Active Surveillence in secondary and tertiary choices

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Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 3/18/2009 2:20 AM (GMT -7)   
Active surveillence (AS) has been a hot topic here and all over the web and it will stay that way.  The discussions here have been about it as a primary choice for low grade small tumors.  It has brought into play articles and studies that ask the question "Are we overtreating prostate cancer".  This question is applicable after a primary treatment as well.  Take my case for example.  I had pT3b, N0, Mx after surgery.  No doubt about it, my cancer was spreading outside the prostate and there likely was micro-metastisis but my PSA went to undetectable after surgery before I added adjuvant therapies. 
 
I had to ask do we add adjuvant therapies or wait?
 
For me it was pretty clear that I had a ten year relapse rate of between 75% and 90% if I chose to do nothing further after surgery, but only 20% in the five year rate.  Choosing to do nothing was still a choice, but I didn't like those ten year odds.  However I am still in a "controlled" remission and it isn't known if it's because I am on hormone therapy and had radiation as adjuvant therapies, or that the surgery would have been effective on it's own in achieving the same result.  I do have some friends here that have already relapsed with smaller tumors and then started salvage therapy.  But the question of choosing adjuvant or waiting for salvage therapy is a decision to proceed with Active Surveillence or not.  The same is true of intermittent hormone therapy.  Do we stop HT and wait or continue it?  In any case the question of "overtreating" is real at any phase of treatment. 
 
For the record, there is data in an ongoing study behind my shotgun approach that shows I have improved my chances.  But there have been some pretty harsh side effects to go along with my decision.  Many here, I presume, would have skipped this part of treatment if they knew what what surgery, HT and RT are capable of doing.  I believe that the risks were worth taking...But, please, don't just look at my decision, it is just an example.
 
Your thoughts appreciated...
 
Tony


Age 46 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (January 13, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25353
   Posted 3/18/2009 5:50 AM (GMT -7)   
Tony, I still think what path you took was perfectly right for you and your stats. That was a tough call to make, and taking the agressive pro-active path speaks well of dealing head on with cancer.

I still say, and have no one in mind by name, that there are very educated men here, that in reality, are still in some sopshisicted form of denial in their "watching" programs. Inside, they are either fearful of major surgery, or devestated by the thoughts of incontinence and ED problems, or perhaps fearful of their mortatlity. I think some, experience a little of each category.

This is a natural reacation, very human for many people. But wrapping one self up in a complex world of conflicting data, stats, percentages, odds even to convince yourself that you are really ok when you might not be, is a potentially dangerous place to have your minds set.

Cancer does no favors, gives no breaks, doesn't care if you are 39 years old, have a beautiful wife, and 3 lovely kids. It respects no one at no time. If you have proven PC in your body, you can argue all you want for it being low grade or indolent or non agressive, but it is still PC, and it will grow, and it will move.

The longer you let it lie, sure, you can fool yourself and think you are ok, but the cancer is still there, growing by the day. Are you sure enough of your research that you know when it will cross the line and is no longer contained to the prostate? Are you that big of a gambler? Are you that educated to know the difference?

I just have strong views on this subject. It doesn't mean its not safe to wait a few months once dx with a really low grade dose of PC, so that you can weigh out your treatment options and get plans in place. That is still ok in my opinion.

I don't want to see another advanced case in here, or anywhere else. I don't want to hear about another brother who didn't make it. I do not believe we are living in an age of "overtreatment" as I have seen argued on this board.

It's PSA screenings, and earlier ones, that are bringing what seems to be more and more cases of PC to the surface. But you know what, with or without testing, the cancer would still be there, eating away at the health of some poor man. Something to think about.

David in SC
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9 .05, 6 month on 5/9
 
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 3/18/2009 8:14 AM (GMT -7)   
Thank you, David,
The point I am trying to make is that it is not if we do Active Surveillence but when. Everyone at some point is in this phase. You are right now in that phase, for example. You have had surgery as your primary choice. And your results were such that you can safely choose to do nothing between PSA tests. It is the typical post surgery mode to be in Active Surveillence..

Not the case after surgery for many. And is it overtreating prostate cancer when one chooses adjuvant therapy even though there has been no relapse? (the mere definition of adjuvant therapy). I think it's obvious in my case that I had to be proactive. But there are some pT3a guys here or T2C guys with focally positive margins that are doing the same that I have done. The question of overtreating the disease could possibly include me if I had chose the Taxotere option when it was offered to me. Certainly on top of everything else I have done, I could be severely impaired by now.

