subj edit: Sonny- Surgery to Radiation in 8 weeks -Gotta be a record

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Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2448
   Posted 11/10/2009 7:48 PM (GMT -6)   
The ever so gracious folks here at HW bestowed upon me Poster Boy status for my non-event surgery and recovery. Still in a gracious mood they bestowed another Poster Boy award for having never entered the Incontinent World. Thank you very much.

BUT I AM AFRAID THAT I HAVE TO RETURN THE AWARDS POST HASTE. Please provide me with the shipping instructions.

A month ago I posted that my 30 day PSA test came back at 0.40. I wanted to believe that it was just a blip and there were some little PSA critters still running around in there and I was prepared to wait until the next test.

So at 7+ weeks I ordered a Specific "Post Surgery Ultra Sensitive PSA test from a different lab.

Today the results came back 0.53. Not the good news I was looking for, I gotta tell you.

I was so looking forward to buying the beers as the newest member into the ZERO club. Sorry guys, you'll have to buy your own.

In preparation (I like being organized) I had a consult with a RAD Oncologist just before this last test. I called my dr in Detroit just to keep them in the loop and he said he really believed that the 4 month check-up would be key.

Well I called him today after the 0.53 result and he concurred that I should continue to move ahead with discussions about IMRT/IGRT. He is also aware of the recent studies that indicate that when surgery is followed by rad within 18 weeks the resulting outcomes are much improved. Looks like I am going to be giving that study a try and will test their theory and add myself to their stats.

So tomorrow I am going to MD Anderson to schedule a meeting with their PCa Specialist and RAD Oncologist. My wife being a cancer patient there is greasing the wheels for me to move to the front of the line to schedule appointments hopefully.

As most of you know, my wife is a cancer patient and had an experience of her own this summer. She spent 7 weeks in the hospital (4 in ICU) and it was at this time that I was diagnosed with PCa. She said later that it was the best she could do at allowing me to be able to think of something else besides PCa every once in a while. LOL. She is such a sacrificing person, you have to admit. LOL

Well as I write this we are back at the hospital again. She is again doing her best to take my mind off of PCa and today's crappy news. In addition to the trials and tribulations with her cancer treatment over the years, at one point she experienced a TIA (mini stroke). Well for the last couple of days she has been having a few symptoms and her doctor called us tonight and told us to go to the hospital for tests and evaluations.

As you can tell, my wife loves me an awful lot to make sacrifices like this so I can give the PCa mind games a break. What a gal.

So there you have it folks. Strap me in, stick the nuclear rod up my butt and let's go for a ride.

I am sure that there will be more to follow.

Thanks for being here folks.

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

Post Edited (Sonny3) : 11/10/2009 7:08:01 PM (GMT-7)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/10/2009 7:54 PM (GMT -6)   
Sonny, my dear brother, you already know how I feel and what I advised from talking to you today. You definitely have some strong re-occurance going on there. Sounds like you are marching toward the next step in stride with a good facility and plan in place. Again, I hope they advised at least a 39 treatment plan with a min of low 70s gys for your RT portion. Time to bring up the 16" guns on the old battleship and see if we can blast the bugger PC surviovors right out of your body.

I am here for you. If you need anything, just a phone call away. Give my best to your lovely wife and your cool dog.

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


Opa N
Regular Member


Date Joined Sep 2009
Total Posts : 150
   Posted 11/10/2009 8:05 PM (GMT -6)   
Sonny,
That is such a kick in the butt.
I'm afraid that I don't have many insightful words of encouragement to offer you, but just know that all of us here are with you both in spirit.
Your wife's doctors are doing right for her, and you are doing right for you. I know I encouraged you to have the second test, and I prayed that the result would come back differently. At least now you know for sure.
Soldier on.
 
All the best.
Roger
 

 Age 67 at diagnosis. Treated for coronary artery disease (CAD) since 1998, and under control with medications.

2/6/09              Routine physical, with DRE and PSA Test. PSA 4.02. Referred to Uro

4/20/09            TRUS  w/needle biopsy

4/23/09            Diagnosis PCa with Gleason 4+3 in 2/2 cores, Gleason 3+3 in 5/10 cores.

                        CT scan and Bone Scan both negative. Stage T2C.

8/27/09            DaVinci RP at WakeMed Cary NC with Dr. Tortora. Discharged 8/28.

9/8/09              Catheder removed. Path post-surgery confirms PCa, with Gleason 3+3 with scattering of 4. Positive margins in L & R posterior, R and L seminal vesicles, with perineural invasion.  Stage pT3b.

9/30/09            PSA Post-Op <0.01. Met w/Uro/Surgeon to review surgery and path report. Referred to Prostate Oncologist and Radiation Oncologist. Appointments set for 10/8.

10/8/09            Met w/ both oncologists. Adjuvant Combination Therapy to begin ASAP.

10/21/09          First Lupron injection. 30 mg dose (4 month)

11/2/09            PSA 2-month <0.01. Cystoscope w/calibration and dilation to remove scar tissue from urethra. Big relief.

