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VtHiker
New Member


Date Joined Nov 2010
Total Posts : 2
   Posted 11/18/2010 3:03 PM (GMT -6)   
Afternoon:
 
New member to your club, wished it was a different club.
 
In the process of trying to select the best treatment route to follow. On the talble is surgery, either open or daVinci, radiation (5 weeks external beam followed by seeds) or proton .
 
It is certainly a difficult process to go through to decide which route to take, there are both very success stories and then the bad stories which tend to cloud the choices.
 
Doc says I should come to my decision within the next 30-45 days. Great holiday project.
 
Both my wife and family are very supportive and involved in the process.
 
This is a great forum and appreciate all the informatin, already on my third book on the subject and am attedning local support groups to get information.
 
  

Age 61
PAS 10/10 = 8.3
Biopsy Results 11/05/10 = Gleason (4+3)=7
3 of 12 cores positive, 15 to 25% density only in left lobe

Jazzman1
Veteran Member


Date Joined Sep 2010
Total Posts : 1160
   Posted 11/18/2010 3:32 PM (GMT -6)   
It's a bummer that you have to be here, but welcome.

Someone will surely correct me if I'm wrong, but I think your numbers indicate that all of the options you mention are viable. Consider the possibility that with a 4+3, you may need more than one therapy before you're done with this. However, you should also realize that this is very treatable and you're chances of a good outcome are very good.

My comment is more about process than a specific treatment course. I suggest you learn all you can, read several books, and immerse yourself in the threads here, including older ones. Johns Hopkins Medical Center has some excellent information, including videos, nomograms, and patient information pieces. Get Dr. Patrick Walsh's book, Surviving Prostate Cancer (2007 version). It's the bible.

Also, avoid some of the less credible information on the internet. Centers of excellence, like the Mayo Clinic, Cleveland Clinic, and Johns Hopkins are excellent information sources, as is the American Cancer Society. Other sources may or not be credible, so be discriminating in your online reading.

Consider getting a second opinion from a medical oncologist who specializes in PCa. It was one of the most helpful things I did when I was faced with your choices. These are the guys who deal with patients after their first course of treatment fails, and they have a unique perspective. They also generally have no axe to grind regarding surgery vs. radiation.

Finally, don't let anyone here or anywhere else tell you there's only one way to go with this. Keep an open mind and trust your own instincts. Consider how you feel about radiation and its side effects vs. surgery and it's side effects. There's no easy way out of this and there's no treatment modality that doesn't have a downside, so pick your discomforts carefully. Also, consider how conservative you want to be about this.

My doc says that he can't tell people what treatment modality to select because he doesn't have their value system. I think there's a lot to that. You're on your own with this decision in the end. Educate yourself, make a choice and don't look back. If you have specific questions, this is a great place to raise them. Good luck with this, and remember that chances are you'll be just fine whatever you choose.
Age 55
PSA: 8/09 2.69 -- 7/10 4.00 -- 8/10 4.11
--------------------------------------------------
Biopsy 8/10
Three of 14 cores positive: 10%, 60% & 80%
Stage T1C; Gleason 6
---------------------------------------------------------------
open radical prostatectomy at Cleveland Clinic 11/2/10
Post-surgical pathology:
Gleason score 7 (3+4); Three positive margins
Stage T2c(+)

TinFoilHat
Regular Member


Date Joined Sep 2010
Total Posts : 51
   Posted 11/18/2010 3:38 PM (GMT -6)   
Welcome, and sorry to see you here.

You'll find this site (and the members) to be a wealth of information. I don't know what I'd have done without this place.
Jeff

Age: 49 (09/61)

PSAs: 12/08 - 1.8, 12/09 - 2.5, 6/10 - 3.9, 8/10 - 5.7

Biopsy 8/10: 14 samples, 5 positive, Gleason: 3 + 3

open RP 9/23/2010

Post Op Path: Organ contained, Gleason 3+3, nerve bundles spared, negative margin.

6 week post-op PSA < .01

Arnie
Regular Member


Date Joined Aug 2009
Total Posts : 372
   Posted 11/18/2010 3:39 PM (GMT -6)   
Vthiker-----I thought we had the club door locked tight, but apparently you were able to wedge your way in!---------seriously, welcome! Good advice above from Jazzman. Knowledge is power in terms of your ultimate decision with respect to treatment of any kind. We are here to provide support and as much info as we can. Read and ask questions, and then ask and read some more. 
 
