Newbie feeling lost & confused

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

New Member

Date Joined Feb 2010
Total Posts : 2
   Posted 2/15/2010 6:22 AM (GMT -6)   
I'm really glad that my wonderfully supportive wife found me this blog. I am 59, have a too-sedentary lifestyle, and have had various minor ailments (and some depression) over the last two or three years. Substantial cancer history in my family. Was diagnosed with PC very recently (Gleeson 6, PSA 5.1) after reporting symptoms of aches in right groin, right thigh, and lower back. I'm finding it difficult to navigate a course through all the conflicting advice about what to do next: surgery seems better than radiotherapy, but the choices within surgery are very confusing. "My" urologist advocates open surgery, which of course is his specialty, and says the results for Da Vinci are not nearly as good as the hype suggests; but there's plenty of evidence to the contrary. The NYTimes article of 2.13.10 seems to confirm that objective evaluation of the options is close to impossible. I feel that whatever happens this is a turning point in my life, leading to a general decline; I feel lost and depressed. Is this just self-pity, and if so, how do I kick the habit?


Regular Member

Date Joined Dec 2009
Total Posts : 214
   Posted 2/15/2010 7:01 AM (GMT -6)   
Welcome to the club that no one wants to belong to. So glad your wife found this forum.
The few stats that you provide seem to indicate that your PCa is similar to mine.

Once I received my dx of PCa, I took my walking very seriously and walked very briskly for an hour each day. Walking is easy to do and really clears the mind, particularly if you are down in the dumps.

With walking and portion control, I lost 15 lb between the dx and my surgery which I believe really helped in my recovery.

First I had to decide on AS or an immediate treatment. You will find a good deal of debate about that here!

I think way too many surgeries are being done and that AS is, if recommended as an option by your doctor, certainly an option that should be considered seriously.  There is one caveat however and that is you have to get past the psychological barriers!!
With regard to myself, the question about AS was whether I could deal with the psychological pressure of letting the identified cancer stay in me when the opportunity to have the stuff I knew about removed was available. I knew that I personally could not deal with that so I chose not to follow the AS route.

After deciding not to go the AS route, I considered the other options.  My oncologist had outlined all of them.  His recommendation was that for my age and health, surgery was recommended.
I did extensive research.  Sometimes I thought my mind would explode with all of the information.  In the end, in my mind it came down simply to what I believed was the best option for me.  Removing the prostrate would give me the best chance of being cancer free.  Other options would still be available if some cancer reamained after surgery.
It was surgery first, then I'll look at other options if need be.
As for the type of surgery, my oncologist said that he could see better with DeVinci but with my situation he liked the fact that he could feel during surgery.

I elected open surgery. It was very important to me that I had total confidence in my doctor. I did not seek a lot of opinions because I was lucky enough to have one of the top oncologists in our country located in a hospital 15 minutes from home and after talking to him for 20 minutes, I knew this was the person I wanted to do my surgery.
From what I have read, I believe that at this time, it cannot be predicted that an individual will have better outcomes with one or the other surgery. To me each of these surgeries is very much an individual experience and you cannot rely on what happened to others to be an indicator of what will happen to you.

This post is way longer than I intended.   Today is a holiday for us (Family Day) in Ontario, Canada and I am not out doing my usual volunteer work.  I hear the family stirring so I had better end this.
Each individual's PCa journey is unique.  As Sonny said in an earlier post today, there will be bumps and flat tires during the journey.  Individual bumps and flat tires cannot be predicted ahead of time and so we make our decisions based on what we have learned and what we feel is best for us as individuals.
I hope that you will continue to post with us, let us know about the bumps and flat tires.  I also hope that you will find some comfort and useful information here.

Age:  63 
Biopsy: May 09 showed 2 of 12 cores positive for prostate cancer -- 1 at 5% and 1 at 25%.  Cancer indicated as non aggressive.  Gleason Score: 3+3.
RRP on Oct 23/09 in London, Ontario.  Excellent surgeon. 
7 Weeks Post Op -  The fears I had about bad things about the operation and recovery did not materialise except of course ED!!.  Otherwise, everything went very smoothly.  Incontinence not a problem.  Wear a pad when out just in case. Pain was never a problem.
Pathology:  Unremarkable 
First followup PSA and Visit: Feb 11/10 - 0.0.
Next PSA May
Next doctor's visit in 6 months      

Post Edited (skeener) : 2/15/2010 6:37:03 AM (GMT-7)

Cajun Jeff
Veteran Member

Date Joined Mar 2009
Total Posts : 4068
   Posted 2/15/2010 7:09 AM (GMT -6)   
EarlyBird, I was 57 when Dx, and decided on open surgery. Not sure about if open or DeVenci is better. I suspect the skill of the Dr is more important. I also asked abut Robotic and my Uro said he only did open but would gladly refer me to a Dr that used the Robot and we talked about the two procedures. With that conversation I was comfortable with open.

