Thanks for educating a recent diagnosed.

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brazos09
New Member


Date Joined Nov 2009
Total Posts : 2
   Posted 11/16/2009 6:08 PM (GMT -6)   
   I am a newbie and this is my first ever formal entry into any type of forum.  In the past, I was always an observer just trying to  find out (from the people who do get into forums) what the majority think is the best BBQ grill, stereo, power tool or restaurant/hotel-on-vacation etc.  Anyway, here I am at the beginning of a path that I thought I would never have to walk.  I am blessed with a loving wife and children and a strong faith.
    From 10/28/2009 forward, our Google history seems to have the words "prostate cancer" somewhere in all of my searches.  Recently I found this site and started reading the posts.  It has been a true blessing for me!
   No matter what anyone says to me, trying to explain what is going through my head while trying to process all of this information is like trying to explain calculus to a third grader.  However, when I talk to someone who has already walked down this PC path, they are sincerely simpatico -  having made this walk themselves.  So far, the fellow PCs who I have talked to in person have told me their experiences and why they made the decisions that they made.  No one has tried to sell me on their procedure.  That information and this site (and the others) have helped me realize that there is not the one perfect solution.  This site and the posts have truly helped me so much more than the canned information from the professionally prepared websites.
I find that information from one who has "been there and done that" tends to be truthful and reliable, which allows me to at least to see what is ahead and what options I have. 
Thanks for the hard earned (by you) education.
Off I go.
 
AGE 55,  PSA  08/06- 2.4,  09/07- 2.5,  09/08- 2.6,  03/09- 3.0,  05/09- 3.1
BIOPSY results 10/28/09 = 1 of 12 positive, Gleason 6 (3+3) - 25% at Left Medial Mid.
Weighing options - deciding which path to take?


Modelshipwright
Regular Member


Date Joined May 2009
Total Posts : 215
   Posted 11/16/2009 6:19 PM (GMT -6)   
Welcome aboard. You are in the right place and will find lots of support for whatever your decisions are in your PCa journey.

Keep well,
Regards,
Bill

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/16/2009 6:51 PM (GMT -6)   
Welcome Braz, so glad you found us here. I am biased, but this is the best patient to patient prostate cancer forumn and community on the net. Sorry you have PC, but from looking at your numbers, you should be in for a wide range of treatment choices. We have plenty of men that have been through the whole gambit of treatments. open surgeries, robotic surgeries, Radiation alone, Seeds with Radiation, Hormone Treatments, etc.

Please keep us posted and if you need any help, we are here for you, you are now in our brotherhood.

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 sess/72 gys cath #8 33 days, 11/2- SP Cath #9 in place


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 11/16/2009 6:57 PM (GMT -6)   
Braz, Welcome. I think you will find info on many options and allow you to make an informed decision. You will find that we are a group of misfits and are here to help each other.

Jeff T
Jeff T Age 57

9/08 PSA 5.4, referred to Urologist
9/08 Biopsy: GS 3/4=7
10/08 Nerve sparing open RRP- Path Report: GS 3+3=7 Stg. pT2c, margins clear
3 mts: PSA .05 undetectable

10th month PSA <0.01
1year psa <0.01
ED- 5 mg Cialis daily, pump daily, going to try MUSE next. Next step injections.


60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2243
   Posted 11/16/2009 7:13 PM (GMT -6)   
Welcome aboard Brazos. It is a great site and it is wise on your part to talk face to face with others as well. Keep us posted and will hope for a speedy recovery for you once your tx. has ended.
Michael
Dx with PCA 12/08 2 out of 12 cores positive
59 yo when diagnosed
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
Margins not involved
2 pads per day, 1 depends but getting better,
8/5 1 depend at night only
 started ED tx 7/17, slow go
Great family
Michael


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2448
   Posted 11/16/2009 7:26 PM (GMT -6)   
Brazos, welcome to the club. Sorry you have to be here.

I like you found this site as I began my search in July of this year. Found a few others too. By far this is most knowledgeable and support bunch of folks that someone like us could ever hope to find.

So jump on in and ask away. PCa is a path of many roads and sadly there is bound to be someone here that has traveled one or many of them.

