Newly diagnosed - Tx for High Gleason?

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ConcernedDC
New Member


Date Joined Nov 2008
Total Posts : 5
   Posted 2/22/2009 4:21 PM (GMT -6)   
Well I finally got the results of my biopsy (while halfway through my vacation in hawaii).  Two of 12 cores positive, one a Gleason 6 and one a 10 (20 percent of that core involved, whatever that means).  Not what I wanted to hear.  I have an appointment tomorrow at the Walter Reed Center for Prostate Disease Research, an all-day affair where my wife and I meet with surgeons, radiation docs, a psychologist, etc., to help decide on a course of treatment.  I have learned so much from all of you on this site already, and would be interested in hearing your opinions now.  Does surgery make sense for a high gleason score?  What is the main question I should be asking my urologist (or the other doctors) right now?  I always thought that if I had a positive biopsy I'd have plenty of time to make decisions but now I think I'd better move out quickly.  I'm scheduled for a bone scan and a CT scan - hoping those come out negative.  Luckily I have a very stong, supportive wife.
My dad is still hanging in there, not at all bitter or depressed, although I tell you end-stage PC is not pretty.  I haven't told him or mom of my dx - they don't even know I had the biiopsy.  One other question - is there a thread I can direct my wife to regarding stuff she should know, and if so how do I find the thread?  Thanks very much.
Steve

Age 49
PSA: 
Feb 2006 - 2.1
Feb 2007 - 2.9
Oct 2008 - 3.8
Nov 2008 - 4.2
 
DRE - GP said he felt something; Urologist said he didn't feel anything.
Biopsy done 15 December.  Awaiting results.
 
My Father: DX with PC in 1994 at age 62.  Had already spread outside prostate.  Radiation, hormones.  It came back in 2006 - chemotherapy treatment.  He is now under Hospice care.
 


rob2
Veteran Member


Date Joined Apr 2008
Total Posts : 1131
   Posted 2/22/2009 4:55 PM (GMT -6)   
I am 49 now. I was diagnosed last year. My PSA went up one year over a point. The doctor put me on antibiotics. After a month, the PSA went down. I was tested 4 months later, PSA up again. I had a biopsy and it came back Gleason 7 (3+4) (6 out of 12 samples taken were cancer). I went through the anxiety you are going through now. I ultimately decided on surgery and the post op came back gleason 8. After my bisopsy and diagnosis, I didn't tell anyone for 3 days. It was the longest 3 days of my life. for me, I needed to talk to someone. I uge you to talk to someone and continue talking. This site provides a lot of help and information. One thing I did was write down every possible questions when I met with the doctor. I wish I had taken a tape recorder with me because I was so strung out and stressed out, I forgot half the things he said to me. I went for surgery with gleason 7 and would have gone with gleason 8.
 
Age 49
occupation accountant
PSA increased from 2.6 to 3.5 in one year
biopsy march 2008 - cancer present gleason 7
decision - surgery (robotic)
Surgery May 9, 2008 - houston, tx
Pathology report -gleason 8
margins clear
9 month  PSA <.04 (low as the machine will go)
continent at 10 weeks (no pads!)
ED is still an issue


divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 2/22/2009 5:19 PM (GMT -6)   
Tony has a list of questions to ask doctors that is very good....Concerned DC....I am a wife, and there are no sites that I know of for wives..( other than this) ..I have learned so much here, and I post for my husband.....Good luck to you and come back and the guys will get you on the right track.....Diane
Husband Pete
dx Jan 2001 gleason 4 + 3 PSA 16.5
Seed implant and conformal radiation and Lupron from Jan 2001 to Jan2002
2005 Dec PSA began to rise from .5 to 8 within 6 months
Salvage surgery at MSK 9/06 Dr. Eastham
Fistula operation 2/07 MSK Dr. Wong
Many cystoscopies and ER visits with strictures
Catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/08
AUS Operation at MSK Sept 8 2008 Dr. Sandhu
Activated Oct 28th Dr. Sandhu..MSK
Some difficulty with AUS arising Nov 10 2008
Meeting with Dr. Sandhu to discuss AUS problems and new PSA test Dec 11, 2008
PSA .6 12/08
AUS improving..only 2 pads a day and one at night
Complete hip replacement surgery Dr. Waters Gainesville, FL 1/9/09
Hip replacement total success..pain gone!!
PSA .7 2/10/09


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 2/22/2009 5:32 PM (GMT -6)   
ConcernedDC,
Tony's link to the questions for your doc are linked in the post below. A tape recorder with you is a good idea as suggested as a lot of things do not register...............check it's O.K. first with the doc as a matter of courtesy(I couldn't see why any would object)
www.healingwell.com/community/default.aspx?f=35&m=1355474