You have time to make a decision on your own. Do research and get a second openion.

If you have specific questions you can e-mail me. My e-mail is open.

Jeff T
Cajun Country
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.
15 months out injections Caveject (success)

Steve n Dallas
Veteran Member

Date Joined Mar 2008
Total Posts : 4818
   Posted 2/15/2010 7:12 AM (GMT -6)   

Hey Earlybird - glad you found us...

Have you been dealing with depression for longer then the last couple of years? If so - I'd think you'd want to get more control of that first. Then as you get stronger mentally you can wage the war against PC.

Age 54   - 5'11"   205lbs
Overall Heath Condition - Good
PSA - July 2007 & Jan 2008 -> 1.3
Biopsy - 03/04/08 -> Gleason 6 
06/25/08 - Da Vinci robotic laparoscopy
05/14/09  - 4th Quarter PSA -> less then .01
11/20/09 - 18 Month PSA -> less then .01
Surgeon - Keith A. Waguespack, M.D.

Veteran Member

Date Joined Jan 2009
Total Posts : 2210
   Posted 2/15/2010 7:23 AM (GMT -6)   
Early Bird,
Olease do your homework and make it your call, not your urologist call. Cant tell you what to do, nor would I. But as we say on here once you make it, dont look back and move forwar. This has not been the end of my life, and it a lot of ways it has created new beginnings. Wish there had been an easier route but these were the cards I was dealt. Emotional and physical roller coaster indeed. But my grandaughter was born with a cleft palate and has four times the surgeries that I have had. So when I get down, and I do sometimes, I think of her and find my strength once again. Welcome and keep us posted.
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
Margin slightly involved
2 pads per day, 1 depends but getting better,
8/5 1 depend at night only, now none
 started ED tx 7/17, slow go
Post op dx of neuropathy
3 months psa.01, 6 month psa.4, 6 1/2 month psa.5
Starting IMRT on 1/18/10
Great family and friends

gold horse
Regular Member

Date Joined Nov 2009
Total Posts : 360
   Posted 2/15/2010 7:51 AM (GMT -6)   
Hi Early Bierd,and welcome to the club.It is very normal to feel this way when your dr tell you you have pc,but their is not the end
thanks God your wife found us and in here you will find more information than most doctor can give you.In here you have any procedure that can be done,some positive and negative experince to that particular procedure and a lot of brother that are here to help you.when I was 46,pc hit me and did not find any forum only me and God,and here I am almost five years later and still will be find start doing home work and relax.tongue
PSA 6/05=0.04,0.04,0.04,6/06,0.04,0.04,0.04,6/07,0.04,0.04,0.04,6/08,0.04,0.04,1/09

Ed C. (Old67)
Veteran Member

Date Joined Jan 2009
Total Posts : 2457
   Posted 2/15/2010 9:13 AM (GMT -6)   
Early Bird,
This is a confusing time for you as it was for most of us on this forum. Get a couple of opinions on what options you have to fight PC. If you decide to have surgery then don't look back. Both Robotic and open surgery offer similar results as long as te doctors performing the surgery are skilled. If you choose robotic surgery then it is important to find a doctor that has done at least 500 of them. Good luck.
Age: 67 at Dx on 12/30/08
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
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 2/9/09 Dr Fagin, Austin TX
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Posterior lateral lesions measuring 1.5 x 1.4 x 1.0 cm showing focal capsular penetration over a distance of 3mm in circumference.
Prostatic adenocarciroma accounts for approx. 10-20% of the hemisphere.
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx, Negative margins
seminal vesicles clean, lymph nodes: not dissected
continent after 4 months
8 weeks PSA test 4/7/09 result <0.1
5 months PSA test 7/9/09 result <0.1
8 months PSA test 10/9/09 result <0.1
11.5 months test 1/21/10 result 0.004

James C.
Veteran Member

Date Joined Aug 2007
Total Posts : 4462
   Posted 2/15/2010 10:44 AM (GMT -6)   
Early Bird, welcome ot the forum, not much I can add to what the guys have said, so find a chair and stay with us. Keep us informed of your decisions as you go along, and don't hesitate to ask questions. We got the biggest bunch of know-it-alls,,,,err....self educated guys around.... smilewinkgrin
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
32 mts: PSA's: .04 each test since surgery, ED Continues-Bimix .3ml PRN or Trimix .15ml PRN

New Member

Date Joined Feb 2010
Total Posts : 2
   Posted 2/15/2010 9:52 PM (GMT -6)   
THANKS, everybody, for your great support. Each of your replies has been a huge help and I feel much better at the end of the day than I did at the beginning of it. To keep this short: I walked to work today (6 mile round trip) and vowed to look after my general health better (thanks Skeener, and I hope you've had a great holiday), and have booked to see a very experienced Da Vinci surgeon for a second opinion. Thanks to you guys I have a new determination to see this thing through and to come out smiling (OK, and wincing...)


