New guy saying hello

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

njbmwgs
Regular Member


Date Joined Apr 2011
Total Posts : 47
   Posted 4/19/2011 9:32 PM (GMT -6)   
Hello forum!!

Well, I can't say that I'm totally happy to be here, but I am certainly glad I found such a caring and helpful board to offer support and share their experiences. Please don't take offense!

Ok, here it goes...

42 years old. No family history of any cancer whatsoever. Diagnosed on 4/6 w/PC after rising PSA (recent in 2/11 to 4.8) and a positive biopsy. 5 out of 12 sticks were positive, with 4 showing a Gleason 6 (3+3) and 1 with a 7 (3+4) with perineural invasion. Just had my bone scan, PSA and pelvic CT on 4/15. Will get full report with my uro on Thursday night. Fingers crossed that everything else came back negative.

So, like most of you after diagnosis, I've been doing a ton of research, and investigating all my options. I've read about 4 books on PC including "Invasion of the P snatchers" and several others. I've found them quite educational and a tad bit confusing as well. I now know why I never went to medical school!

So, in my explorations of treatments, I'm obviously run across RP, radiation and hormones. Have a consultation scheduled w/Dr. Samadi in NY once I meet w/the Uro, and will also look at UPenn Cancer center for proton treatment. Has anyone here had experience w/proton therapies, as I don't see them talked about much, except at brotherhood of the balloon site. It sounds like it has a as good an efficacy as other treatments with limited side effects. Would love to hear from other here who've gone through it.

My biggest concerns are QOL and potential recurrence.

Oh, the best part about this whole process is that I recently was laid off at the end of March. 1 week later I get the news of my PC. Now I'm looking for Dr's AND a job. Not sure how that's going to work out w/various treatment schedules, downtime, etc. Ugh...

wishing you good health,

-Brian

davidg
Veteran Member


Date Joined Feb 2011
Total Posts : 4093
   Posted 4/19/2011 9:43 PM (GMT -6)   
Brian - Dr. Samadi is awesome. He took care of me in January. If you're in the NY area and end up choosing robotic you cannot go wrong. He has tremendous skill and is a lovely caring man.

If you chose other options many here will have great insight for you. I know a great guy in NYC for seeds is also at Mount Sinai, Dr. Stock. He did HT followed by seeds for my boss but my boss had a gleason 8 also.

With your numbers I highly doubt your scans will come back positive. I also had a 7 (3+4). Please let us know.

I don't think AS is a great option at your age and with a gleason 7 but there are folks here who can advise you on that too and perhaps share their perspective with you. Although having read the prostate snatchers book you probably know a lot about it already.

You've found a great forum here and you have a great shot at doing well with your numbers. Please email me (from this board) if you want to know more about my personal experience. (edit) I'm also in NJ, assuming you are by your handle.

Sorry about your job. Looks like the economy is picking up a little now. Hope you can get Cobra coverage.

Post Edited (davidg) : 4/19/2011 8:48:07 PM (GMT-6)


Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 4/19/2011 9:44 PM (GMT -6)   
Hi Brain, well, you've certainly ramped up your stress meter this past month! PCa and laid off all within a week. Geeeeesh!

However, this is a great place to come for PCa advice, as you've found out, and you write so well who knows --- there may just be a job offer lurking in the weeds here as well.

Others far better qualified than I will soon chime in with medical wisdom, but I did want to welcome you, and wish you all the best.

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
From "knock out" to wake up in recovery less than two hours.  Actual surgery 70 minutes
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
 
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
 
First post op PSA Sept 09  less than 0.02
PSA on Oct 23, 2009 less than 0.02
PSA on Jan 8, 2010  less than 0.02
PSA on April 9, 2010 less than 0.02 
PSA on July 9, 2010 (one year) less than 0.02
  

njbmwgs
Regular Member


Date Joined Apr 2011
Total Posts : 47
   Posted 4/19/2011 9:48 PM (GMT -6)   
Thanks Davidg and Sleepless09,

appreciate the welcome.

Yes, I'm in NJ (hence my board name) and will definitely reach out to you on Dr. Samadi and your experience. Luckily Cobra is available and active. Just worried about all the other bills ;-)

Also, here's a predicament for you guys to ponder... As I'm going through interviews for new jobs - do I or do I not disclose the fact that I have PC and might require some immediate time off to deal with the treatment plan? I've run this buy my friends and former colleagues and get a mixed response. Would love some perspective on guys with PC.

