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JonH
New Member


Date Joined Jan 2009
Total Posts : 12
   Posted 1/1/2009 10:42 AM (GMT -6)   
This is my first post. I am 38 and was diagnosed with prostate cancer in September. Luckily I found out early. My father passed away from prostate cancer when he was 54 so it is a little scary. I am fortunate in that my gleason was 6, cancer in only one out of 12 samples, and my psa was .2. I am having a robotic prostatectomy done on January 21. I am a little nervous but not too bad. I do have a little soreness in my "scrotal region" from time to time. Very minimal though. My urologist told me it was from the biopsy done in September. Any words of advice from anyone would be appreciated. Thank you

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 1/1/2009 10:50 AM (GMT -6)   
Welcome Jon to our merry little band, see you met the entrance requirement with your PC dx. Sorry it had to be that way. I think we are/were all nervous before our respective surgeries, I know I was, as I had 7 weeks warning to get ready, but fortunately (?) I had other major surgeries in the past. I had 3 prostate biopsies over a 15 month period, including the last 2 six weeks apart, I had the same pain in the same area as you described, I believe most would find that normal. I hurt down there up to the very afternoon of my surgery. Sorry about your father, that is so young, but thankful you were dx. at an early stage. Are you sure your PSA was only .2? Did you mean to say 2 or something point 2? You will find a great group of men well versed in all aspects of treatments and recovery and side affects. Just jump right in, ask whatever you want, and if you are scared, don't worry, and if you need to vent, that's cool too. This place was an important part of my life pre-treatment and has been my best place of support post surgery. Welcome again.

David in SC
Age 56, 56 at DX
 
PSA 7/7 5.8, 7/8 12.3, 9/8 14.9, 10/8 16.4
 
3rd Biopsy 9-2008 Positive 7 of 7 cores positive, ranging from 40 - 90%, G 4+3 & 3+4
 
Open RP surgery  November 14, 2008 at St. Francis Hospital, Greenville, SC, Dr. Ronald Smith - Surgeon, Non-nerve sparing, 4 days in hospital, staples removed 11/24/8, Catheter out on 12/15/8 on day 32.  Day 33, urine stopped flowing, new catheter put in 12/16/08, Catheter out 12/29/08.  After 7 hours, complete stoppage again, emergency room put in Catheter #3 early evening of day 45, still 12/29/08. New appt. to see dr. on 1/5/9 as result.
 
Post-surgery Pathlogy Report:
Gleason 3+4=7, pT2c pN0 pMx, Prostate 42 grams, tumor 20% cancer
Contained in capsular, neg. margins apex, bladder neck, right lobe, neg. in seminal vessels and lymph nodes.
 
First PSA Post Surgery  Scheduled now for 2/9/9
 
 


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 1/1/2009 10:52 AM (GMT -6)   
JonH, welcome to the club- that no one wants to join....Your scoring indicates a extremely good chance that the surgery will take care of the cancer. No guarantees, of course, but it looks really good. In the meantime, I have some links to some posts dealing with how to prepare for surgery and such, if you would like them?

One key I have seen repeated here time after time is, make a studied approach to your treatment option decision, then once you choose, don't second guess it, but concentrate on getting ready for it. Your surgery date is close, but there's still time to get more exercise and walking to build up strength and endurance, and to learn how to do Kegals and start doing them often. This might make a big difference in your continence after surgery.
James C.         Age 61
Co-Moderator- Prostate Cancer Forum
4/19/07 PSA 7.6, referred to Urologist, recheck 6.7
7/11/07 Biopsy- 16 core samples, size of gland around 76 cc. Staging pT2c
7/17/07 Path report: 3 of 16 PCa, 5% involved, left lobe , GS 3/3:6.
9/24/07 Nerve sparing Open Retropubic Radical Prostatectomy
9/26/07 Post-op Path Report: GS 3+3=6 Staging pT2c, 110gms, margins clear
16 mts: ED- 50 mg Viagra 3X week, pump daily,Trimix .35ml 2X week continues
Post Surgery PSA's: 3 mts-.04, 6 mts.-.04, 9 mts.-.04, 1 Year-.02.


