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grouchytx
Regular Member


Date Joined Oct 2009
Total Posts : 32
   Posted 10/31/2009 4:47 PM (GMT -6)   
Just found you folks this evening. I am going to spend a lot of time looking through the topics.

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 10/31/2009 4:54 PM (GMT -6)   
Good evening and welcome to HW. Sorry you have to show up here, but glad you came. There's lots to do here, so dig in. First thing could be making up a signature with the particulars of your trip so far. Go to the Control Panel, then Edit Profile, scroll to the bottom and fill in the signature box with your stats and history. Again, welcome.
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
24 mts: PSA's: .04 each test since surgery, Bimix .3ml PRN or Trimix .15ml PRN


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 10/31/2009 5:08 PM (GMT -6)   
Welcome to HW. Only been here a few months myself and I can tell you that this is a very supportive and knowledgeable group. As James said give us a little info about yourself in the signature line. It helps to have the info if you ask a question or 2 and wer are trying to figure how to answer.

So come on in, have a seat and strike up a good conversation,

Sonny
61 years old
PSA 11/07 3.0
PSA 5/09 6.4
Diagnosis confirmed July 9, 2009
12 Needle Biopsy = 9 clear , 3 postive
<5%, 90%, 40%
Gleason Score (3+4) 7 in all positive cores
CT Organ Scan - negative
Nuclear Bone Scan - Negative

da Vinci 9/17/09 Dr. Mani Menon Henry Ford Medical Institute

Post Surgery Pathology:
Gleason: Changed to (4+3) = 7
Stage: T3a
Tumor Volume 12.5%
ALL NERVES SPARED
Margins: focally positive right posterior mid level
Perineural Invasion: present
Seminal Invasion: absent
Venous Invasion: absent
Angiolymphatic Invasion: absent
Left Internal iliac lymph node: reveals zero
Right Internal lymph node: reveals zero


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 10/31/2009 5:32 PM (GMT -6)   
Welcome grouchytx,
You have arrived at what I consider the best forum on the web for patient to patient discussion of this disease. We have members at all stages who have undergone all the different treatments encompassing successes and complications. The input from people who have already been down the road you are on is invaluable. Many are extremely knowledgeable and all are keen to help. I have seen many come to this forum full of anxiety and woe (we have all been there) and within a week of speaking with members their entire perspective of this disease changes. No question is off limits so if you have any ask away.
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
PSA August 09 (2 year mark), <0.01


grouchytx
Regular Member


Date Joined Oct 2009
Total Posts : 32
   Posted 10/31/2009 6:10 PM (GMT -6)   
Thanks for the welcome.  I added some information and will see if it pops up after I post this.  My family, particularly the kids, are not real pleased with my treatment choices.  My wife understands and supports my decision, but she is pretty scared.  Oddly enough I am not. I am a realist and I never look back after I make a decision. 
 
I chose a good place in San Antonio for my treatment.  We live south of Fort Worth but my work has kept me in south Texas for  most of this year and I did not want to stay home for treatment.
Age: 63
 
Gleason: 8 (5+3) Biopsys ranged from 90% to 100%
Refused surgery and hormone therapy. Doctor really made an argument for benefits of hormone therapy, I could not accept the consequences.
 
Just finished 17 of 28 daily radiation treatments.  Will then get seed implants.
 
PSA: 13
 
Let the chips fall where they may.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 10/31/2009 6:36 PM (GMT -6)   
Welcome Grouchy to HW, glad you were able to find us.

You stats are pretty serious. With your Gleason and PSA so high, why did you turn down surgery? Certainly not questioning your right to choose what you want. In my area, based only on the stats you provided, seeding would not have been reccomended. You show a Biopsy Gleason of 5+3 = 8, that 5 component is some extremely serious and agressive cancer cells as you know.

Perhaps you can share some more about your situation.

This is a great place for support, no matter what treatment plan a person takes. We have several men that did "seeding", so I am sure they will add some advice on the subject.

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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
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 - began IMRT SRT - 39 sessions/72 gys.