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

18 month PSA--<0.1

Ger42
Regular Member


Date Joined Apr 2010
Total Posts : 189
   Posted 11/18/2010 4:00 PM (GMT -6)   
Sorry to welcome you to this dam club. As has been written before me do your research. You'll find you will need to weed through all the options. It's unfortunate but there is no one person who can sit you down and make the decision for you. Ask all the questions you can think of. I'm sure once you've taken your tour of all the posts you will see we discuss everything.
Good luck and keep in mind you are not alone we have all been where you are today.
Age 68 weight 185 height 6'
Samples taken 4/19/2010 sent to Bostwick
3 out of 12 samples cancer
1) gleason score 3+3 involving 65%
2) gleason score 3+3 involving 65%
3) gleason score 3+3 involving 10%
PSA 3.5 Mar 19
PSA 2.5 Apr 4
Bone scan clean CT scan clean
Da Vinci 10/12/2010 DR Paul Kahn all nerves spared
Home 10/19/20
Cath out 10/22/2010
Prostate 56 gm. Gleason grade 3+4 = 7

Bandersnatch
New Member


Date Joined Sep 2010
Total Posts : 16
   Posted 11/18/2010 4:33 PM (GMT -6)   
Welcome and sorry your here. This forum has been a godsend for me and my wife, there is comfort with-in the group.
Besides the good advice others have given, I suggest two things.

1. Let your wife be a part of your journey, good , bad and ugly parts all.

2. Keep in mind that no-one can tell the future but there are many of us who are as good or better than when we were back in your shoes.
Age 53 no symptoms.
1/2010 First ever PSA 5.4 DRE abnormal
2/2010 First urologist exam PSA 5.5
3/17/2010 Biopsy 7 of 8 cores positive avg 20% Gleason 6=3+3
6/15/2010 Davinci by Dr. Williams Cincinnati. Over 400 performed
Labs prostate size 36g, 15% involved Margins uninvolved
No extraprostatic or seminal vesicle invasion
perineural invasion present
nerves spared
Final Gleason 6=3+3

bsjoplin
Regular Member


Date Joined Feb 2010
Total Posts : 308
   Posted 11/18/2010 5:14 PM (GMT -6)   
Hey, there Hiker...welcome to the group !  we're wishing you all the best..keep checking back in and keep us posted...
bob
 
Age@dx:55
5/05 PSA:1.8
12/07 PSA:3.7
7/08 PSA:4.7
8/08 Biopsy#1:3 of 6 irreg
11/08 PSA:6.5
12/08 Biopsy#2:of 12,3 cancer,other 9 irreg;Gl:3+3=6
1/22/09 RRP
1/25/09 Released
1/28/09 Path: PCa on 10%, lymph & SV benign, Gl:3+4=7,stage T2c
2/13/09 PSA:0.1
6/09 PSA:0.1
10/09 PSA:0.1
2/10 PSA:0.3
4/10 PSA:0.4 Referred to RO
5/4/10 First RT
6/25/10 Final RT;ended up 36 treatments,64.8 Gy.
8/10 PSA:0.2
11/10 PSA: 0.1

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3787
   Posted 11/18/2010 5:40 PM (GMT -6)   
This can be a rough time..It's real easy to go into information overload..After all, you and I are not doctors, what do we know about this stuff?? But you will learn and learn fast...

I chose surgery...I knew it was a longshot going in (you have better odds) but I liked the fact I could try again with radiation if surgery failed..If I had known then what I know now, I would have done the combined seeds and external beam radiation treatment even if it meant traveling to a distant treatment center to get it done..My HMO style insurance handcuffed me to a certain extent..My surgery was not successful and I start salvage radiation and ADT in December..Now I must deal with the side effects of all three methods of treatment all at once..

Jazzman has learned very fast and his advise is sound, especially about consulting with a medical oncologist to help make your primary treatment decision..He has no dog in this fight but he has seen it all many times..His insights may be helpful to you. He will point out things the surgeon and R-doc may have skipped over...These will not be days of Wine & Roses...