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 1/1/2009 11:27 AM (GMT -6)   
You may have more time to consider your choices, but it is yours to decide when, how, whom etc. In your case because of age probably sooner is best scenario (I don't claim to know for absolute fact).
My brother was diagnosed with about the same as you (only got tested because of my PCa), he has done nothing but monitor with psa tests (which it actual decreased a little and was not suspect at 1.0 or so to begin with, and he had no psa history). It has been 4 years and no changes in PSA and his continuing to watch, as that is his choice I did not talk him into, but didn't not talk him out of it, I am trying to keep him more informed. Now is his journey a mistake??? Objectively I have no way of knowing at this juncture, later hind site we could all be experts. He is also around 66 yrs. old now too. He may opt for something in the future.

Of course at your age and family history shown with PCa it might be best to tackle it sooner, maybe not tommorrow morning (per se). See if you can find out post surgery what pathology was found, alot of times higher gleason score were found compared to the biopsies. The skill of doc is always paramount and not just the technologies, robotic offers faster healing times in general, it looks appealing to most patients.

You could have your pathology reviewed by experts now up front, there are decent reasons for such, might not be critical in your situation/stats. Hope you find something out of that useful in your journey, we PCa survivors (thus far anyway) wish we can do for others and enlighten and broaden the scope of PCa issues and education so as to make for better known choices, protocols, and consequences.

Hey I wish you were 78 yrs old, then I would say w.w. is reasonable.

N-Bob
"Youth is wasted on the young"-W.C. Fields
 
"I wouldn't join a club that would have me as a member"-Groucho Marx


Bluenose
Regular Member


Date Joined May 2008
Total Posts : 260
   Posted 1/1/2009 11:34 AM (GMT -6)   

 

..hey Jon, welcome to the club and the best site on the net for PCa. Consider yourself lucky with the fact your biopsy picked up your Ca with just one core....better sooner than later.  It's ok to be alittle nervous..just take this time to educate yourself even more than I'm sure you've already done. Have fun, enjoy yourself, family and friends....excercise if you don't already.....and ask away with the questions I'm sure you have as well, believe me, you'll get great advice and answers from this bunch. A really great group of guys and gals......sounds like you've got a pretty good grip on things.....attitude says it all, you'll do great!  Again, Welcome to the club..

 


 
   age: 53
   Pre-0p PSA  Feb. 08, 5.0
      4.22.08, 4.1
      PSA  spiked once about 8yrs ago to 5.0 three months later
      back to 2.9...then into the 1.2 range until my re-scheduled 
      "missed" appointment this past Feb.
      Biopsy 5.1.08 
      Gleason-3+4=7
      T2a
      5 of 15 cores positive
      Da Vinci scheduled..7.29.08..as I read somewhere on this 
      site....."the first show of the day"
       DaVinci completed 7.29.08,
       Bladder Sling installed, umbilical hernia repair  
       completed during surgery.    
        Sent home 30hrs,  JP drain in place 7days,
       Path report "cancer fully contained"....Margins clear
        Cath removed 8.8.08(ten days)...one lightly used pad 24 hours
        ED therapy begins 8.9.08. 100mg viagra three times a week,
        pump everyday and hold for ten minutes.
        8.16.08 switched to Levitra 20mg.......whahoo, got lucky...
        immediate results..... 
        9.15.08 pad free at night, one thin (light) pad during the daytime
        hours. Just because I'm chicken..!
         9.18.08 1st post-0p-PSA-Undetectable...Zero's!  Yes!
         12.22.08 2nd post-op PSA-Zeros still...  
           .
         .."just tryin' to reason with hurricane season"..
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
       


Gerbe
Regular Member


Date Joined Sep 2008
Total Posts : 42
   Posted 1/1/2009 11:37 AM (GMT -6)   
Jon,

I experienced a lot of discomfort after biopsies, but that was simple tissue abuse and it went away. Not connected to biopsy results.