Thanks again,

-Brian

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7085
   Posted 4/19/2011 9:48 PM (GMT -6)   
Brian,
 
As always, we hate to see new members here, but Welcome just the same.
 
Lots of folks will chime in with ideas/suggections as to getting opinions. I will suggest that you look at the top of the forum for the "really useful" thread, which is a conglomeration of experience from all of us.
 
Please get multiple opinions if you can before making any decisions. Your one G 3+4 takes you a step out of the "indolent" category, in my non-medical opinion. I'll suggest you read a book that was linked here in the past from Australia, and focus on the treatment / possible side effects in chapter 6:
 
----

http://purl.library.usyd.edu.au/sup/9781920899684

It takes you to an Australian university for a book some professors have written. Down at the bottom of the text there is a place to click to download the pdf file at no cost. I ran all the requisite security checks at the time, and it came up as legitimate.

I wish someone had given me such a book when I was diagnosed. It should be said that nothing in the book would have changed any decision I made, but some of the information reinforces what I have learned by consolidating many more documents. The data is based on Australia, so there are some skewed numbers regarding DaVinci, as they have very few DaVinci robots there. Chapters 5 and 6 are the highlights of actual treatment choices. I read the whole thing.

Worthwhile read, in my opinion.

- - - 

I'm a surgery guy, so have my bias, but if I can be of any “non-medical opinion” help, ask.

Proton is limited in availability, so there are less posts just by default.

 
 
DaVinci 10/2009
My adjuvant IGRT journey (2010) -
www.healingwell.com/community/default.aspx?f=35&m=1756808

davidg
Veteran Member


Date Joined Feb 2011
Total Posts : 4093
   Posted 4/19/2011 9:52 PM (GMT -6)   
njbmwgs said...
Thanks Davidg and Sleepless09,

appreciate the welcome.

Yes, I'm in NJ (hence my board name) and will definitely reach out to you on Dr. Samadi and your experience. Luckily Cobra is available and active. Just worried about all the other bills ;-)

Also, here's a predicament for you guys to ponder... As I'm going through interviews for new jobs - do I or do I not disclose the fact that I have PC and might require some immediate time off to deal with the treatment plan? I've run this buy my friends and former colleagues and get a mixed response. Would love some perspective on guys with PC.

Thanks again,

-Brian


That's a tough one.

It can really go both ways.

But perhaps you should hold off. If you're going to make a decision soon, you could be out of commission for 6-8 weeks.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 4/19/2011 9:58 PM (GMT -6)   
Brian, welcome aboard.

No offense taken, this is the one club we would rather people not have to join, but delighted you found us.

Sounds like you are already doing your homework and getting opinions and learning what you can about this nasty cancer.

Like you, I was dx with my PC exactly a month to day after I was laid off from perhaps the best job of my life. 2 1/2 years later, still out of work. In my case, not a lack of opportunity, I have had many difficulties in my PC journey, and I am still too disabled to work.

Good luck to you on both fronts. Wishing you only the best.

David in SC
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 margin
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, 2/11 1.24, 4/11 3.81
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 9/10

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7085
   Posted 4/19/2011 9:59 PM (GMT -6)   
While I was typing my welcome "first" post, about half the board chimed in -
As to the job, it is dangerous turf. If you say too much, you may drop off the consideration list, but if you hide something significant, it may bite you later. My personal opinion would be to be extremely cautious.
 
With any insurance, it is most important to call for pre-approval on everything, and work extra hard on being sure that doctors and facilities are "in-network" wherever possible. Ask for written confirmation of all discussions with the insurance company co-ordinators, and keep the paperwork.
 
 

Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 4/19/2011 10:03 PM (GMT -6)   
Hi Brian, there are many good strategies for dealing with the external world. Two are; a) you play all your cards close to your vest because the world is a hostile place and if the "enemy" has knowledge they'll use it against you, and b) you share openly with all because people are basically good and the more they know about you, the more they can help you.

The trick, of course, is a balance between "a" and "b" and then making adjustments for specific situations.

I'd suggest that you not bring it up in a first interview --- unless it just seems the right thing to do with a particular person --- but not go beyond a second interview without putting it on the table. Also, before putting it out, I think it would be better to know exactly what treatment you're going to do and what time impact that will have on your availability.

Also, don't let a desire to take a "perfect" job influence your treatment decision. Surgery may require a longer time off, radiation may mess up part of a day for weeks --- go for the treatment you feel is right for you, not the one you think will fit best with a job.