Best of luck to you as you begin your journey..
Age 68.
PSA at age 55: 3.5, DRE normal. Advice, "Keep an eye on it".
age 58: 4.5
" 61: 5.2
" 64: 7.5, DRE "Abnormal"
" 65: 8.5, " normal", biopsy, 12 core, negative...
" 66 9.0 "normal", 2ed biopsy, negative, BPH, Proscar
" 67 4.5 DRE "normal"
" 68 7.0 third biopsy positive, 4 out of 12, G-6,7, 9
RRP Sept 3 2010, pos margin, one pos vesicle nodes neg. Post Op PSA 0.9 SRT, HT, Dec

vtshehiker
New Member


Date Joined Nov 2010
Total Posts : 1
   Posted 11/18/2010 6:10 PM (GMT -6)   
Hello all,
I am the Ms. of VtHiker and thank you for all your informative words. He shared your comments as he was so pleased to reach a group of common thoughts. Thanks again. We are in it together and strong (most of the time!). We have been consumed with educating ourselves and trying to make the best decision we can. VtHiker is an amazing individual and will certainly achieve as much success as possible. My sister has melanoma and we've been focused on her for 4 years (she's been stage 4 melanoma for 4 years and is still alive!). So, I (moreso than VtHiker) was floored with the news he now had cancer. I never thought....I'm sure none of you did either. Again, thanks for being there!

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 11/18/2010 8:14 PM (GMT -6)   
Welcome to both of you. I wish more spouses/partners were involved on here.

Sorry to hear about the melanoma. One of our other close brothers on here wife is battling multiple myeloma. This cancer is just not fair.

It is good to hear that you are calm and rational, and looking at all the options. Keep reading and reading. The internet is so great. I can't imagine having PC before the internet.

Good luck on your journey and keep us in loop. Once you decide on your selected treatment option, go, and never look back. Second guessing can be a killer. Hindsight is a luxury we don't have looking forward.
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
1 year psa (364 days) .01
15 month PSA <.01

Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2458
   Posted 11/18/2010 8:31 PM (GMT -6)   
Welcome to the place no one wants to be in. As many have already mentioned, educate yourself during the 30-45 days and make a decision without looking back. I had Gleason 8 and chose surgery only because I wanted to have radiation as a second bullet if surgery didn't do the trick. Your biopsy is not too bad and all choices are available to you. Good luck.
Age: 67 at Dx on 12/30/08 PSA 3.8
2 cores out of 12 were positive Gleason (4+4)
Davinci surgery 2/9/09 Gleason 4+4 EPE,
Margins clear, nerve bundles removed
Prostate weighed 57 grams 10-20% involved
all PSA tests since (2, 5, 8, 11, 15, 18 months) undetectable
Latest PSA test (21 months) .005

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 11/18/2010 8:52 PM (GMT -6)   
Welcome both Hiker and Mrs. Hiker. if you have to join our flock, its a great place to be. please keep us posted
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

fulltlt
Regular Member


Date Joined Nov 2010
Total Posts : 264
   Posted 11/19/2010 7:21 AM (GMT -6)   
Welcome to HW (as it is acronymed).

I made my decision based on what quality of life I would have following the treatment I chose.

Don't get fooled into believing myths that doctors will tell you as the gospel truth.
Know the facts and question them on what they tell you.

I read a lot of books , and on the internet and talked to two of the guys at church that
had been diagnosed with prostate cancer, one had seeds and other other had surgery.

In the end I chose radiation because I knew what the cure rates were and what the
quality of life afterwards would be.
age 57 2/2010
PSA 8.2 2/2010
Gleason 3+4=7
second opinion on pathology from John Hopkins 4+4=8
PSA 15 4/2010 just before EBRT began
5 weeks EBRT 4/2010-6/2010 at Copley Hospital in Aurora, IL
91 implants of palladium 103 7/2010 at Chicago Prostate Center, Westmont, IL
PSA 3.97 10/2010

TinFoilHat
Regular Member


Date Joined Sep 2010
Total Posts : 51
   Posted 11/19/2010 7:40 AM (GMT -6)   
goodlife said...
Once you decide on your selected treatment option, go, and never look back. Second guessing can be a killer. Hindsight is a luxury we don't have looking forward.


This may be the best piece of advice you'll receive.