I second the moderators comments above about making a studied approach to your treatment option decision. You've chosen davinci, which I did also, and my only advice is if that is if that is your final choice make sure that the surgeon is well experienced. There is a learning curve to the robotic davinci and literature suggests that the best outcomes are achieved after a surgeon has done well over a 100 procedures.

This moment, here and now, is nothing less than the totality of existence.
I can't control my life, but I can influence this moment.


Age 59
PSAs 1.6, 1.8, 2.0 at yearly intervals
Mild DRE finding (hindsight unrelated) lead to biopsy
3/08 1st biopsy, 18 core. Pathologist 1, HPIN and ASAP, 0.5mm 1 core. Pathologist 2, carcinoma
7/08 2nd biopsy, 16 core. Pathologist 1, 1 core carcinoma. Pathologist 3, 3 cores carcinoma
Urologist retired. Referred to another Dr. in same practice, not experienced enough.
Robotic da Vinci performed 12/22/08, Univ of Washington Med Center, Dr. William Ellis. Both nerves spared.
Catheter out 12/31/08
Final path report:
79 g prostate gland
1.5 cm^3 cancerous, Gleason 3+4, bilateral, T2c
Margins clear, seminal vessels clear, 14 lymph nodes negative


JonH
New Member


Date Joined Jan 2009
Total Posts : 12
   Posted 1/1/2009 5:41 PM (GMT -6)   
Thank you gentlemen for the encouraging words. I am fortunate that my PSA is so low. My doctor has performed over 300 procedures and my wife and I were quite impressed with him. It is good to hear that the pain down below is most likely tissue damage from the biopsy.

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 1/1/2009 6:06 PM (GMT -6)   
Hi Jon,
Welcome to Healingwell. I am very sorry about your father. 54 is too young to die from this disease, So is 38 when it comes diagnosis. I remember coming here at 44 being one of the youngest here. You have a lot to think about and learn. I know you have some experience with it already, but make sure you understand all the options, and if you decide on surgery then make sure you get a real good one. I set my standard of at least 1,000 performed. Remember, for best results, the surgeon does matter more than the type of surgery.

We have seen a few drop here in their 30's and it just shows how screening guidlines need to be changed. As a spokesman for ZERO ~ The Project to end Prostate Cancer, I stress guys with family history start being tested at 35, and guys without family history at 40. I am still against the grain in the medical community, but luckily your doctor did screen you.

Sorry you are here, but welcome to the best site on the web for prostate cancer support.

Tony
Age 46 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007 @ The City of Hope
Post-Op Pathology: Gleason 4+3=7, positive margins, Extra Prostatic Extension (EPE)
Bilateral seminal vesicle invasion (SVI); Stage pT3b, N0, Mx
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (September 17 '08): <0.1 ~ Undetectable!
 
You can visit my Journey at:
 
STAY POSITIVE!
 
 


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 1/1/2009 7:21 PM (GMT -6)   
Hey JohnH, Tony is the newly elected moderator herein (or co-mod) and is super envolved in PCa issues, his advice about possible surgery is probably something you should write down or don't forget. Technologies are nice too, but the skill of whomever does it is the most important for your successful and non-complication surgery. Forget about he the doctor seemed real nice and all that, it is nice to see and hear, does not mean anything as to quality of work, expertise, etc., does mean good beside manner perhaps good salesmanship. That is the actual truth on such, I have seen plenty of posts over 8 yrs. where the doc seemed this and that, and some of those patients would have different things to say for various reasons (hindsight), some might not even be fair or valid but we see them from time to time (some are very valid too).