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 10/31/2009 6:42 PM (GMT -6)   
Grouchy (got to love that handle),
Your wife and kids might find it helpful and somewhat reassuring to read the stories of other fellas with gleason 8 and above on another great site known as YANANOW. Plenty of them there, many who have chosen the same path as yourself. You can find them here:
www.yananow.net/Chart-Gleasonu6.htm#8
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
PSA August 09 (2 year mark), <0.01


Herophilus
Veteran Member


Date Joined Sep 2009
Total Posts : 662
   Posted 10/31/2009 7:53 PM (GMT -6)   
Glad you found the best site in the E-world..Good luck to you...God Speed
jnm
Age: 51 years,
Overall Health: Excellent
PSA: 08/31/2009   6.8
DRE: 09/10/2009 "nothing really" ????
BXY: Scheduled at 08:30 on 09/24/2009
GLEASON 3+3=6
Cores 10 of 12 positive
SURG: da Vinci Scheduled for November 2 2009 
 


GTA
Regular Member


Date Joined Aug 2009
Total Posts : 27
   Posted 10/31/2009 9:17 PM (GMT -6)   
Hi GrouchTX,
As Purgatory mentioned " your stats are pretty serious" for that kind of treatment. At any rate we respect your decision. Please keep us informed. We wish you the best and hope everything work fine for you. Good luck.

GTA
57 year old
1st. biopsy atypical
2nd. biopsy 7/07/09 3 out 12 cores positive all 3x3's Gleason 6
PSA 3.4
T1c

Had a moderate BPH for past 4, 5 years. Medication did not help.
cycling, walking and other physical activities decrease my "voiding problem by 75%.
Driving my car, sitting around at work or watching TV and inactivity increase it by 75%

Diet: 98% animal fat free for past 25 years at least.
I watch what I eat, mostly organic and well made products, but I am always on the look out for any food or drink that causes me any digestive problem and I eliminate it from my diet.

Drinks: Mostly red wine with lunch/dinner

Activity: Walking 5 to 7 miles every other day. Cycling 15 to 20 miles every other day.

Action taken: Still in the research and learning stage.


TeddyG
Regular Member


Date Joined Apr 2009
Total Posts : 133
   Posted 10/31/2009 9:29 PM (GMT -6)   

Grouch,

Like us all, the hardest decision was what to do and where. You made the decision and there is no looking back. Bet wishes in your treatment.

Ted


Background:
Age 55, two teens, very fit cyclist (avg 2000+ miles per year) and weight, diet, etc. consistent with good habits. Stressful job as attorney; very supporting wife who is helping me through every stage of this war.
Stats:
2006 PSA - 1.5
2007 PSA - 2.3
2008 PSA - 5.3 (18 mos.)
2009 Jan. 20 - Biopsy 12 samples
        Feb 3 Dx 2/12 samples positive, low volume  (5% and 7-10%)
Gleason 3+4, later downgraded by second opinion at Johns-Hopkins to 3+3, but "it's still PCa" as my Doc said.
Laproscopic surgery April 9,  University of KY Medical Center, Lexington, 3 days in hospital, catheter removal April 21.
Pathology: clear margins, no cancer in prostate: told that this is very rare and Doc has only seen it in 3 out of over 1400 cases; I rearched the concept of "vanishing cancer" and found a tumor classification of tP0 and asked Doc if it applied to me. He said that it was unlikely because if a pathologist had done a much more detailed analysis of the tissue, he would likely find more foci somewhere, and biopsy found "needle in the haystack as opposed to the tip of the iceberg"; Nevertheless, it is a blessing;
Regardless of the science, my family says "miracle."
Now working w/ post-surgery issues....
 


Modelshipwright
Regular Member


Date Joined May 2009
Total Posts : 215
   Posted 11/1/2009 7:28 AM (GMT -6)   
Welcome to the best supprt group around. We are looking forward to sharing your experiences.

Keep well,
Regards,
Bill
Pre-Op:
 
Age 64. Diagnosed with Pca January 2009.
PSA 5.6, Gleason 3+3=6, T1c
 
Biopsy:
 
TRUS biopsies of prostate left adenocarcinoma of prostate involving part of 1/4 biopsy fragments, less than 10% of the surface area involved, CT scan clear.
 
