Just back from Uro visit and newer higher still PSA

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Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 6/6/2011 5:42 PM (GMT -6)   
Uro's office called me this morning, and changed my appt, and said that Dr. xxx wanted to make me his last appointment of the day.  Kind of spooked me a little, but in the end, he wanted to allow plenty of time for him and I to talk.
 
My PSA went up another 50% in that short time to 5.8.  He was not surprised, nor I.  So for you that like to calculate doubling time, there are now 3 good points post SRT in the solid number range to work with.
 
We spent a solid 40-45 minutes one on one.  He likes the approach of my new medical oncologist, and like him, doesn't want to treat the number, but rather treat me the patient.  He still strongly feels that I should not start HT at this point.  This matches the intitial view of the Oncologist.  He said if I wanted it, he would advise against it, but would do it.  He still feels that is one "tool" that needs to be reserved for later.  He plans to talk to the oncologist and compare notes.  He wants to make sure that all three of us are on the same page.  I agree.
 
He also fully agreed, and I was waiting for his opinion, that future PSA tests will be at 6 month intervals.  If a sudden huge spike appears, then we would regroup on the subject.  He feels the oncologist is correct on that.  So my next PSA is set for December 6th of this year.
 
He wants me to continue to work with whatever tests are needed to get to the bottom of all the hip and back pain that is still progressing.  And, he thinks I shoulld stay right where I am with the Oncology Rehab.
 
Some of you, of course, won't agree with this approach, but I am ok with it, and so are both of my key doctors involved.  He said you got to be careful of taking on-line advice from non-medical people, even if they have researched, etc.  I agree with that statement as well.
 
That's kind of the latest scoop on me.
 
David in SC
 

142
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Date Joined Jan 2010
Total Posts : 7084
   Posted 6/6/2011 6:18 PM (GMT -6)   
Was hoping for a drop - but I guess you just aren't going to get a break!
 
Sounds like you have a plan that the docs agree on for once.
 
Hang in there!

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 6/6/2011 6:30 PM (GMT -6)   
David,
You do what you want to do. I think it's the only way to keep you happy. I do not like the disrespect you get on it, and you won't hear anything else but support from me.

Tony
Advanced Prostate Cancer at age 44 (I am 48 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
Da Vinci Surgery ~ 2/16/2007
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.
Undetectable PSA.

Blog: www.caringbridge.org/visit/tonycrispino

BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 6/6/2011 6:31 PM (GMT -6)   
David it is disappointing that your PSA increased again ------ I was hoping to see a downward plunge for whatever reason this time. You and your docs know what is best for you and it is reassuring that they are on the same page. If you eventually go with HT was there a PSA number they thought might be a good place to start? I hope to read that the back/hip pain issue is resolved shortly ------- you deserve a bit of relief on that front at least. You have a great attitude and it comes through (thru?) in your posts.
Keep your pecker up,
Bill

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 6/6/2011 6:35 PM (GMT -6)   
David: Like you I was not shocked at your PSA results. I am pleased that you and your Dr's agree on a plan of action. It really sounds like your are much more at peace. How is Peg dealing with this stuff. We have been so concerned about you that seldom do we ask about your wife. How is she doing?

Your Brother in PCa

Cajun Jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1% cancer core
10/08 Nerve-Sparing open radicalSurgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clea
r3 month: PSA <0.1
19th month: PSA <0.1
2 year PSA <0.1
Only issue at this time is ED but getting better

Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 6/6/2011 6:42 PM (GMT -6)   
Like others here, was hoping for a drop - or even stabilization - of your PSA but it doesn't appear to be in the cards for you.

Loved Tony's post...as I've said before, the only one who counts in this is you. If you are comfortable and agree with your medial team, that's what is important. Also think your doctor gave you good advice - none of us should make decisions based on what we hear from others. Opinions are all well and good - and serve a purpose - but should never dictate what someone does or doesn't do when it comes to their own health.

Sounds like the doctors are aiming for good, solid quality of life for you and understand "where you are coming from." Hope someone figures out what's going on with your hip and back and that you can get the pain under control.