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


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7269
   Posted 11/16/2009 7:53 PM (GMT -6)   
Brazos:
 
I'm a math prof.-- I can assure you it is easier teaching Calculus to 3rd graders than walking this path!!
 
I'm pretty sure I'm on the path too. I'm awaiting one more test result before doing the biopsy thing.
 
I'm just curious as to why you even had your biopsy. Your PSAs were not that bad. Did your urologist push for it or did you (or was there a suspicious DRE).
 
Mel
PSA-- 3/08--2.90;  8/09--4.01; 11/09--4.19 (Free PSA 24%), this after 45 days on cipro!
 
History of BPH/prostatitis.
 
Awaiting results of my PCA-3 test which will determine whether a biopsy is in my immediate future


O Buddy Boy
Regular Member


Date Joined Oct 2009
Total Posts : 106
   Posted 11/16/2009 8:10 PM (GMT -6)   
Welcome Braz,

Try the KitchenAid KFRS365tss for outdoor grills.

And really, you gotta get out with more 3rd grade calculus students.

OBB
55 yo
Dx:9/29/09
DRE: Susp
PSA: 3.5
Gleason: 3+4/7
6/12 Cores Positive; Sextants were 1%, 3%, 8%, 15%, 12%, 0%
RALP: 10/09/09
PATH:
Margins: Clear
Lymph Nodes: Clear
Seminal Vesicles: Clear
Gleason: No increase from biopsy 3+4/7
Some perineural and capsule invasion.
T2c,NO,MX
Incontinence: Minor. 1 light pad a day. Some days don't need it.
ED: Natural with encouragement. 20mg Cialis and pump just makes things more fun.


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 11/16/2009 8:24 PM (GMT -6)   
Welcome to the club that hates to welcome anyone.

Your stats put you in the best/worst category. Best because any treatment has a high likelihood of success. Worst because that means that you have a lot of decisions to make.

First, take a deep breath. The word cancer has filled each one of us with unreasoning fear. But of all cancers PC is one of the most beatable.

This board is strong on second (and third) medical opinions, and good doctors will support this. I presume that you are seeing a urologist but you should also talk to a radiation oncologist and perhaps a prostate oncologist. This is the rest of your life we are talking about and being well advised and informed is the first step.

Be sure to involve your wife. I was stupid thinking I had to face this alone like a brave little soldier. When my wife started coming to my appointments things got much better. Two people listen and ask questions much better than one and the sharing of fear diminishes it for both of you.

Read, ask, whatever you need. We will keep you in our hearts and prayers.
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0 - now light pads
6 mo. PSA 0.00 -- 1 light pad/day


itstime
New Member


Date Joined Nov 2009
Total Posts : 3
   Posted 11/16/2009 8:54 PM (GMT -6)   
Like many others, I've been "lurking" for almost a year.  Your post prompted me to respond.  Your numbers and age are almost identical to my husband's - one year ago.  After a year (andl ots of research), I feel very confident in saying that there is no "right" answer to treatment. There is no certain outcome.  We chose the robotic option and the surgery was on 2/13/09 (and yes, that was Friday the 13th).  The recovery was fairly smooth.  At this point, we are fairly certain the cancer is gone.  I guess the bad news is that you don't find out how bad it really is until the darn thing is out and in the lab.  My husband was a T2a with no indication that any of cancer had "escaped".  The pathology was great.  At nine months post op, incontinence is under control (stress leaks only) and ED a work in progress (so far none of the oral meds have worked).
 
There is an excellent post on this site - Things They Didn't Tell Me....
 