I got atleast 8 opinions (from interviews with docs) probably about 4 more if you consider correspondence type investigations. I saw and heard it all, agenda, bias, salesmanship, and also blunt factual truth, and some very decent docs, too....so before you get any treatment get second opinion(s) is not a dumb move.

Get educated on your PCa is probably the best thing, it takes work and effort...the dividends could be priceless for you personally.

N-Bob
"Youth is wasted on the young"-W.C. Fields
 
"I wouldn't join a club that would have me as a member"-Groucho Marx


Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 1/1/2009 9:39 PM (GMT -6)   
zufus-

I'm having a hard time understanding your position about a good doc who also is a nice person and a good doc who's a prick who has no time for the patient, doesn't return phone calls, doesn't call with test/path reports so that you have to call weeks later (as someone here had to do).

Also, is there a particular reason why you don't have a sig with numbers and procedures? It would help me, and presumably others, assess the value of your advice.

-Les
1/2005 Dx PSA 26.5 Gleason 7 (4+3) @Age 61
1/2005 Start Casodex and Zoladex
PSA drops to <0.01
7/2005-8/2005 5 weeks of IMRT and then HDR brachy
1/2007 Rad Oncologist orders CT scan of pelvis
because of complaints of pain in both thighs
MRI confirms pain not caused by cancer BUT
1/2007 CT scan of pelvis picks up a nodule at bottom of left lung
5/2007 CT scan of lungs shows 1/2007 nodule has grown and
there are numerous nodules on both lungs.
6/2007 Thoracic surgeon removes wedge of left lung for biopsy
6/2007 Path report says 95% chance of metastatic PCa, but she's
never seen cells like this before.
8/2007 2nd opinion at M.D. Anderson in Houston.
They confirm: mutated PCa, very rare, but seen there 2 or
3 times. Recommendation: have CT scans every 6 weeks
and watch for change. At that point start chemo and will
survive for 22 - 24 months thereafter.
PSA still undetectable, but get Lupron shot to bring T down from 27
2/2008 Trip to Houston – PSA now 0.5 and nodules larger. Lupron shot.
6/2008 Trip to Houston - Finally got results from doc. A number of lung nodules have grown, but, more important to him, is the fact that the malignant lesion on my pelvis seems to have flared up and he wants me to start chemo. He said I could wait a few months, but I told him I want to start now. He to get me signed up for a clinical trial in nearby NY.
9/2008 Interim bone and CT scans show progress vs. scans done before beginning trial. I'm cautiously optimistic. Next scans 10/30/08.
10/2008Bone and CT scans continue to show improvement. Med onc attributes mostly to Taxotere/Prednisone while I believe majority of progress attributable to investigational drug, Sprycel.
12/2008 Latest scans show no change. Bah Humbug!


Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 1/1/2009 11:51 PM (GMT -6)   
Jon,
Welcome to the club! It was one year ago Monday that I had my surgery. As one friend told me, "you've got a bit of rough paddling ahead of you, but nothing you can't handle." Those were the truest words I got. First - to prepare. Have lots and lots of sex. That erection will be gone for a while, but will come back - don't worry. Buy a recliner to live in after surgery. I slept in the recliner. It was easier for me to keep the cath tube and bag situated if I didn't even try to lie in a bed. Besides, my wife would have been awake every time I turned over. it gave her a break and a good night's sleep.
The cath is no big deal. sounds worse than it is. People each have their own way of handling it. The first few days are the hardest, but really, just use common sense and DON"T over think or worry about every little thing. Blood is normal, weird pains, twinges and bizarre things coming out of bodily openings are to be expected! Order Viagra now from alldaychemist.com for after surgery. buy a penis pump. Have fun and shave yourself before surgery - if you aren't already. Buy a pillow ring to sit on after surgery.
Take LOTS of time off work. you deserve it. Don't be a hero. Take the time. This is major major surgery. The physical and emotional recovery both need time and peace to take place.
You will be fine. It is sooooo nice to be on this side of the bridge!
Take care.
Ask lots of questions
Paul
47 at Diagnosis.
Father died of Pca 4/07 at 86.
1/06 PSA 3.15
1/07 PSA 4.6      (Biopsy 3/07 just suspicious)
10/07 PSA 5.06   (Biopsy 11/07  1 of 12 with 8% involvment) (1mm)
Da Vinci surgery Jan 5, '08 at Mt. Sinai Hosp. NYC  www.roboticoncology.com
Saved both nerve bundles.
Path Report:  Stage T2cNxMx
-Gleason (3+3)6
-totally contained to prostate,
-10% involvement in L & R Mid lobes
PSA 0 at nine months.
Pad free on March 14 - (10 weeks.)
ED - Take 100mg viagra every night.
Totally usable erections at 10 weeks, which disappeared over the course of a month or two.
 Now limited success with cialis, viagra, rings, and luck. Waiting for that moment that is said to occur between nine and twelve months where things start to improve!
 