As always, you continue in our prayers and we send you tons of hugs and kisses. With love from The Empire State, Sephie & John (my "old" man who turned 61 this past Saturday)

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 6/6/2011 6:51 PM (GMT -6)   
142, sure, a drop would have been nice, not like I wouldn't have loved it, but it wasn't practical or logical to expect one. each of our (hw brothers in general) have our own unique path, and with mine, the cancer is bound and determined, for sure.

tony, appreciate that. i don't like to judge other's treatment plans either. although we all share a lot of what's going on, there's no way for anyone here (myself included) to know all that our doctors are thinking and scheming with our journeys. we are not the doctors, that's why we go to experts, to get expert advice.

billy, my pecker is still fine (one of the few things that keeps on ticking no matter what, perhaps thats my prize for all the other suffering). no, neither doctor feels there is any specific line in the sand, they both talk of advanced patients, not on HT or Chemo, that do well for long periods of time with rising PSA numbers. They both feel that there are doctors and patients that are too freaked out with a rising number, that jump on the non-curative path too soon.

jeff, thanks for asking. of course, peggy isn't happy that the cancer hasn't been stopped. but she has a lot of faith in the doctors too, and she knows i stay on top of the pc world. as a nurse caring for the infirmed and elderly, she's all about the quality of life over the quantity of life debate.

like she is real happy that i bought the sailboat recently, knowing that there is something other than medical criseses that can make me happy. whether i got 5 years or 20 years or whatever years, we are both trying to make it more enjoyable where and when i can. still hard to do all i want, with such a severe fatigue battle going on constantly, along with the never ending chronic pain issues.

but after 37 years, we have been through a lot together. we have seen worse. we both are just trying to make the best out of a bad situation. i am there for her, she is there for me. that's all i can ask for.

fighting to add life for the sheer sake of living longer, isn't always a good answer. that is one big lesson i have learned and come to accept after the horrific scars I have encountered in the past nearly 3 years.

david
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

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 6/6/2011 6:56 PM (GMT -6)   
thanks a heap, sephie, and the red sox number one fan: john. appreciate all you said. still not kidding, we are still scheming a late fall or early winter trip to the big apple, and we would love so much to meet you both. and happy birthday john, i am still thrilled that he is doing so well and holding his own after his former scare. when one of our guys gets a break, like john, there's never any jealousy on my end, only happiness, that the PC monster has at least loosened his hold on one of us men. that's a victory for all of us, and i mean that sincerely.

david i lowly 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

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2243
   Posted 6/6/2011 7:18 PM (GMT -6)   
Thanks for the update David. Hope the rehab is going well for you and maybe the pain will lessen with time. Each of us has to make the best choice of tx that we can as there are so many variables. Really not sure what I would do if I were in your shoes and there are somedays I'm not sure what I will do standing in my own shoes. Keep us updated and I'm trying my best to push this heat out of North Georgia into South Carolina.
Michael

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7084
   Posted 6/6/2011 7:20 PM (GMT -6)   
David,
 
The big question - Did the mainsheet block come in?

Ralph Alfalfa
Regular Member


Date Joined Nov 2008
Total Posts : 469
   Posted 6/6/2011 7:34 PM (GMT -6)   
HI, David. I'm with you on this one. Do what you feel you need to and give yourself a break. Enjoy the sailing.

Bob
AGE:59

Dx: October,27, 2008(the day after my birthday)
Psa 14.5,Gleason (4+3), all scans negative. Biopsy, 4 of 12 positive. DaVinci, 1/19/09. Confined to prostate? No lymph node involvement, all margins clear. 8 wk. Psa<.01,6mon .1,9 mon. .2. Began IGRT 10/09, finished.12/09. Since then,.1.12/22/10. <0.10, trending down. See you in one year, Doc.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 6/6/2011 8:12 PM (GMT -6)   
Thanks Michael, you can keep the heat, we are on our 4th week of 92-99 degree weather, most unusual for here. It's murder on me for sure, and its not even summer yet. We had 2 brief rains during this time.

Thanks too, Ralph.