(LOL no comments about my mental state please........LOLOL)

Tony
Age 46 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (January 13, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25353
   Posted 3/18/2009 8:25 AM (GMT -7)   
I dont think you overtreated at all.
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9 .05, 6 month on 5/9
 
 


Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 3/18/2009 8:58 AM (GMT -7)   
Tony-
I think you know how I feel, being in a similar situation with my father. His PSA was only between 5.5-6.0 and had already spread to a nearby lymph node. Active surveillance, would not have been an option for him. Does he hate the side effects from treatment? Absolutely. Is he counting down the days to his HT vacation? Absolutely. My father's PSA also dropped to undetectable after surgery at .05. Could he have waited, some say yes, but because of the lymph node involvement he too risked micro-metastasis and local spread. I have read that PC once spread to the lymph nodes is not curable, but I have also heard of cases where it has been cured with radiation and HT....well at least remission 14 plus years out. I am hoping and praying both of you are cured and will have permanent HT vacations very soon. You did the best thing for you with the information provided and as David says, cancer doesn't wait and doesn't care. In some cases active surveillance might be an option, but it wasn't in my father's case.
Father's Age 62 (now 63)
Original Gleason 3+4=7, Post-Op Gleason- 4+3=7,
DaVinci Surgery Aug 31, 2007
Focally Positive Right Margin, One positive node. T3a N1 M0.
Bone Scan/CT Negative (Sept. 10, 2007)
Oct. 17 PSA 0.07
Nov. 13 PSA 0.05
Casodex adm. Nov 07, Lupron beg. Dec 03, 2007 2 yrs
Radiation March 03-April 22, 2008- 8 weeks 5x a week
July 2, 08 PSA <.02
Oct. 10, 08 PSA <.02
Praying for a cured dad.

Co-Moderator Prostate Cancer Forum


Sleepytime
New Member


Date Joined Jan 2009
Total Posts : 12
   Posted 3/18/2009 9:58 AM (GMT -7)   
With my pre surgery numbers and post surgery pathology I am still trying to figure out the best course for myself. My doctor strongly recommended that I go on Lupron for 6 months, but strongly recommended against adjuvant radiation. His reasons... the Lupron will help my body rid itself of possible micro-metastases, but with clear margins he wants me to stay away from all radiation to avoid possible radiation induced cancers AT THIS TIME. I know my cancer is aggressive so I want to treat aggressively, but judiciously... a difficult balance.
Age 54 - 6'2" 200lbs
Overall Heath Condition - Good

PSA monitored every 3-6 months starting 04/01/04
Important readings and actions:
10/18/04 - PSA 03.48
05/24/06 - PSA 04.92 - 08 sample biopsy: negative
05/10/07 - PSA 16.84 - 14 sample biopsy: negative
09/02/08 - PSA 26.54 - 16 sample biopsy: positive - GS 4+3=7 - Stage T2b
11/11/08 - PSA 37.95
11/17/08 - PSA 40.98 - (doubling time less than 8 weeks)
11/21/08 - non-nerve sparing Laparoscopic radical prostatectomy

Pathology GS 4+5=9 - Stage T3b N0 MX - bilateral lobes - perineural and seminal vesicle invasion - surgical margins: negative - largest tumor 2.1 CM

Catheter in for four weeks - only minor stress incontinence after 6 weeks

01/19/09 - 1st post-op PSA: less then 0.1
01/30/09 - started hormone therapy


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25353
   Posted 3/18/2009 11:12 AM (GMT -7)   
Who are you talking about, Ohio State? That's twice recently after I posted that you have managed to make a cowardly snide remark toward me it seems. I am the biggest advocate of free choice in treatment, anyone that reads my posts on a regular basis knows this. Also, I always show respect to all that are here, and I have never once asked anyone to agree or disagree with me. I value all opinions. My PC, for your information, is my 4th time in a little over 10 years dealing with a potentially malignant cancer, and the other 3 events were harder because there were only 39 known cases of it ever in the US at the time. And I went through multiple surgeries related to the other cancers, and some very grueling radiaton for 35 days, of which left me with perm. side affects related to the radiation. Do I claim to be an expert? No, not here, not in my profession, not in my real life. I am a writer by craft, so yes, I do post a lot, I find comfort in that, and I try to help anyone along my path in life, including here. I already blocked you from sending me any more annoying and snide and cowardly e-mails to me, so please, at least here in a public room, show some manners instead of your snide comments. Thank you.

David in SC

P.S. Or if you wish, OhioState, set up a poll here, see if people would like me to leave or stop posting, or ask how many people think I may have helped or comforted them a little bit.
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9 .05, 6 month on 5/9
 
 


Paralleli
Regular Member


Date Joined Jul 2008
Total Posts : 123
   Posted 3/18/2009 1:10 PM (GMT -7)   
Tony -

An interesting topic. I'm in a "wait and see" mode right now myself after primary treatment with IMRT. When my PSA went up again, my initial response was "Time for the HT". However, the Docs’ convinced me to wait a bit. There is so much conflicting information out there concerning, in my case, RT. What is failure? Three consecutive rises, n+2? How long do bounces last? You know the drill…..

I never considered AS going into the whole thing a few years back. For some reason I’m a bit more comfortable with waiting a bit now before taking action again. Maybe I’m just a bit tired of the mental grind. I can hardly imagine what others have been through and I am always impressed by the positive attitudes I see here. Anyway, I’m waiting it out for the next eight weeks or so and hoping for the best. However, I REALLY need to start looking more deeply into possible options. I’m not in denial, exactly, just a bit burnt out on the whole thing right now.

