Playing the waiting game . . .

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Jack Harkey
New Member


Date Joined Jul 2010
Total Posts : 2
   Posted 7/5/2010 12:45 PM (GMT -6)   
The results of my biopsy came back last week as follows:

Two of 12 cores positive, 40% cancer, PSA 5.2, T2b/T2c. I am 56 years of age and had a 5.1 PSA a year ago that was determined to be "a mistake" when the second PSA two weeks later came back at 2.3. This year's PSA and a repeat two weeks later were both 5.2. My Gleason scores are 3+3 and 3+4. My urologist has suggested the radioactive seed therapy, as according to him "the tumor is located at the front of the prostate and there is a greater possibility that cancerous cells will be left behind if the prostate is removed." I have made an appointment for a "second opinion" at UTMD Anderson Cancer Center in Houston, but will not be able to be seen until July 27 (three weeks at the time of this posting). Of course my mind is going a thousand miles per hour with thoughts like, "should I wait for three weeks?" and "should I go ahead with the treatment my urologist has suggested?"

Any input from you veterans out there will be appreciated!

Arnie
Regular Member


Date Joined Aug 2009
Total Posts : 374
   Posted 7/5/2010 1:08 PM (GMT -6)   
Hi Jack........welcome to the forum, but sorry you have to be here, as we say. I can tell you that with similar numbers, etc. i was able to postpone the date of my treatment for 5 months from time of biopsy/diagnosis, allowing me time to research, get 2nd & 3rd opinions, think things over with my wife, and then go forward. I consulted my uro/surgeon, two other uro/surgeons, a brachytherapist, a medical oncologist, and my GP. All specialists gave me the green light to take up to 6 months to decide on treatment. Most guys on here will tell you to get all the info you can regarding all treatments for which you are a candidate, and then once you decide, don't look back. With Gleason 6 & 7, I don't think that waiting until 7/27 to get an opinion from M.D. Anderson is detrimental, although your emotions will play havoc with you.  Other guys here have experience at Anderson, and when they spot your post, will probably chime in with more specific advice. We're here to support you, so ask any and all questions. We'll help you get through this journey.........
 
Arnie in DE
Age 56 (biopsy & surgery)
PSA at Diagnosis-3.9
Biposy 8/19/08--4 of 12 cores positive; 5% involvement, Gleason 6 (3+3)
 
Surgery 1/26/09-DaVinci Robotic Prostatectomy at Presbyterian Medical Center/HUP-Phila, PA
Dr. David Lee
 
Pathology Report- Adenocarcinoma, no capsular involvement, seminal vesicles clear, lymph nodes clear, negative margins, Gleason 7 (3+4), Stage T2C, NO MX, Prostate 61.8 grams, gland involvement 2-10%
 
Catheter removed after 8 days, totally dry at 3 months. ED issues continue, Viagra (via ADC) nightly (100mgs), VED use in earnest at 6 months. "Ball Park Frank" plumping at this point......ED at 10 months continues to improve, albeit slowly. Continued daily use of 100mg Viagra (ADC). Discontinued pump use; manual stimulation to varying states of erections; achieved penetratable erection on a couple of occasions----At 13 months, nocturnal erections are frequent. Still taking 100mg of ADC Viagra nightly. Libido still in the dumper, but working on it with doctors.
3 month PSA--<0.1
6 month PSA--<0.1
10 month PSA--<0.1
13 monthPSA--<0.1


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4268
   Posted 7/5/2010 1:29 PM (GMT -6)   
No problem in waiting. I waited 7 months before treatment with much worse stats than yours. I think your doctor is giving you good advice. Most doctors and patients don't even consider tumor location when deciding a treatment, and it is one of the most important stats in determining a positive surgical margin and futher radiation treatments. Brachytherapy is a one hour procedure with much less side affects than surgery. There are many long term studies indicating that cure rates for all grades of PC are equal or better than surgery. If you are going to get seeded then find a doctor that has done at least 500 procedures.
JohnT

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 : 25393
   Posted 7/5/2010 1:53 PM (GMT -6)   
You should be more than safe in waiting while you are determining your best course of action. You do seem to be a good candidate for "seeding", and being that it is so much less invasive then any form of surgery, would sure be on my list to consider if I had similar stats to yours.

Thanks for joining us here, look forward to helping and supporting you in any way that we can.

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, next one:  July
Latest:  7/9 cath #6 - 41 days, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, mapped  9/9, 10/1 - 3rd corr. surgery - SP cath, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12 ,Cath #11 - 21 days,  Cath #12 - 41 days, 3/2- Corr Surgery #5, Cath #13 - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, 5/24 put in Cath #17


larch
Regular Member


Date Joined Apr 2010
Total Posts : 47
   Posted 7/5/2010 1:56 PM (GMT -6)   
Jack,

While the ultimate concern here is metastases, and while the intuitive reaction is to act as quickly as possible to prevent metastases, the consensus across a broad band of MD's, not just us amateurs, is that you have time to think and to decide.

BTW, for discussion with docs etc., your PSA's are largely irrelevant, as is your Gleason 6 score. Your key number is your Gleason 7, which designates you as having a somewhat serious/aggressive form of the cancer. The Gleason 7, for example, largely takes Active Surveillance off the table

While as my signature informs I chose a different approach, and one that I am so far very happy with, seeds are clearly one of the premier remedies in terms both of efficacy and side effects in the current state of knowledge.