Sometimes the wisdom of my advice amazes even me --- and I'm used to my wonderfulness (and modesty.)

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
From "knock out" to wake up in recovery less than two hours.  Actual surgery 70 minutes
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
 
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
 
First post op PSA Sept 09  less than 0.02
PSA on Oct 23, 2009 less than 0.02
PSA on Jan 8, 2010  less than 0.02
PSA on April 9, 2010 less than 0.02 
PSA on July 9, 2010 (one year) less than 0.02
  

davidg
Veteran Member


Date Joined Feb 2011
Total Posts : 4093
   Posted 4/19/2011 10:09 PM (GMT -6)   
Sheldon that was great.
40 years old - Diagnosed at 40
Robotic Surgery Mount Sinai with Dr. Samadi Jan, 2011
complete urinary control and good erections with and without meds
Prostate was small, 34 grams.
Final Gleason score 7 (3+4)
Less than 5% of slides involved tumor
Tumor measured 5 mm in greatest dimension and was located in the right lobe near the apex.
Tumor was confined to prostate.
The apical, basal, pseudocapsular and soft tissue resection margins were free of tumor.
Seminal vesicles were free of tumor.
Right pelvic node - benign fibroadiopse tissue. no lymph node is identified.
Left pelvic node - one small lymph node, negative for tumor (0/1)

AJCC stage: pT2 NO MX

tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2845
   Posted 4/19/2011 10:11 PM (GMT -6)   
Brian -
- sorry about the job and the diagnosis - I lost my job a few weeks before my diagnosis too.
- you have done a lot of research and already have had a lot of support and patient-to-patient information and concern here at HW.
- you will get through this mess and this confusing disease - it is difficult at times to try to balance off long-term and short-term goals -
-right now, my advice is - keep learning - keep listening to your growing awareness about your body - and embrace each day.
-wishing you all the best.
hugs,
BRONSON
Age:55 -gay with spouse of 14 years, Steve -Peterborough, Ontario, Canada
PSA:10/06/09 3.86
Biopsy:10/16/09- 2 of 12 cancerous, 5% involvement -Gleason 7 (3+4)
Radical Prostatectomy:11/18/09
Pathology:pT3a -Gleason 7 -extraprostatic extension -perineural invasion -prostate weight -34.1 gm
PSA:04/08/10 -0.05 -Zero Club
PSA:09/23/10 -0.05 -Zero Club
PSA:03/24/11 -0.02 -Zero Club
PSA:03/24/12- TBA

njbmwgs
Regular Member


Date Joined Apr 2011
Total Posts : 47
   Posted 4/19/2011 10:17 PM (GMT -6)   
Sleepless09 said...
H

Sometimes the wisdom of my advice amazes even me --- and I'm used to my wonderfulness (and modesty.)

Sheldon AKA Sleepless


LOVE it! Thanks, Sheldon. Just the smile I needed tonight. smilewinkgrin

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 4/19/2011 10:44 PM (GMT -6)   
That was pretty choice, Sheldon, I can feel your glow from South Carolina
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 margin
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, 2/11 1.24, 4/11 3.81
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 9/10

pattersson
Regular Member


Date Joined Apr 2010
Total Posts : 97
   Posted 4/20/2011 12:35 AM (GMT -6)   
Hi Brian, glad you found the forum.

I had pretty similar numbers, age and all. I went the RP route which turned out ok for me. It must be pretty stressing to learn about cancer and loose a job at the same time. However, things will get better.
Radical prostactemy 10/2006 @42, PSA 3.9, Gleason 3+4
PSA <0.2 2006-2009

PSA 0.14 01/2010
0.07 05/2010
0.06 10/2010

Gleason 6
Veteran Member


Date Joined Mar 2011
Total Posts : 876
   Posted 4/20/2011 7:46 AM (GMT -6)   
I'm in a similar situation . I just had my first meeting after having my biopsy and bone scan with my urologist last week. I am lining up a second opinion at the Mayo. I want to look at all my options. I guess that is the good news that you have options and that's the bad news too. Just take your time and be comfortable with whatever you decide. It's a lot to take in. You will get good advise and opinions here.