Veteran Member

Date Joined Feb 2008
Total Posts : 1858
   Posted 2/15/2010 10:50 PM (GMT -6)   
Welcome to Healingwell. The first thing to take in that with a Gleason 6, PSA of 5.1, and if say, 2 of your 12 cores were positive with a small percentage of tumour in each core, you would be a candidate to do nothing other than active surveilance. I say this not as a suggestion as what you should do but rather to give you an indication that there is no need to panic and so take plenty of time to make a decision. If you elect to have active treatment there is surgery (open and robotic), external radiation, brachyatherapy, HIFU and Cryo (freezing) and probably a couple of others. Don't allow a doctor to tell you what treatment to have(although take on board any recommendations) ,especially if that is the type of treatment he does. Take your time, research all the options and learn all you can about the disease. You can and will become fairly knowledgeable about what you face and then and only then can you decide with confidence what is best for you. You could not go to a better place and find a group of more helpful guys (and some gals) who are all willing to help.

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
PSA December 09 <0.01

My Journey:

Regular Member

Date Joined Apr 2008
Total Posts : 270
   Posted 2/15/2010 10:58 PM (GMT -6)   
Just to add. I think you are wise in getting several opinions from doctors - then make your choice. I think you will find from all the guys on this blog throughout the world that it is not the end of the world. It is a change, and none of us would choose it, but thank God there are treatments. You are dealing with it, and you will be fine. Blessings!

Age 63
Original data - pre-operation PSA: 5.2, T1C clinical diagnosis, Needle biopsy - 10 cores, Gleason 3+4 in 1 core (40%), 7 cores Gleason 3+3 ranging from 5% to 12%, All scans negative.
Lupron administered 4/9/2008 for 4 months (with idea I would undergo external beam radiation followed by seed implants - then I changed my mind). Robotic DiVinci surgery, Dr. Fagin (Austin) 5/19/2008, Post operative pathology - pT2c NX MX
Gleason 3+4, Margins - negative, Extraprostatic extension - negative,
seminal vesicle invasion - uninvolved.   PSA's 7/12/2008, 10/30/2008, 4/03/2009, 7/6/2009, 10/8/2009 - all undetectable 


Elite Member

Date Joined Oct 2008
Total Posts : 25355
   Posted 2/15/2010 11:01 PM (GMT -6)   
Welcome to HW,

Not much I can add, you have already been given some great general advice about your situation. At this point, is all about educate, educate, and educate.

Hope you continue to post, and ask any thing you want, anytime you want. We are here for 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
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12
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 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12 in at the same time, 2/8-Cath #11 out - 21 days

Regular Member

Date Joined Apr 2006
Total Posts : 36
   Posted 2/16/2010 10:31 PM (GMT -6)   

Early Bird,

Hopefully things have settled down a bit for you.  Things do tend to spiral after being diagnosed and I for one searched for information until it consumed me.  You have time to research and speak to doctors.  I chose robotic for numerous reasons...the most important was that my Dr. could stitch completely around the ureatha (somewhat like a whip stitch) instead of the usual 3 or 4 stitches.  Also, the end tools of the robot he worked with are about 2 millimeters long...considerably smaller than a finger.  He did the nerve sparing and I have to say things work ok and I use cialis at times. 

Try the Livestrong site to get an's free just pay shipping.  Log EVERYTHING!  Too often medical staff can be overworked, tired, etc and can forget things.

Good luck and kudos to your wife for being proactive!


Age: 43 years old
Oct 2005 PSA:  3.6
Jan 2006-biopsy 12 needles
Feb 17-Diagnosed
-upper right quad positive (3 needles)
Gleason: 3+3
May 2006 PSA: 10.2
June 26 2006 DaVinci Robotic Surgery 
 PSAs nondetectable for 3 years now!! 

Mike H
Regular Member

Date Joined Jan 2010
Total Posts : 72
   Posted 2/16/2010 11:41 PM (GMT -6)   
Early Bird,

Welcome, and sorry to see you here. Be glad your dealing with this at 59. I had a radical prostatectomy back in October 2009, at the ripe old age of 49. What I wouldn't have given to not deal with this for another 10 years.