Don't take forever, and don't not do anything, but you do have the time to talk through issues with the specialists in Houston. Use the time to read up on options and impacts so you understand what you are being told, and so you can ask intelligent questions.

Good luck
Diagnosed 3/10 : Gleason 7 (3+4)
HIFU treatment 6/10


Jack Harkey
New Member


Date Joined Jul 2010
Total Posts : 2
   Posted 7/5/2010 1:59 PM (GMT -6)   
Thanks for the quick replies. I am already slightly more at ease. I look forward to what more of you have to say. Thanks!

Kongo
Regular Member


Date Joined May 2010
Total Posts : 36
   Posted 7/5/2010 2:07 PM (GMT -6)   
While you're at MD Anderson, you might also want to check out the Cyberknife procedure which is administered there for prostate cancer. It's another option that might be appropriate for your pathology.

Good Luck.
============================
Age:  59
Dx:  March 2010
PSA @ Dx:  4.3 (Latest PSA = 2.8 after elimination of dairy)
Gleason:  3+3=6 (confirmed by second pathologist)
Biopsy:  1 of 12 cores contained adenocarcinoma at 15% involvement and no evidence of perineural invasion
DRE: Normal
Stage:  T1c
Bone scan and chest x-rays:  Negative
Prostate Volume: 47 cc
PSA Velocity:  0.19 ng/ml/yr
PSA Density:  0.092 ng/ml/ccm
PSA Doubling Time:  > 10 Years
Treatment Decision:  Will have Cyberknife in June 2010
 
 
 


Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3887
   Posted 7/5/2010 2:13 PM (GMT -6)   
Seeds might work fine for you, see what the experts at MD Anderson say..But at 56, don't be surprised if they are biased towards surgery...

Be sure to look at ALL the angles, including costs. Call your insurance company and get "pre-authorization" before committing to any treatment. Co-pays for cancer treatment can be staggering..

Seeds frequently are combined with IMRT and hormones, three treatment protocols, three sets of side effects to deal with, three sets of co-pays...

So when the Docs finish their sales pitch and ask "do you have any questions?" be sure to include "How much will this cost?".
Age today: 68. Married, 6', 215 pounds, active, no health issues.
PSA at age 55: 3.5, DRE negative. Advice, "Keep an eye on it".
PSA at age 58: 4.5
PSA at age 61: 5.2
PSA at age 64: 7.5, DRE "Abnormal"
PSA at age 65: 8.5, DRE " normal", biopsy, 12 core, negative...
PSA at age 66 9.0 DRE "normal", BPH, Finesteride. (Proscar)
PSA at age 67 4.5 DRE "normal" second biopsy, negative.
PSA at age 67.5 5.6, DRE "normal" U-doc worried..
PSA at age 68, 7.0, third biopsy positive for cancer in 4 cores, 3 cores Gleason 6, one core Gleason 9. Finesteride discontinued, still no urinary symptoms, never had any..From age 55 to 65 I had no health insurance.

I have a date with the robo surgeon on Sept 3 but I'm keeping my options open. A "top" radiation oncologist here in Denver, equipped with the latest IMRT/IGRT/RapidArc machine says he can do better by me..


Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 7/5/2010 3:03 PM (GMT -6)   
Hi Jack, welcome and sorry you are here, both at the same time.

First, you've got cancer, and it's okay to panic.

Second, don't panic. You've got lots of time to be cured of this disease --- and isn't cure the "C" word us cancer folk like to hear!

The above isn't as contradictory as it may seem on first read. When you first get the news the first panic, at least for me, was, am I going to die? Will I make it to Christmas? My birthday? To see my grandchild graduate from high school? This panic was soon replaced by the panic of being faced with a treatment decision, one of the most important decisions I'd ever make in my life, and one I was ill equipped to make. It would be unreasonable not to feel high anxiety and some panic. It's normal. It's okay. But ....

Chill out. Take a deep breath. Don't panic. You've got lots of time to learn, and lots of time to be cured of PCa.

There are two issues with PCa treatments. One is, how effective is it likely to be for you at your age, and with your stats? The second is, how likely is damage, incontinence and ED being the two big ones, and do you feel about that? Then, you may have some trade offs.

I was 67 when I was diagnosed. My mother is nearing 97 and yesterday she went to her cottage. I hope to have her genes, and to roll through 100. It was easy for me to decide what I wanted was a 40 year cure ---- give my heart a fighting chance to take me. And, I was willing to cope with whatever trade offs there might be in the incontinence and ED departments.

There is no right treatment except the one you decide on. Only you can say if you're happy to go with the opinion of one doctor and roll, or if you want to dig in deeper and get more opinons, more options, and decide only after informed understanding and consideration of the alternatives.

What is pretty much for sure is that you really can take a deep breath and chill out some. You don't want to ignore a Gleason 7 (that's what I've got --- or had) but there's no need to put your executor on speed dial either. In a few months you'll have made a treatment decision, a few months after that you'll be treated, and your real health risks will be the things going on under your skin you don't know about ---- not the one that's being monitored.

Keep on posting, Jack. This is a great place to ask questions and learn.

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
From "knock out" to wake up in recovery less than two hours.  Actual surgery 70 minutes
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
 
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
 
First post op PSA Sept 09  less than 0.02
PSA on Oct 23 test again less than 0.02
PSA on Jan 8 less than 0.02
PSA on April 9 less than 0.02 
 
  

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