Best …

PS

OhioState and Purgatory:

Mellow out boys! You’re guys stressing me out, and look what stress did to Don Imus!
53 yrs
PSA 4.8
T1c – Gleason 3 + 3
IMRT 1/07 thru 2/07 (42 treatments)
PSA 6/07 – 0.76
PSA 12/07 – 0.36
PSA 6/08 – 0.72
PSA 12/08 - 1.02 (Uro & Rad Onc want me to give it 3-6 more months before freaking out.  O.K. say I.)


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 3/18/2009 3:01 PM (GMT -7)   
Guys please,
My discussion is not if I did the right thing. It is "when is AS best used in progressive disease cases?"

Paralleli, Sleepy, and DD,
Right on topic. This is precisely the input I was seeking. We have some tough decisions with prostate cancer that lie ahead. There is no question we should be mapping out future steps. And waiting is still a decision that is not easy.

David and Andrew
You guys both contribute very well when it is guided against the disease and in support of others. Our enemy is cancer. As Divo says, we are writing our own book and we are our own hero's in it. Our positions should be respected. And we should respect other positions even if we don't agree with them. Let the peace prevail...

Tony
Age 46 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (January 13, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4012
   Posted 3/18/2009 3:08 PM (GMT -7)   

Dear OhioState:

Assuming you were referring to David from SC (as he thinks you are), my observations of his posts would say you are off base.  I have never seen him say that his protocol is the only way.  True, he has strong opinions about being testing and getting treated, but I have always seen openness on his part re the various protocols.  My protocol is different than his and he has never implied in any way that his was in any way better.  And, I have never seen David try to pass himself off as an expert. 

Maybe you should read his posts carefully before being so judgemental.

Tudpock

 

 

 


Age 62
Gleason 4 +3 = 7
T1C
PSA 4.2
2 of 16 cores cancerous
27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 3/6/09.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25353
   Posted 3/18/2009 3:41 PM (GMT -7)   
Thank you Tudpock,
I only apologize for taking the bait today. Look at how few had posted to Tony's original thread here, and it's very obvious whom OS was referring to. And I do find it a form of cowardnice to hide behind words knowing you will never meet the person you are insulting.

I am an expert at nothing. I've been doing accounting, finance, and advance IT work for almost 30 years, and I learn new stuff every day.

Yes, I have strong feelings about testing, I don't want to see any man go through what I have gone through, or any of the others here at HW, and that's just in reference to PC, let alone anything else health related.

My treatment method was the only real choice I had at the time. I could have gone to Atlanta or Charlotte for robotic, but as it turned out, surgical difficulties would have forced the surgeon to abort the robotic procedure. I was interested in "seeds" like you did, but I was considered outside the acceptable parameters at least in my area. As far as radiation before surgery, very few people, doctors and experts alike, feel that is a bad choice, due to the poor quality of post radiation salvage surgery. Plus my dr. felt that I would be a contained Stage II at this point. But aside from that, that is just how it worked out for me.

Is mine contained, I sure hope so. I will be worrying about it for years, the rest of my life. And I am trying to still learn all I can from other treatment methods and protocals, in case it does come back. I don't want to be caught off guard if it does.

And trust me, my opinion(s) aren't worth anything more than anyone elses, I believe that with all my heart.

David in SC
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9 .05, 6 month on 5/9
 
 


Ralph Alfalfa
Regular Member


Date Joined Nov 2008
Total Posts : 469
   Posted 3/18/2009 5:57 PM (GMT -7)   
"...and in this corner,"

Just as in fingerprints, there are no two sets alike. I'm sure there is a standard form of treatment most MDs will follow when dealing with certain numbers. But, like fingerprints, each person's case is different. They read the articles just as we do and put that knowledge to the best use they know how. Is it always applicable to every case? No. That's why as the patient it is imperative to be as pro-active as you can. Second opinions, treatment options, etc.
The ball is in our court and it is ultimately up to us as how to play it. I had read, and heard, that a PSa of over 4 was something to be concerned about. When my first test came in at 13.5, the second,one week later,at 14.5, then that told me all I needed to know. If I break a leg, I'm going to the orthopedic doc. I'm one to sit around and wait to see what happens next...but that's just me. I have no problem with others who have chosen different courses of treatment. What you do is up to you, because, after all, you are going to do what you want. Selfish? I don't think so.You only go around one time on this earth and,ultimately, you do the best you can. That's all anyone can expect of you...anything more, well...phooey on them.
I guess I am a bit selfish. But my house is paid for, my kids college educated at my expense, married with children and doing well, and I think it's time for me to do what I want to do and enjoy what time I have left on this mortal coil. So, it's off to the golf course with my youngest son and I'm going to thoroughly enjoy it and not let this bump in the road affect me anymore until it may rear it's ugly head again. If that happens, then I'll deal with it. Cheers.
Bob
 AGE:57
 Dx: October,27(the day after my birthday)
 Psa 14.5
 Gleason:(4+3) 7 T1c
 Bone scan:Negative
 Cat scan: Negative
 Biopsy: 4 of 12 positive, left side, pre-cancerous on the right.
 Confined to prostate.
 DaVinci Jan. 19th, No lymph node involvement, all margins clear.
 8 week PSa <0.01

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