My 2 cents, and worth every penny.
Jeff

Age: 49 (09/61)

PSAs: 12/08 - 1.8, 12/09 - 2.5, 6/10 - 3.9, 8/10 - 5.7

Biopsy 8/10: 14 samples, 5 positive, Gleason: 3 + 3

open RP 9/23/2010

Post Op Path: Organ contained, Gleason 3+3, nerve bundles spared, negative margin.

6 week post-op PSA < .01

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4110
   Posted 11/19/2010 9:16 AM (GMT -6)   
Welcome to HW, Really nice to see the couple team in the battle. It sure makes this a bit easier to have our loved one at our side in the journey. Do not hesitate to ask questions. No one can tell you which treatment fits you best the 2 of you must make that decision.

I think you will find that the gang here are just the best in the world. My wife and I have met and visited with many of the members on HW and have not been dissapoied.

Best of luck on your discovery of the new you.

Cajun Jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1% cancer core
10/08 Nerve-Sparing open radicalSurgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clea
r3 month: PSA <0.1
19th month: PSA <0.1
Only issue at this time is ED

Alegar
Regular Member


Date Joined Oct 2010
Total Posts : 91
   Posted 11/19/2010 11:20 AM (GMT -6)   
Mr and Mrs VT:

So far you have made THE BEST single decision that I did not make until my postop: to find this group on HW.

I second the opinion to get a second opinion...and possibly a third. I did and went forth feeling more confident of what I was dealing with. We all are here with you.

Alex
Diagnosis:
July 1, '10
PSA 3.88
Gleason 3+3=6
2 out of 12 samples positive

Solution:
DaVinci Oct 1 '10, UNC Chapel Hill
Cath/JP Drain out Oct.16, '10

Personal Statistics:
Age: 54
Weight: 184 lbs.
Height: 6 feet

AIRBORNE ALL THE WAY!

English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2216
   Posted 11/19/2010 11:32 AM (GMT -6)   
Welcome on board to both of you,

The above thoughts posts etc cover most of the ground.
All I would add is that you may find that it is not just a difficult cvall, but that it is even hard to work out how to make your mind up and even when you do make a decision you may still worry that it was not the right one. So don't leave any questions unasked, or any thoughts unsaid at this stage.
We are all different, even before we get this nasty diagnosis thrown at us, and the disease and its course is never exactly the same in any two of us, so don;t get fooled by all the statistics - remember that they are merely numbers, averages and means.

You are an individual.

Alf
Born Jun ‘60
Apr 09 PSA 8.6
DRE neg
Biop 2 of 12 pos
Gleason 3+3
29 Jul 09 DaVinci AVL-NKI Amsterdam
6 Aug 09 Cath out
PostOp Gleason 3+4 Bladder neck & Left SVI -T3b
No perin’l No vasc invasion Clear margins
Dry at night
21 Sep 09 No pads daytime
17 Nov 09 PSA 0.1
17 Mar 10 PSA 0.4 sent to RT
13 Apr 10 CT
28 Apr 10 start RT 66Gy
11 Jun 10 end RT
Tired
BMs weird
14 Sep 10 PSA <0.1
Erections OK

kcragman
Regular Member


Date Joined May 2008
Total Posts : 240
   Posted 11/19/2010 11:40 AM (GMT -6)   
Lots of good advice here. Just remember as you obtain your 2nd or 3rd or however many opinions you get - if you go to a surgeon, they are generally going to recommend surgery. If you go to a radiologist, they are generally going to recommend radiation. So collect your information, and make the best choice for you.

Good luck,

kcragman
Age: 54; 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. Doctor: Jason Engel

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 - May 2010: PSA testing. Undetectable thru 2 years.

VtHiker
New Member


Date Joined Nov 2010
Total Posts : 2
   Posted 11/21/2010 3:42 PM (GMT -6)   
Just want to thank everyone for their feedback. Everyone is so kind with their words and it is certainly helpful as my wife and I sort through the treatment options. Not an easy process. 