All the other guys here have great advice and YOU need to decide what works for you. I decided to do seeds and then after meeting with the surgeon, I was convinced that surgery made better sense for lots of reasons and in my case age was a big factor. I was too young to not do my best to eliminate the cancer completely.

My urologist insisted I see a radiation specialist so I could make an informed decision. I had made up my mind to have the surgery but the urologist had a point. Why not listen to the other guys sales pitch so to speak. So for the cost of a $20 co-pay off I went to see a highly recommended specialist and not only was he AWESOME, but he gave me great advice too.

I asked the doctor "What would you do if you were me?" He replied "Mike that is really an unfair question. I'm older than you, I'm not married to your wife. I didn't raise your children, I don't have your mortgage and so on and so forth." He went to tell my that surgeons want to cut and the radiation guys want to do radiation. He told me he felt confident that I was an excellent candidate for his services and that he would do a combination of seeds and external beam radiation.

To this point I felt he was honest and objective but still felt surgery was the right thing for me and I remained unchanged in my thinking and then came the big payoff for my $20. He said: "Mike - I'm totally confident I can give you an excellent result and I'd be happy to take you on as a patient if you'd like to move forward with me", and then came the but............
He continued "but....... if I were you I'd have the surgery".

How honest and refreshing and wonderful to get an endorsement of my decision from a guy who in the end would see no benefit or financial gain from his excellent advice. Coincidently my dad, 25 years my senior, was diagnosed with PC the week before me and I said "Dad you gotta meet this guy" He was a straight shooter and in the end my dad did follow his protocol, but dad is older and has different issue than I do.

End of day every one of us is different and you need to consult with the best doctors you can find and if your lucky you'll find guys like I did. The folks here on the HW forum are also an excellent resource. In the end my surgeon who does robotic surgery preferred a traditional laparoscopic approach over the robot for my set of circumstances. I trusted the surgeon and after that I want him to use the tools he's most comfortable with. I picked the surgeon, after that I let him pick the tools.

14 weeks post up I'm 95% or more back to where I was with only the most mild ED that I'm told could take months for the nerves to recover and for me to return to the way I was. For now, a quarter of a viagra and I'm good as new until the time I look forward to not needing it anymore.

Best of luck and e-mail me directly if you'd like to talk more. We all get thru this.

8/12/09 Diagnosed at 49 years old. DOB. 6/11/60

10/29/09 Surgery at Memorial Sloan Kettering Cancer Center, NYC
11/25/09 Catheter Out (4 weeks)
99% continent the day the catheter came out
Wore the pads for 2 weeks to be safe but had minor drips at most.
12/16/09 First PSA (7 weeks) < .05 Undetectable

2003 Biopsy Negative
7/23/09 Biopsy Positive. 10% cancer in 1 of 12 cores. Gleason 3+3=6.

Post Surgical Pathology:
Gleason 3+3=6
Tumor confined to prostate
Seminal vesicles not involved
Bladder neck not involved
Surgical margins free of tumor
Lymph nodes not involved

Post Edited (Mike H) : 2/16/2010 10:50:48 PM (GMT-7)

Regular Member

Date Joined Jun 2009
Total Posts : 130
   Posted 2/17/2010 12:31 AM (GMT -6)   
As others have said, 'Research your options.'

I'm of the mind that the more doctors and opinions you get, the better. Knowledge is power and the more knowledge you have, the better you will be in making a decision that will fit your lifestyle.
Age: 53 6' 0" Weight: 170 Caucasian

Rising PSA over the last six years (from when I started being tested) from 3.9 to 5.2 to 4.6 to 4.5 to 4.9.

DX with PC in January 2009 after biopsy. Bone scan--negative

Consulted Cedars-Sinai Beverly Hills urologist--recommended surgery
Consulted Cedars-Sinai Beverly Hills radiologist--recommended IMRT
Consulted San Diego Cyber-Blade doctor--recommended treatments
Consulted Long Beach radiologist--recommended IGRT
Consulted Loma Linda radiologist--recommended Hypo-fractionated Proton treatments

Insurance approved any treatment I wanted.

Consulted Marnia del Rey urologist Dr. Scholz.
Dr. Scholz referred me to Dr. Bahn for a Color Doppler test.
Scholz and Bahn recommended Active Surveillance, some diet changes, and steady exercise.

I am currently on Active Surveillance.

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, March 17, 2018 12:40 AM (GMT -6)
There are a total of 2,940,484 posts in 322,665 threads.
View Active Threads

Who's Online
This forum has 161096 registered members. Please welcome our newest member, syghnvyhdy.
278 Guest(s), 2 Registered Member(s) are currently online.  Details
GloforHim, BrookieGirl