142 - yep, the needed part came in 2 days ago. We plan a shakedown cruise on Lake Keowee on Thursday, with wife and youngest son if all goes well. Going to mount the boarding ladder tommorow, and on Wednesday, we are going to step the mast and make sure all the rigging works right. Already re-varnished all the mahagony wood work. I am so OCD about details, even painted all the lug nuts on the trailer nice and shiny.
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

duke68
Regular Member


Date Joined Mar 2007
Total Posts : 243
   Posted 6/6/2011 8:56 PM (GMT -6)   
Hi David

Sorry about the psa a real bummer. :(

Everyone is different in the way there cancer acts now and in the future.
I really hope it comes back a lot better in 6 months so you don't have to make a decision on further treatment.

Have a great time sailing. :)

Best Wishes

Gerry
age at diag 68 Oct 2006 G8 T2b psa 11.7
4 of 8 cores 20% 30% 60% 100%
rrp Dec 2006 G9 4+5 m+ sv+ ece after 6 weeks psa 0.6 second opinion Dana-Farber pT3b 4+4 + T5 = G9
3/2007 ADT2 6 months lupron + casodex
4/2007 SRt 35 sessions to lymph nodes and prostrate. Psa <0.1 from June 2007 to March 2010
Psa 6/10 0.3 9/10 0.6 12/10 2.5 :(
Dana- Farber Phase 2 trial Avastin ADT2

kbota
Regular Member


Date Joined Aug 2010
Total Posts : 487
   Posted 6/6/2011 8:58 PM (GMT -6)   
David, I am sorry about the psa increase, but it sounds like you and your doc have a solid plan. We all wish you the very best. And thanks for keeping us all up to date.

K
Age 57 at Dx
5/09 PSA 2.26
6/10 PSA 3.07 FPSA 18% DRE +
Biopsy, 7 of 18+, >60%, 4+5=9
7/21/2010 - RRP
Nodes & Ves neg
tumor contained, still 4+5=9
pni ext.
9/3/10 - 0.04 99% continent
10/14/10, 0.04, and lupron #1, 99.9% continent
Total ED, implant on 12/15/10
2/11 - 0.04, HT #2
6/11 - 0. , HT #3

Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 6/6/2011 9:04 PM (GMT -6)   
David, .....

The PSA is what it is ... and I really like the approach of your doctors. I join all above in giving you a total vote of confidence in the route you've chosen. And, I agree the hip and back pain are #1 on the agenda right now.

Love the sound of that sail boat. You've got my email address. When you have a photo of it please send it along.

Sail on my friend, sail on.

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
  

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 6/6/2011 9:09 PM (GMT -6)   
gerry, thanks, my friend

you too, kbota

ah yes, sheldon, when we get "Octavia" rigged in the yard, will release first set of pics for anyone interested in seeing them. And on the first voyage, will film the entire thing in HD and have it out on You-tube.

the pc part, was telling my uro today, that i have come to peace with the entire thing. i feel more relaxed now, then at any other time in my journey. i no longer fret and worry about it. i feel like i am in safe hands, regardless of any future developments. its all about mental attitude i think, while i may or may not beat the cancer in the end, while i am yet living, i now refuse to let it dictate my life and my moods.

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

clocknut
Veteran Member


Date Joined Sep 2010
Total Posts : 2680
   Posted 6/6/2011 9:20 PM (GMT -6)   
Beth and I've been out of town living the country life in the travel trailer for an extended weekend, hardly ever thinking about PCa, but found this bit of news when I turned on the computer.   Well, David, you predicted it, and your attitude and you whole approach sets an example that I hope I can emulate when and if my numbers start cllimbing.  I'm due for a PSA test this month, so I'm sure hoping that doesn't happen, but who knows?  Wish you all the best, and congrats to you on putting together what seems to be a first-rate medical team.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 6/6/2011 9:30 PM (GMT -6)   
thank you clock. glad you and your misses had a good rv outing. we were suppose to go this past weekend, but just prior to loading up, the tow vehicle developed a problem, and we are having to reschedule in 2 weeks. i hope your next psa test goes well for you. mine was expected to rise, my uro had it right on the button, my guess was right behind his.

as far as my "team" goes, it has all been coming together quite well. considering my resources, physical ability, and logistics, i feel i am having access to some good doctors. i am not one to go traveling the world in search of the "perfect" doctor, i dont think any such creature really exists. so far, and only based on observing HW folks, i am not convinced that those that went to the "top ten" doctors and facilities, etc, really have any better outcomes than those of us that stay local. just my opinion of course.

david
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

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7270
   Posted 6/6/2011 10:13 PM (GMT -6)   
David:
 
When one peruses HW you get tons of opinions/arguments.
 