As far as your job seeking and disclosing your PC, I would not disclose it. Jobs are just too difficult to get these days and so much competition that I would not want them to select another candidate when you may be the best fit for the job other than having PC. You also don't know what treatment you may decide upon. You may decide on radiation and being out of work may not be a factor. I would not let that influence your decision when choosing your treatment though. I went through this when I was looking for a job two years ago and needed a shoulder operation for a rotator cuff. I was just about to get the operation when I had the interview. I wanted to be up front and say something but I did not say anything. I got the job. After I got the job I said I may need an operation. Turns out I never did have the operation. So, you never know. I say get the job and then deal with it. As hard as it can be, sometimes ya got to think of yourself first.
Age 61
PSA 4.3 9/10
PSA 5.5 2/11
PSA 7.1 3/11
Template Biopsy 6 pos out of 40 3/25/11 GS 6 (3+3)
CT bone scan neg
6/18 areas positive - 2 in left base, 4 left apex. 6/40 cores pos. 33cc.
Stage T1C
Uro said 2 in left base, 4 left apex, but looking at the path report, I see:
L apex anterior, L apex mid, L apex posterior, L apex lateral, L base mid, L base lateral

DaSlink
Veteran Member


Date Joined Feb 2011
Total Posts : 713
   Posted 4/20/2011 9:17 AM (GMT -6)   
Brian;
Welcome to the club that no man wants to be in! As you can see,there is a few of us that were either unemployed at Dx,myself included,or shortly after Dx.
I really have no advise to give you on the job front,since I get my jobs through a hiring hall. But best of luck to ya cause I know things are tough. Sheldon's advise seems to be the wisest on that subject.It is a dicey situation at best.
Keep us informed and ask all the question you need to here. These guys and a few gals,are great to talk too.
Every minute you fish or ride,adds an hour to your life!

Age 52 Dx age 53 daVinci surgery
prostate volume 32 grams
Biopsy 12 cores with 7 positive
Gleason score of 7
1st PSA 38.7 10/05/2010
2nd PSA 49.9 11/23/2010
CT neg.
BS Negative
RRP on 01/25/2011
PT3a -40% involved
margin involved-Left anterior
lymph nodes -clear
1st post op PSA-0.26-03/16/11

JoeFL
Regular Member


Date Joined Oct 2009
Total Posts : 420
   Posted 4/20/2011 11:06 AM (GMT -6)   
Welcome Brian.

Tough call on the disclosure question....can't add anything to Sheldon's post.

You will get a lot of different perspectives here which will help you make a treatment decision. I actually changed my mind on treatment after spending some time here. Learn all you can and ask a ton of questions....particularly about side effects.

Best wishes on your journey.

Joe
Age 68 PSA 4.5 Biopsy 9/4/09 Bostwick Labs 5 of 8 sections (5 of 11 cores) positive-Gleason 3+3=6 Stage T1
BT on 12/11/09 (84 seeds of Palladium 103) Home same day/no catheter. Some burning, frequency, urgency for 6 weeks. No incontinence, mild ED. 25 IGRT sessions ending 3/22/10 - some fatigue until 30 days after last treatment. PSA as of 4/14/11 - 0.1

njbmwgs
Regular Member


Date Joined Apr 2011
Total Posts : 47
   Posted 4/20/2011 11:12 AM (GMT -6)   
Thanks for the kind welcome guys.

I'm surprised that so many others were Dx and then lost their jobs, or were unemployed.

I think I'll keep the PC private on the job front until I get hired and determine the best course of treatment for my condition. Then I'll take it from there.

As they say, the Big Man (Clarence Clemons for some of us) never gives you more than you can handle. One day at a time!

in good health,

Brian

Burlcodad
Regular Member


Date Joined Nov 2009
Total Posts : 254
   Posted 4/21/2011 3:41 PM (GMT -6)   

Hi Brian

As a fellow NJ resident and huge Bruce fan , love the Big Man reference to CC.

If you are looking for an opinion on surgery, I highly suggest that you consider making an appt with Dr David Lee at U of P/Penn Presby  .  He did my surgery as well as a few others on this forum and I cant say enough good things about him.

Best of luck

Ray

 

 

 

 

New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, September 24, 2018 12:06 PM (GMT -6)
There are a total of 3,006,078 posts in 329,299 threads.
View Active Threads


Who's Online
This forum has 161823 registered members. Please welcome our newest member, Eclipse900.
273 Guest(s), 8 Registered Member(s) are currently online.  Details
NicHostetler, Youngguy90, TruthSeekerSam, HeartsinPain, GoBucks, AZdiane, zack36, BillyBob@388