 

Initial incontinence pretty bad, starting w/6 Depends pants/day. Gradually getting better, with dramatic reduction in leakage around 9/20. Currently on 1 pad during the day and one at night (for security). Actually totally dry at night.

 

 

 


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2448
   Posted 11/10/2009 8:21 PM (GMT -6)   
David, thank you my brother, and yeah the dog is too cool.

Roger, yep the 2nd test was always in my plan. You and others chimed in as to the correctness of my plan.

Hey it's always a crapshoot when your dealing with PCa. We just deal with the cards until we reach a point of shouting enough is enough. I'm not there yet. I am a baby in the woods on this journey. But it sure seems like I am on a very fast track learning curve.

Thanks guys,

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


pa69
Regular Member


Date Joined Mar 2009
Total Posts : 260
   Posted 11/10/2009 8:58 PM (GMT -6)   
Hi Sonny,

It's a crappy break for you. Just remember there is always hope.

Best wishes,
Bob
Age 70, First ever PSA 7.8 taken June 2008, Biopsy July 2008, 10 of 12 cores positive, Gleason 3+3=6
da Vinci surgery December 10, 2008, catheter removed December 29 2008
St. Lukes Hospital, Bethlehem, Pa.
Dr. Frank Tamarkin
Prostate weight 73.0 grams, Gleason 3+3=6, stage pT3a
Tumor locations: right anterior apex, right posterior apex to mid
left anterior mid to base, left posterior apex to mid
extensive perineural invasion in right anterior apex, right and left posterior apex to mid
seminal vesicles negative
Four PSA tests undetectable, latest Oct 30


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7270
   Posted 11/10/2009 9:15 PM (GMT -6)   
Sonny:

What depressing news. Time to recoup and renew the battle. You are smart staying on top of this.

I enjoyed our chat yesterday. I am anxiously awaiting my PCA-3 result

Mel

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2448
   Posted 11/10/2009 9:20 PM (GMT -6)   
Thanks Mel. Be sure to let us know how the PCA3 test works out.

You are the first here that I know of that has a Uro that uses this test. I could be a real find for others that travel the PCa path.

Thanks for the kind words,

Sonny

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2243
   Posted 11/10/2009 9:32 PM (GMT -6)   
Sonny,
Sorry for the double whammy on you and your wife. Wish this could be a srtaight shot for all of us, but it's not. What I do know of you is that you have a good head on your shoulders and a supportive spouse, so you are 2 up on many people. Will keep the two of you in my prayers and I will watch for your posts as this all unfolds. Get a good night of sleep if possible.
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


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 11/10/2009 9:39 PM (GMT -6)   
Best to you Sonny, in however you decide to fight this.
Thanks for atleast to talking to my brother, whom is not the most gracious type and is very frustrated with the system and docs for his wifes Mulitple- Myeloma cancer case and the maze they have gone through. Interesting that she is doing better atleast for now, without all the heavy medical intervention(s).

wesd40
Regular Member


Date Joined Sep 2009
Total Posts : 41
   Posted 11/10/2009 9:47 PM (GMT -6)   
Sonny,
I am hoping all goes well with all of this.I am on your side.
.Wes

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2448
   Posted 11/10/2009 9:47 PM (GMT -6)   
Michael, thanks for the kind words and blessings. Always like to have them prayers rolling my way. I will get some good rest when we get out of the hospital. My wife is in the ER and they are waiting to take her up for CT Scans, MRIs, Dopplers, whatever. With her history they are trying to rule out clots and blockages at this point.

Bob, I enjoyed the brief emailing with your brother. Ball is in my court, I need to write back. Been just a little busy today, I think you understand. Your brother seems very knowledgeable in the ways of MM. May be we can share a little that will be good for both of us.

Thank you gentlemen,

Sonny

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 11/10/2009 9:51 PM (GMT -6)   
My friend Sonny, I hate this darn PC....It is such a visious dragon....Buddy sounds like the plan is in motion... Please let me know if there is anything and I do mean this...Anything I can do to help you and your wife.


As always your brother in PC

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.


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2448
   Posted 11/10/2009 9:59 PM (GMT -6)   
Thanks Jeff 1,

Everything is somewhat under control for the time being, but hey, give it another 1/2 hour and things may change.

Not sure, but February is beginning to look a little more postponed than my efforts to put PCa at bay. Got just a little cocky with my breezing through the surgery and recovery and the darned thing said "Wait just a minute". It's on now, that's for sure. Mano o Mano, and may the best buzzard win.

Thanks for the kind thoughts,

Sonny

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 11/10/2009 10:37 PM (GMT -6)   
Sonny,

It's all been said. You are a brother to us, and we are all standing, laying and sitting with you. Really sorry to hear about your wife as well. Please pass our concern for her along to her as well.

It's a crazy road we are on. But there are bright spots among the dim ones. Having friends and family who care definitely helps. Our prayers are with you.