sandstorm
Regular Member


Date Joined Dec 2008
Total Posts : 194
   Posted 1/2/2009 1:17 PM (GMT -6)   
Welcome to the club JonH. Sounds like you found a good doctor and will be in good hands. You have also come to the right place for answers to your questions. There is a tremendous amount of knowledge and support on this board. I'll have my Robotic RP 12 days before yours so I'll try to post some personal information as soon as I get home. Hang in there and good luck too you.
Age at DX 57
5-18-07 PSA 7.7
5-06-08 PSA 4.6  8% free psa
10-23-08 PSA 5.65 4% free psa
11-04-08 biopsy
11-11-08 2 of 12 cores positive
Gleason 3+3  6  stage t1c
CT and Bone scan negative
Scheduled for da vinci RRP 01-09-09


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 1/2/2009 3:36 PM (GMT -6)   
All you can do is talk to the Dr's and get their answers to your questions. Then you have to make your decision and go for it. My Dr. had done well over 300 RRP's when I went to him. He gave me the same percentages of complications as the others. Unfortuntately I ended up in the 5% club when it came to the incontinance.
As far as the mega number Dr's it might be questioned if they are at "teaching" hospitals or not? What I mean my this is that you may have the surgery under the name of the "professor". But in actually there will probably be another Dr. doing a major portion of the surgery. Once the lights are out you really do not know what goes on in the OR.
When I had my AUS I went to a "teaching" hospital to the "expert" in the area. But I have a strong feeling that the "resident" that came in prior to surgery to have the standard pre-op questions and answer session was actually going to be the one doing some if not all of the surgery. I had even talked to the "professor" about that and he said that yes, part of his job was to teach also. He also said he would be right there and would still have a major role amd make sure things were done correctly. My AUS has turned out great! I could not have asked for a better result.
Good Luck, KW
    43 at Dx and Surgery (RRP)
    PSA 5.7, Biopsy 3 of 12 positive (up to 75%) all on left side of prostate, Gleason 7
    RRP on Oct. 17, 2006 - Nerves on right side saved. All Lab's clear. 
    Cathiter in for 28 days due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00.
    ED workable and usable with Viagra.
    Feb. 20th, 2007 - Feb. 4th, 2008  Cystoscope, Two Collagen injections,Second Opinion Consultation for Incontinance at OU Medical Center, Bio-Feedback training, Chiropractic, Accupuncture  to try to resolve ongoing incontinance (4-6 pads a day)  All PSA's 0.00.
    Feb. 22nd, 2008 - Surgery to install the AMS AdVance Male Sling.
    March 27th, 2008 - Sling not working, Little or no improvement.
    April 18, 2008 - Collagen injection.  Back to using 4-6 full pads a day within a week.
    May 14, 2008 - Another collagen injection to try to Band-Aid the leaking for our June cruise.  Will start making conusultation appiontments for AUS after we return.
    July 14th, 2008 - AUS consultation with Dr. Morey at UT Southwestern (Dallas).
    July 30, PSA 0.00.
    Aug. 22nd, 2008 - AUS Surgery by Dr. Morey
    Oct. 6th, 2008 - AUS Activation by Dr. Morey
     