You have certainly considered them all and of course you have to decide what is best for you.
 
You've done that. Good luck.
 
One positive aspect to this PSA -- hasn't your PSADT slowed down quite a bit? It may be up, but it may be improving nevertheless.
 
Enjoy the 6-month break.
 
Mel

Sonny3
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Date Joined Aug 2009
Total Posts : 2448
   Posted 6/6/2011 10:33 PM (GMT -6)   
David, like everyone else I also had hoped you would catch a break. But I also know from our conversations that you weren't surprised by the results. Hey, but you know me, carp happens and it is what it is.

I like your docs and their approach. On kinda the same path right now myself. You sound to be in a very good and comfortable place right now. Just figure out the darned hip thing and get on with the enjoyment of the boat and traveling home. Works wonders for the mental and emotional approach to this crazy stuff. I can attest to that.

Saw you called tonight and I have tried back twice now. Then again you never are near the darned phone anyway.

Sonny

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3892
   Posted 6/6/2011 11:03 PM (GMT -6)   
I think it's great you are navigating these troubled waters like a champion and you and your doctors are all on the same page..That must be a big help..

I would be interested to know if you are taking any supplements or prescription medications aimed at the PC? What are your thoughts on that..Somehow I have the feeling you are not into that stuff at all but I could be wrong..I thought about going through your old posts and threads to find the answer but 11,300 would take me quite a while... turn cool

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7270
   Posted 6/6/2011 11:14 PM (GMT -6)   
C'mon FAIRWIND
 
You know David has expressed his views on this many times.
 
Are you trolling?
 
<g>
 
Mel

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3892
   Posted 6/6/2011 11:40 PM (GMT -6)   
I know David's feelings about hormone therapy, but I'm a little unsure about things like pomegranate juice, curcumin, resvestrol, vitamin D, things that Dr. Myers has had great success with...

Trolling for WHAT?? Why?? Just asking a question... confused

cooper360
Regular Member


Date Joined Jul 2010
Total Posts : 161
   Posted 6/7/2011 12:04 AM (GMT -6)   
I think of you often and as always hope for the best.........sorry the news wasn't as positive as everyone would have liked......as always a little prayer and a some luck coming your way..............Cooper wink

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 6/7/2011 12:05 AM (GMT -6)   
Sonny, sorry I missed your return calls, you know me, its rare that I am hovering around my cell, even missed my wife's nightly "coming home from work" call. Yes, sounds like our oncologist's thinking and plan are very similar. I am comfortable with mine, as I know you are with yours.

Mel, trolling? That made me laugh actually. The doubling time is still intense, in 6 months went from .06 to 1.24, and in 3 months went from 1.24 to 5.8, that's some pretty serious doubling.

Fairwind, my views on what you asked are well known. I am on a doctor supervised V-D program, already finished 12 weeks of 50,000 units twice a week, and now one month into three of 2,000 units per day, then my GP will retest the level and see where I stand. My uro is not prone to vitamins or supplements, unless proven needed, but since my bladder bypass surgery, he has me on Cranberry Juice tablets that I take twice a day, since I am at extreme risk for constant UTI's without a working bladder.

My GP, medical oncologist, urologist, and the oncology rehab administrator, and her oncology dietician all equally feel that POM is nothing but an expensive fruit juice, with no value in aiding in cancer. They feel its just the current fad, and that there is no proven study to show any real effectiveness, but then I have said this before.

I am not a big fan of "Snuffy" or some of his wacky approaches, but have nothing against anyone who thinks he's on to something, I think some of his methods are the exception and not the general rule. He has quite a money making machine himself going on there, and more power to him.

david
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
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