Herophilus
Veteran Member


Date Joined Sep 2009
Total Posts : 663
   Posted 11/21/2010 4:35 PM (GMT -6)   
VT's
Welcome, and Best of Luck to you'all. I believe that Jazz has it all nicely covered. Do your homework, make a decision, and give it heck!
Hero
Age 51 PSA 6.8
Bxy 10 of 12 Cores positive for Gleason 6. up to 75%
Robotic surg 11-02-09
Post op path. 20% neoplasm;4+3=7 Gleason
All nodes (14) and other related tissue negative for cancer
No EPE
Post op PSA x 3, all <0.01

mycroft
Regular Member


Date Joined Oct 2010
Total Posts : 54
   Posted 11/21/2010 5:19 PM (GMT -6)   
Hiker: Welcome to the club no one wants to join.

Here is my post for the new folks, which I believe you will find to be useful:

Welcome to the club no one wants to join.

I have some suggestions that will help to make well-informed decisions.

Anecdotes contributed by other patients can be interesting, but should never, ever, be relied upon as authority for one's own decisions. In other words, what helps me might harm you and vice versa.

"Find people who are more interested in helping you to learn than teaching you what *they* think you need to know."
-- Robert Young, PCa Mentor
Phoenix 5

There is a lot to do.

(1) If applicable, I recommend having the biopsy specimens examined by
a pathology lab that specializes in prostate cancer (PCa). Everything
that is done from here on depends upon the accuracy of the Gleason
scoring. Here is a list of such labs:

Bostwick Laboratories [800] 214-6628
Dianon Laboratories [800] 328-2666 (select 5 for client services)
Jon Epstein (Johns Hopkins) [410] 955-5043 or [410] 955-2162
Jon Oppenheimer (Tennessee) [800] 881-0470
Scott Lucia (303)724-3470

This is a "second opinion" and should be covered by insurance/Medicare. The cost, last I heard, was about $500. More if further tests, which might be prudent, are ordered.

The chosen lab can give instructions on shipment arrangements.

In civilized jurisdictions, those specimens are the property of the
patient and not the medic, not the lab. Sometimes it is necessary to
educate them on that point.

(2) The authoritative website of the Prostate Cancer Research
Institute (PCRI) at http://www.prostate-cancer.org/pcricms/
is an excellent beginning.

See also http://www.prostate-cancer.org/pcricms/node/126 if newly diagnosed.

Some access to medics who specialize in treatment (tx) of PCa are listed via
this portal: http://www.prostate-cancer.org/pcricms/node/38

If a particular medic is not suitable due to distance (but there are men who travel thousands of miles for treatment) or otherwise, there is no harm and much possible gain in simply asking for a referral.

There are also men whose primary medic is some distance away, but who receive their routine treatment (tx) near home.

(3) I heartily recommend this comprehensive text on PCa: _A Primer on Prostate Cancer_ 2nd ed., subtitled "The Empowered Patient's Guide" by medical oncologist and PCa specialist Stephen B. Strum, MD and PCa warrior Donna Pogliano. It is available from the PCRI website and the like, as well as Amazon (30+ five-star reviews), Barnes & Noble, and bookstores. A lifesaver, as I very well know.

(4) Personal contact with other patients can be very helpful. Local chapters of the international support group Us Too can be found via
their website at http://www.ustoo.com/chapter_nearyou.asp

Regards,

Steve J

"Empowerment: taking responsibility for and authority over one's own
outcomes based on education and knowledge of the consequences and
contingencies involved in one's own decisions. This focus provides the
uplifting energy that can sustain in the face of crisis."
--Donna Pogliano, co-author of _A Primer on Prostate Cancer_, subtitled
"The Empowered Patient's Guide."

Highwayman
Regular Member


Date Joined Sep 2010
Total Posts : 148
   Posted 11/21/2010 9:49 PM (GMT -6)   
VT She and He,
study a little, breath , and study some more, take a break and love each other, then breath. You two will come to the right desision for the both of you.
Best wishes for a good outcome on your journey.
Mike
Age 48 w/diagnosed
10/06 PSA 3.0
11/06 PSA FREE %13.2
10/07 PSA 3.4
12/07 Biopsy-neg
1/09 PSA 4.6
6/09 psa 5.8
2/10 psa 8.7
7/10 PSA 10.8
8/2010 3rd biopsy GG 3+3=6, one of eight cores -2%
Lap 10/22/10 Dr. Troxel
Path- Neg Margins, Gleason 6, Nerves spared, 85 gm
Cath out Nov 2, Ohh! lots of pads.
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