Bill
1/05 PSA----2.9 3/06-----3.2 3/07-------4.1 5/07------3.9 All negative DREs
Aged 59 when diagnosed
Biopsy 6/07
4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007
Post-op pathology:
Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct 07 <0.1 undetectable
PSA Jan 08 <0.1 undetectable
PSA April 08 <0.001 undetectable (disregarded due to lab "misreporting")
PSA August 08 <0.001 undetectable (disregarded due to lab "misreporting")
Post-op pathology rechecked by new lab:
Gleason downgraded to 4+3=7
Focal extension comprised of grade 3 cells
PSA September 08 <0.01 (new lab)
PSA February 09 <0.01


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4203
   Posted 2/22/2009 6:33 PM (GMT -6)   

Concerned,

With a gleason of 10 you should also add a prostate oncologist to the list of doctors you see.

JohnT


I had a psa of 4.4 in 1999 and steadily increasing psa every 3-6 months before reaching 40 in 5-08.Free psa ranged from 16 to 10%

I had biopsies every year, 13 total in all. I saw 5 different doctors, all urologists or urological oncologists at Long Beach, UCLA, UCSF and UCI and had an MRIS at UCSF in 2007. All tests were negative and I was told that because of all the biopsies I most likely didn't have PC, but to keep getting biopsies every year.

in Oct 08 my 13th biopsy of 25 cores indicated 2 positive cores, gleason 3+3 less that 5% in 2 cores. Doc recommended surgery.

2nd opinion from a prostate oncologist, referred by my wife's oncologists said cancer found wis indolant and statistacally insignificant, but PSA histor was a major concern and ordered a few more tests.

Color Doppler ultrasound with targeted biopsy found a transition zone tumor 18mmX16mm, gleason 3+4 and 4+3. CT and bone scans clear, but Doc thinks that there may be lymph node involvement (30% chance) because of my high PSA, and referred me for a Combidex MRI in Holland, currently scheduled for Feb 14.

Changed diet and takiing supplements while I wait. The location of the tumor plus the high psa make surgery an unlikely option. I'm still evaluatiing all treatment options and will make a decision once I get the results of the Combidex scan.

JohnT


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25372
   Posted 2/22/2009 6:40 PM (GMT -6)   
Hello and welcome Steve. Sorry you need to be here, but its usually bad news like your dx. that brings people here. I feel HW is the best patient to patient prostate cancer site you will find. With your stats, and the fact that your father is in hospice with PC, you will need all the help and support you can get, we will do our part for you. As JohnT above mention, and others above his posts, you need to make your rounds with the best of the best for consultations. Glad you have a good supportive wife, that is so important in what may lie ahead for you, many of us do and it really helps. My best to your father too.

David in SC
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3
3rd Biopsy 9/8 Positive 7 of 7 cores pos, 40-90%, Gleason 7
Open RP surgery 11/14/8, Right nerves saved, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9 .05
 
 


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 2/22/2009 6:49 PM (GMT -6)   
Steve welcome to the site. The anxiety your are feeling is very normal and let me just say there is no better place anywhere than right here at HW to share it with.
please share in the discussions and by all means ask plenty of questions. I am not the person with much knowledge but I am someone you can lean on for emotional and spiritual support.
I look forward to hearing more from you
peace and love
dale
My PSA at diagnosis was 16.3
age 46 (current)
My gleason score from prostate was 4+5=9 and from the lymph nodes was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11
PSA July 24th, 2008 is 0.04
PSA Dec 16th, 2008 is .06
Testosterone keeps rising, the current number is 156, up from 57 in May
cancer in 4 of 6 cores
92%
80%
37%
28%
 


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2458
   Posted 2/22/2009 7:38 PM (GMT -6)   
Steve,
Sorry to hear about your Dx. My biopsy showed very similar results to yours. I had 2 cores scored as 8 and 9. I did the CT and bone scan and they were both negative. At that point I opted for surgery (robotic) with the intention of doing radiation later if cancer has spread beyond the prostate. My pathology report was encouraging. I had so seminal vesicle invasion and had clear margins. The doctor had to go wide on the left side where the positive cores were. I'm now waiting to take my first PSA test in few weeks and hoping for a big fat zero. Your nervousness is understandable but don't lose hope. Get all the information you can and decide on how to proceed.
Age: 67
Retired in 2001 and living in Austin TX.
PSA 3.5 free PSA 11%
Dx 12/30/08
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed on Feb 9th
Surgeon: Dr. Randy Fagin, Austin TX.
Post op Pathology report:
Prostate weighed 57 grams
size:5.2 x 5.0 x 4.9 cm
10-20% involved
Bilateral
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx
Negative margins
Lymph nodes: not dissected
seminal vesicles clean


Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 2/22/2009 8:06 PM (GMT -6)   
Concerned,
We understand what you're feeling right now. It's a scary time. There are tons of options, so don't panic. This site is a great starting point. I also joined a live support group and I have to say it is one of the best decisions I made. Look at www.ustoo.com. It is a nationwide support system for PCa patients and their wives. Your wife will be able to connect with other wives and you will meet some great guys. The internet is great, but nothing compares with real life support. The American Cancer Society has a great support system too http://csn.cancer.org/.
I was diagnosed with PCa the day before my dad died of it, so, wow, do I relate to what you're feeling in that area. I too did not tell my mother until I had scheduled my surgery. Reach out, stay connected. As a good friend of mine who had PCa at 44 told me "you've got some rough paddling ahead of you, but you're going to be fine." I say the same to you.
46 at Diagnosis.
Father died of Pca 4/07 at 86.
1/06 PSA 3.15
1/07 PSA 4.6 (Biopsy 3/07 just suspicious)
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
-totally contained to prostate,
-10% involvement in L & R Mid lobes
PSA 0 at nine months.
Pad free on March 14 - (10 weeks.) Never a problem since.
ED - Took 100mg viagra every night. for several months
Totally usable erections at 10 weeks, which disappeared over the course of a month or two.
ED bounce is what they call it. Now, at one year, ED is fine with viagra.
One year PSA - undectable!


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 2/22/2009 8:36 PM (GMT -6)   
I must say it is rare to see a Gleason 6 and a Gleason 10 in the same arena of PCa diagnosis, I cannot remember seeing another patient with this much difference but this is PCa and exceptions exist.

Suggestions to you: get the actual pathology report in your hands bring the information onto this forum and others (also learn what is says)- always verify PCa things that could have you make life altering decisions on is wise. Next probably ask to have your pathology sent to one of the handful of pathologists that are considered 'The Experts" and see if that Gleason 10 is correct or even the 6, it is well worth it and do not be swayed by the docs you maybe seeing that it is not worth it or such (bull). Google search: PCa pathology and find: Bostwick, Oppenheimer, Epstein, Grignon, Lucia (insurance will cover it or pay the fee) you might also ask for the additional 'plodity testing' especially since you have a possible gleason 10. Have seen many times that reviewed pathology is not what the original findings were, usually not done by the top experts first time in many cases and need review, even so 2nd opinion on major parameters is not dumb.

Dx-2002 (Age 51)Urinary blockage-emergency room, bPsa-46.6  12/12 biopsies all 80-90% cancerous (loaded), Gleasons 7,8,9 both sides similar, ct and  bone scans (showed clear, does not guarantee anything) histology type of cancer  Acinar  (ADT3+rad+ADT3-off-on/DES-off-on again Nov. 2008) psa currently  .36


 

Post Edited (zufus) : 2/22/2009 9:03:42 PM (GMT-7)


kcragman
Regular Member


Date Joined May 2008
Total Posts : 240
   Posted 2/22/2009 8:41 PM (GMT -6)   
ConcernedDC -

You may want to read my recent post titled "High Risk Info." I had surgery in DC - apparently with a Gleason 9 case - and I'm doing OK. My doc says surgery (or at least his surgery) is a viable option for high risk patients. But incontinence and ED are always post-surgery issues. All treatment paths have their pluses and minuses. Be sure you do as much research as possible and get comfortable with a treatment path.

Lots of good info and support here -

I wish you the best,
kcragman
Age: 53; 52 at DX
March 2006: PSA 2.5
Dec 2007: PSA taken for insurance application. I did not see the results until late
Jan '08 - after I was rejected. Their lab said PSA 4.5.
Feb 2008: PSA 3.7.
March 2008: Biopsy. Gleason 7 (4+3) 12 cores taken. 5 on the left side were
cancerous and the 6th was suspect.
May 5, 2008: Da Vinci robotic laparoscopy at GW Hospital, Washington DC.

Post op: Gleason 9 (4+5). 15% of prostate involved. Stage: pT3a. Negative margins. Lymph node and nerve samples taken, and appeared to be cancer free.

July 2008: PSA at 7 weeks was undetectable.
August 2008: PSA at 14 weeks (3 months) was undetectable.
Nov 2008: PSA at 6 months was undetectable.
Feb 2009: PSA at 9 months was undetectable.

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