DJBearGuy
Veteran Member


Date Joined Dec 2008
Total Posts : 760
   Posted 1/2/2009 7:17 PM (GMT -6)   
JonH,

As others have said here, one thing you can do is keep yourself as healthy as you reasonably can. That will help you out in tolerating and recovering from whatever treatment you wind up experiencing. That means exercise, eating healthy, get enough rest, and as Paul points out, plenty of sex, which keeps the equipment in shape!

Good luck and keep us updated.
DJ

Age 53
PSA 2007 about 2
PSA 2008 4.3
Diagnosed September 2008.
Biopsy: 6 of 12 cores positive
Gleason 4+3 = 7
CT and Bone scan negative
Da Vinci surgery at City of Hope December 8, 2008
Radical prostatectomy and lymph node dissection
Catheter removed on 7th day, replaced on 8th day, removed again 14th day following negative cystogram
pT2c
lymph nodes negative
microscopic margins
next PSA 1/22/08


jerseycity
Regular Member


Date Joined Nov 2008
Total Posts : 123
   Posted 1/2/2009 7:29 PM (GMT -6)   
Hello KW,

I am having biofeedback training next week. what's your take on it. My uro just wanted to be sure I am doing kegals correctly. I'm told it is a probe in the butt with and electroid elsewere. How often did you do it. worthwhile or not.
 3-17- 8 went to Bruce Springsteen concert , great time
3-18-8 routine exam
3-19 doctor called said psa was elevated
what's a psa?
referred to Uro, had several more blood tests.
PSA steady at 4.75
biopsy  June 08 , 12 cores, 4 on left confirmed , right clear
gleason 3 + 3 T1c
research time.
decieded on open RP, Head of Uro  is my Doctor
Surgery done 10-1-8 by Dr See at Frodoret Hospital in Milwaukee
Cathater out 10-13 no problems
Post op,  organ confined, gleason up to 4 + 3, all clear margins
T2c 20% volume, very good outcome I feel
Incontinent and ED.  Time will tell, was told all nerves  saved.
back to work 11-5-8.
 
Rich man in a poor mans shirt.


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 1/2/2009 9:04 PM (GMT -6)   
Hey Jon, as all the rest have said welcome to the club. There is a wealth of information here and luckily many of us have varied approaches to this demon. i probably went the wrong path when I was diagnosed I jumped right into RP but I do not second guess it. Do educate yourself however please remember this is cancer and the quicker you attack the demon the better it will be for you emotionally. I say that because most people I talk to that are awaiting treatment are fearing the spread. You do seem to have caught this early and that is a great thing. Since you and I do not know each I will not impose my spiritual thoughts just know that I will honestly be praying that you will never have to deal with PCa again other than being a great advocate for us all. Stick with us my friend and share in the discussions.

peace and love
Dale
My PSA at diagnosis was 16.3
age 46 (current)
My gleason score from prostate was 4+5=9 and from the lymph nodes was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11
PSA July 24th, 2008 is 0.04
PSA Dec 16th, 2008 is .06
Testosterone keeps rising, the current number is 156, up from 57 in May
cancer in 4 of 6 cores
92%
80%
37%
28%
 


JonH
New Member


Date Joined Jan 2009
Total Posts : 12
   Posted 1/4/2009 1:57 PM (GMT -6)   
Once again I am feeling a dull pain in my "scrotal region". Not a real problem at all I am just wondering why it seems to be getting a little worse. I was told it was from the biopsy which I hope is the case and not the actual cancer spreading. I am probably being paranoid as it is a very minor concern.
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