Treatment choice:
 
Robotic Assisted Laparoscopic Prostatectomy - September 29/09. 
Pre-op PSA down to 5.28 which I attribute to visualization techniques and a new vegetarian diet.
 
Post-Op:
 
Robotic Prostatectomy - 09/29/09, back home 10/02/09.
 
Pathology - 10/14/09  Gleason Score remained at 3+3 = 6 as it was when originally diagnosed. There were no positive margins. Tumors were found in both lobes and involved 3-5% of the prostate. There was no Seminal Vesicle, Perineural, Lymphovascular or Lymph node involvement, and the bladder neck was also cancer free. 
 
Continence
 
10/16/09 - 3-4 pads a day and working on pelvic floor exercises as prescribed.
 
Potency:
 
10/16/09 - Zip, nada
 
State of mind:
 
Excellent - always positive.
 
 


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 11/1/2009 8:31 AM (GMT -6)   
There is nothing wrong with your decision and protocol and it has a good statistical record and for even a high risk patient (as to control and long term side effects)...the key in any treatment is the expertise of the one doing such. It is quite likely you will do well as to possible side effects from this and might even have manhood intact down the line and continency, so there are some positives to look towards (coming from this dark horse-LOL).

I would presume you are getting IMRT radiation via photon rays and not using any outdated machinery like EBRT machines. New patients whom likely know little or nothing on radiation there are various types of machines available, 3 possible rays that can be used against PCa and they have differences within them. Type of delivery, exposure time-rates-amounts are variables that the rad-onco doc could advise you about, if interested. With seeds and exterior radiation it can be done, seeds first or outside radiation first (there are discussions on the merits of even that). Total body exposure to radiations, has a limit also as to the safety range and you could ask your doc are you getting the absolute max within those limits, if your case merits such, not all cases would merit such. You can read about side effects that are considered the normal course of action so you know what you can probably expect. It can be better than one might anticipate, in the old days radiation was bad with alot of collateral damage and patients with issues thereafter...I believe that is not what is the norm today and now.

Zufus-aka Neutrondbob: radiation & hormone therapies (patient-victum-LOL) -glad I found an excellent rad-onco doc with alot efforts (multiple opinions), Dx-2002 (total urinary blockage to emergency room) bpsa 46.6 12/12 biopsies 75-95% range in all of the 12 cores, with gleason scores found 7,8,9's on both sides of the gland, ct and bone scans showed clear (not definitive enough either is the way it is on such). Radiations:
2-machines used: Cyclotron-Neutron rays 10 sessions and then IMRT-photon rays about 20-25 sessions, got maximum rates I was told and asked for such. Still here and doing fine at this juncture...so coming up on 8 yrs., hopefully that inspires your case. One opinion I got was from Dr. Menon 1st DaVinci doc in USA, he said blunty...I will not do surgery on you... He did not want the money nor probably the failed patient to show up a few weeks later. I valued his frankness and non-sugar coated opinion. The other surgeon I saw the day before his opinion was guaranteeing me a cure and 1% chance of incontinence. So, I was not shopping for the opinion I wanted to hear but for the truthfulness of what am I dealing with, maybe some see the value of second opinion(s). yeah
Best to you

Post Edited (zufus) : 11/1/2009 7:36:23 AM (GMT-7)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 11/1/2009 9:24 AM (GMT -6)   
zufas, if a surgeon guaranteed a cure and 1% chance of incontinence, I would almost see that as pre-meditated malpractice, lol. I would have ran out of his office, sounds like you did to.

Thats one thing I love about my current medical team, no one tries to blow smoke up my a**. I get any data, information, and opinions straight at me. That's the only way my brain can digest it, whether it be good news, bad news, or neutral news.
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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
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 - began IMRT SRT - 39 sessions/72 gys.


grouchytx
Regular Member


Date Joined Oct 2009
Total Posts : 32
   Posted 11/1/2009 9:44 AM (GMT -6)   
Thanks to all of you for your comments and welcomes.
 
