sparing open RRP, 110gms, Path Report- Stg. pT2c, 10 gms., margins clear
32 Months: PSA's .04 each test since surgery, ED continues: Bimix- .3ml PRN, Trimix- .15ml PRN

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