My advice - Talk to folks who have been through it (husbands and wives) and pick a treatment and don't look back.

mspt98
Regular Member


Date Joined Dec 2008
Total Posts : 377
   Posted 11/16/2009 9:46 PM (GMT -6)   
I must echo the well informed lady posting above me. I too had a "little" amount of cancer. I had to weigh through all the options. Actually the surgeon who finally did my sugery told me I could wait 6 months and think about it before doing anything at all. I was nervous but I felt my decision was the by far the best one. 14 months down the road I am somewhat disappointed by the outcome. No return of cancer, no incontinence, but no return of normal erections either. I have to use injections for sex. I guess 2/3 isn't bad but I hoped for more. I still would do what I did over again but do consider all the options before doing anything. Consider the watchful waiting, proton therapy, radiation therapy, cryo, and hifu besides surgery. The best of luck to you.........
my age=52 when all this happened,
DRE=negative
PSA went from 1.9 to 2.85 in one year, urologist ordered biopsy,
First biopsy on 03/08, "suspicious for cancer but not diagnostic"
Second biopsy on 08/14/08, 2/12 cores positive on R side, 1 core=5% Ca, other core = 25% Ca, Gleason Score= 6 both cores,
Clinical Stage T1C
Bilateral nerve sparing Robotic Surgery on 09/11/08, pathological stage T2A at surgery
No signs of spread, organ contained,
4 0's in a row now, 14 months out
Incontinence gone in early December '08,
ED remains,  still taking daily viagra for penile rehab, uro said try oral meds and then trimix for sex only now, Peyronie's Disease stabilized, no progression, yay! 


brazos09
New Member


Date Joined Nov 2009
Total Posts : 2
   Posted 11/16/2009 10:23 PM (GMT -6)   
thanks for the kind responses.

compiler
My urologist recommended the biopsy due to the "jump" and as you can tell, I waited over 5 months telling myself that I do not need/want to go through a biopsy. As for me, the biopsy was not as bad as advertised. For whatever reason, I am glad he thought I needed one and now it is done.

itstime
thanks for the post - I will look it up. I think it is the exact type of practical advise that I started looking for after my diagnosis.
As to your suggestion on obtaining a wife's advise/opinion, last night I found a youtube of 2006 local news station's segment about a man's faster-than-normal recovery after robotic surgery. I googled his name and called him out of the blue and asked if the was the same guy - I wanted to see if he liked his surgeon who has been highly recommended. Over a 30 minute phone conversation, his wife gave me as much or more information than he did. Out of the three personal contacts I have had so far, two had wifes that were amazing with the frankness and to-the-point responses that they gave me - both were clearly a team with their husbands. So far, it appears that PCa tends to trump modesty. Both wifes gave me very practical suggestions about before, during and after surgery and recovery.
I can not imagine going through all of this without the support of my wife and kids. One of the three personal contacts told me that he did not even tell his kids, nor his co-workers and employees cause he did not want anyone to know. I told my Sunday School class and knew once I did that, it was out.

mspt98
thanks for the advise. I am getting my slides forwarded to be reviewed by another different urologist group and then a consult by a recommended urologist.
AGE 55,  PSA  08/06- 2.4,  09/07- 2.5,  09/08- 2.6,  03/09- 3.0,  05/09- 3.1
BIOPSY results 10/28/09 = 1 of 12 positive, Gleason 6 (3+3) - 25% at Left Medial Mid.
Weighing options - deciding which path to take?


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 11/17/2009 9:50 AM (GMT -6)   
Brazos,

One of the things I think you will find is that the more we learn, it seems like the less we know. There is so much information and knowledge out there that can seem overwhelming at times.

For that reason, I hope you will stick around and share some of the things you have learned with us. It's kind of like a big potluck.

Good luck on your journey !
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 injections


engineer55
Regular Member


Date Joined May 2009
Total Posts : 121
   Posted 11/17/2009 12:36 PM (GMT -6)   
I was about the same as you, best thing is to let it sit for a while to make the decision that fits best for you. There are several options, they all work pretty good.
Dx'ed 5/08 one core 2%  out of 12  3+3 gleason
DREs all negative
PSA was in the 3-4 range then jumped to 7
I have the enlarged prostate, on the order of 100cc.  After taking Avodart for 3 months  my
PSA was cut in half.
I did Active S for a year but concluded that I didn't want a life
of biopsies and Uro meetings.
DaVinci on 6/24/09  UCI Med Center  Dr Ahlering, long surgery based on size and location
Final was 5% one side all clear, but had a huge 90 grm prostate
Now we work on pee control, ok at night but sitting is a big problem.

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