To answer a few of the questions:
 
I turned down the surgical options for a couple of reasons, the #1 being the probability of impotence.  Also the surgeon, who has a very good record and reputation stated that with my levels it would also be necessary to do the hormone and radiation treaatments.
 
I appreciated the link to the other site and will check it out.
 
The daily treatments are being done with IMRT.  Perhaps I am deluding myself, but I truly believe that the doctor I chose is pretty much on the cutting edge of treatment therapies.  As I mentioned, he pushed for also doing the hormone thing. He told me that statistics showed a 15-20% better success rate with it,  but I rejected it based on impotence.
 
I look forward to hearing from y'all.
 
Bill
Age: 63
 
Gleason: 8 (5+3) Biopsys ranged from 90% to 100%
Refused surgery and hormone therapy. Doctor really made an argument for benefits of hormone therapy, I could not accept the consequences.
 
Just finished 17 of 28 daily radiation treatments.  Will then get seed implants.
 
PSA: 13
 
Let the chips fall where they may.


brainsurgeon
Regular Member


Date Joined Jul 2009
Total Posts : 137
   Posted 11/1/2009 11:46 AM (GMT -6)   
Bill,
I have ask that you remember that a stiff di*k in a coffin is not worth much. Your decision, but do not be blind sided by a single factor. No matter what, I wish you the very best!
70 years old USA citizen
Prostatic carcinoma dxed June 2009 by PSA (7.0) and then Bx
PSAs yearly since 2001 ranged 1.52 to 7.0
Neg. CT and BS
4 of 8 biopsies positive (all right side) Gleason Score 3+4=7
Robotic assisted total prostatectomy and node excision July 2009 in Luzern, Switzerland by Dr. Mattei in the Kantonsspital
pT2c G3 pN0 (0/14)
Catheter out in 5 days (home in 3 days)
No incontinence
Potency: beginning tumescence??? at 3 weeks post-op. Still happens at 3 months PO
3month PSA less than 0.01


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 11/1/2009 12:45 PM (GMT -6)   
Bill, I was just thinking the same thought. Of course I respect any decision you or another brother makes, whether I agree or disagree, its your life and your body.

But I hope your primary goal and purpose of your treatment is what is the best chance and opportunity to rid your body of prostate cancer. There isn't any treatment out there that won't have side effects, and with surgical approaches, you are going to hit those side effects of incontinence issues and ED right away, where as in the radiation and hormone methods, they will come later.

I am old school in my approach, I still agree with the thinking of my own medical team. Cancer first, Incontinence second, ED third.

Good luck to you.

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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
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 - began IMRT SRT - 39 sessions/72 gys.


waterloo
Regular Member


Date Joined Jan 2009
Total Posts : 100
   Posted 11/1/2009 1:14 PM (GMT -6)   
GROUCHYTX

David and Brainsurgey well said.
This is from the wife's side of thing's(mine only).Impotence is the last thing I worry about .The biggest thing I think about is the lenght and quality of life I will have with my husband .
Deidre
    My Husband age 54 at diagnosis
   Radical prostateectomy  in Sept 2006
  • Original Gleason 3+4=7 post op 4+3=7
  • Post Op .004
  • May08 psa 0.05
  • July08 psa 0.09
  • Oct08 psa 0.16
  • Jan09 psa 0.24
  • start"s radiation on March 12/09(33) in total
  • July 09 psa 0.4  TESTOSTERONE 15
  • SEPT 09 PSA 0.55  TESTOSTERONE 13 
  • Bone Scan Oct 19 09  CLEAR (YA HOO)


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4151
   Posted 11/1/2009 1:31 PM (GMT -6)   

Dear Grouch:

Don't let anyone tell you that your choice of treament is incorrect.  There seems to be a myth (probably perpetuated by surgeons) that high G patients should start with surgery.  In fact, as zufus pointed out, there is plenty of data that indicates that your selection of radiation and seeds in high G patients provides good results.  I can, however, understand that your docs prefer to add HT to make sure but there IS a good chance of success with the path you have chosen.  And...as you well know...your SE's are likely to be much milder than if you had started with surgery.

Good luck and please let us know how you progress.

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 9/1/09.  6 month PSA  1.4 and my docs are "delighted"!
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