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 injections


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2448
   Posted 11/10/2009 10:42 PM (GMT -6)   
Thanks GL,

Really appreciate the thoughts and prayers. I'll pass along the concern, when they bring her back. In keeping with the PCa mantra of "never pass up a chance to pee", stepped out for a minute and when I came back they had wheeled her out for testing. They swear that they will bring her back though.

Til later,

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


dkob131
Regular Member


Date Joined Apr 2008
Total Posts : 364
   Posted 11/10/2009 11:28 PM (GMT -6)   

Sonny:  If you're going down to M.D. Anderson there's a good chance you'll end up seeing Dr. Arujo, he gave me a second opinion on my situation.  The real brains of the outfit is his assistant Merilesse, she runs the show.

I was amazed at that place's size and organization.

Good luck

David


 54 y.o.
 Diagnosed 4/10/08
 DRE Normal
 PSA-5.5
 Biopsy- 12 cores, 4 positive highest 4+4=8
 Bone scan, CT scan and Chest X-ray clear 4/16/08
 Urologist suggested surgery 4/16/08
 MRI on 4/24/08 clear no suggestion of lymph node   involvement.
 4/24/08 -Started on Lupron and Casodex preparing for HDRT and IMRT in late July.  This treatment will not preclude me from surgery if I change my mind.
Decide to have DaVinci surgery after another consult with surgeon.
6/19/08- DaVinci surgery at University of Washington.
6/25/08- Path report, clear margins, no noted extension
9/12/08- PSA <0.02 
12/05/08-PSA <0.02 Six months after surgery 
3/02/09-PSA <0.02 Nine months after surgery
5/02/09-PSA .10
8/17/09-PSA .21 Begin HT and set up for SRT to begin in 2 months.
 


CPA
Veteran Member


Date Joined Feb 2008
Total Posts : 655
   Posted 11/10/2009 11:47 PM (GMT -6)   

Greetings, Sonny.  Sorry to hear the news.  I was sure hoping that the 30 day test was an anomoly and the next tests would go down.  Evidently not the case but it seems like you have worked out an excellent plan of attack.  Best wishes to both you and your wife in your continued treatments.  Please know you have many, many fine people here who are pulling for both of you.  Keep up the good fight.  David

p.s.  we'll get together sometime - whether it's Feb or later.  For now, just focus on licking this thing! David


Diagnosed Dec 2007 during annual routine physical at age 55
PSA doubled from previous year from 1.5 to 3.2
12 biopsies - 2 pos; 2 marginal
Gleason 3+3; upgraded to 4+3 post surgery
RRP 4 Feb 08; both nerves spared
Good pathology - no margins - all encapsulated
Catheter out Feb 13 - pad free Feb 16
PSA every 90 days - ZERO's everytime!
Great wife and family who take very good care of me


dogbot
Regular Member


Date Joined Aug 2009
Total Posts : 147
   Posted 11/11/2009 5:04 AM (GMT -6)   
Sonny, I can only say all the best to you and your wife, and I wish that both you and your Lady win through the battles ahead. All the Best from England.

Diagnosed February 2009. Gleason 6, Psa 7.2, 12 core biopsy, and then Mri scan, which showed organ specific.
DaVinci at Addenbrookes, Cambridge, England 18th May 2009.  Nerves removed one side.
Catheter in for 8 days, no pain, no post op problems apart from an infection, cleared with antibiotics.
Some aching around the penis, which still occurs.
6 week psa 0.1, post op pathology all good, confirming pre op tests. Ed a problem, no treatment as yet.
Light ladies pad during the day, just to control a slight dampness and a Tena for  men pad at night for occassional leakage.
Awaiting 3 month consultation at the moment.
Sept 09 - still awaiting consultation. 99% dry during the day, tena pad at night just in case.
Sept 18th 09. PSA less than 0.1
Sept 29th follow up consultation at Addenbrookes. Staff happy with progress.
Nov 11th update. One small stress dribble in the last 2 months. Still some muscle stiffness in pelvic area.
 


reachout
Veteran Member


Date Joined May 2009
Total Posts : 739
   Posted 11/11/2009 8:26 AM (GMT -6)   
Sonny, so sorry to hear about your PSA results. You did so much research before your surgery, and helped so many of us with our own path through this. Goes to show you what a crappy disease this is. On the positive side, at least you are going to get the RT very quickly, while the remaining cells are still in shell shock from the surgery, so there's an excellent chance this will kill them for good. My prayers and wishes are with you for a successful treatment and a good recovery.
Age 64 yrs
DX 5/2009
8 out of 12 cores positive
PSA 5.6
Gleason Score 3+4=7
Stage T2a
Da Vinci Surgery 08/07/2009
Upgrade Gleanson Score 4+3=7
Stage pT2c
Neg Margins and Nodes
Extracapsular extension noted but neg Extraprostatic Extention
Dry immediately
First PSA 11/3/09 <0.1

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