Active Surveillance

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*Optimist*
Regular Member


Date Joined Jun 2009
Total Posts : 35
   Posted 6/18/2009 12:27 PM (GMT -6)   

Hi – I am a new participant and have been checking in at this forum often – this is the first time writing in.

 

I was diagnosed in Feb/09 with prostate cancer.

 

I had a 10 core biopsy and had three positive cores with a Gleeson score of 3+3 and 2% tissue involved – prostate volume 34cc.

 

When I was told the news I had cancer I was advised that I was a good candidate for Active Surveillance. Even so, the Urologist suggested I meet with a Surgeon and Radiation Oncologist to hear the other treatment options that were available, which I did do.

 

After it all, I decided to tell my Urologist I would go on Active Surveillance – he set a follow up appointment in August/09 (6 months from Biopsy) for my next PSA & DRE test.

 

Now that I have had a several weeks to investigate some more, I keep coming across cautions about missing the chance to cure and I am starting to question if I made the right decision. I am 55 years old and in good health. I seem to be having worsening urination issues – frequency and urgency – and worry that this may be a sign of trouble. There is not a single day goes by that I don’t think about this but I try not to dwell on it.

 

I would be interested to know anyone’s thoughts on what should trigger treatment.

 

I am worried my next PSA will be elevated but won’t know what is significant and what is not. I have read about doubling time but if my next PSA is up from 3.48 to 5.0 should I pursue treatment?

 

Thanks in advance for any feed back / insights.


Oct/07: PSA 2.63
Jan/08: PSA 2.32
July/08: PSA 4.30
Jan/09: PSA 3.48 / Free PSA 10%
Feb/09 - Biopsy - cancer diagnosed
Age: 55 - Status: Active Surveillance


riverbend
Regular Member


Date Joined Mar 2009
Total Posts : 39
   Posted 6/18/2009 1:11 PM (GMT -6)   
I think you have made a very reasonable choice...one that I would have made had I not lost my job concurrent with diagnosis (I wanted to have my treatment while I could still COBRA the good insurance I had...just in case my future insurance was not as good)...

What should trigger treatment? The PSA example you gave would be a good trigger. That would indicate that while your biopsy found a small sample of cancer that you likely have some cancer growing at a significant rate. I would not dwell too much on your urinary issues (unless they become too difficult to live with)....My Dr. at LLMC said that my minor urinary issues (which had grown worse over the past year) may or likely may NOT be due to the PCa.

If you choose active surveillance there could be many triggers that would make you change your mind...many are personal...

PSA rising
insurance issues
spouse issues
more research/talking to others and analyzing their treatment choices
the fact that doing nothing is driving you nuts

Everyone is different, but I believe that your choice of waiting a few months is sound and will likely not compromise your health (standard disclaimer...I'm not a doctor)
Dx T1c in April, 2009 at 45 years old after recent PSA tests ranged from 2.93-3.25
2 of 14 cores positive at 5% and Gleason 3+3... 2 cores taken from a "protuberance" were "ASAP"
Proton radiation at LLMC May-June 2009


IKE-D
Regular Member


Date Joined Jun 2009
Total Posts : 77
   Posted 6/18/2009 1:26 PM (GMT -6)   
Hi Optimist:

As you can see from my signature below, I started along your (AS) path as well. I was diagnosed at 41. Every doctor (including top radiation oncologists) I saw recommended surgery because of 'my age'. All of them advised against AS as a bad option. I hang in there for 4 years after a roller coaster with biopsies and PSAs. Eventually, the question became: Do I wait until there is need for intervention (which is the goal of AS) by which point I risk postive margins or even spread leading to multiple treatments or do I take action? The cancer may either be worse that the Biopsy reveals or less threatening. Unfortunately there is no way to tell how the cancer will behave (Please note that one of my biopsies was even NEGATIVE!). Ultimately, at 55 I think it comes down to how much you go about your day to day without worrying. Also the side effects of surgery are less when the cancer is still small and focused.

I never thought I'd do surgery. I am done now and at peace with my decision. Please weigh your options carefully and choose what's best for you. Hope this helps.

Regards
IkeD
>Age 41 (At Dx-July 05) -Psa during annual physical went from previous 2.8 to 3
>Biopsy by 'primary' Urol Aug 05 - Gleason 6 low grade. 2nd opinion at  Hopkins confirmed Dx
>Chose Active Surv (AS)- modified diet etc.
>Around Oct 07 Psa moved up to 5.5. I decide to treat at Hopkins. Not sure what kind yet. My doctor decided on re-biopsy first.
>2nd Biopsy Dec 07 at Hopkins was NEGATIVE for Pca! Nothing found in 14 cores!
>'Primary' Urologist baffled. Planned a saturated biopsy (22 cores) to settle issue once and for all. I wasn't going to do 22 cores wide awake!
>July 07 - Did MRI just for comfort. Nothing significant found. No spread. I'd live! Still in AS mode.
>July 08 - Saturated Biopsy performed. Cancer confirmed again (of course, you took 22 cores)! Same Gleason score, same grade, similar numbers but Urol says treat very soon! I am thinking not so fast - numbers are same and you told me it means not aggressive! In any case I agreed with Urol that I will go the way of the Seeds. I research seeds more and I don't like it.
>July 08 - Dec 08 I re-lapse back into AS mode but seriously researching/considering treatment options beside surgery - went on to Mass Gen and Georgetown to explore proton therapy and Cyberknife respectively. Anything but Surgery! Both experts who are about my age were unanimous in strongly declaring they will chose surgery 'if they were me'. In addition, I learn that if either if these radiation methods (and seeds too!)  failed, no backup plan (or will be complicated)! I got the message!
>Jan 09. Went back to see my doc at Hopkins. I decide to put my fate in the hands  of the 'Da Vinci Robot' then!
> May 09. Had surgery. some Pain and discomfort but normal. Pathology all clear. Gleason 6 as before. Feeling very lucky. I gambled (based on my numbers and got 4 more years!) on the slow nature of the cancer and took my time. Very happy I finally did it. Hoping for a great recovery of all 'key' functions. Great wife and family helping out.


Ripandburn
Regular Member


Date Joined Aug 2007
Total Posts : 125
   Posted 6/18/2009 1:28 PM (GMT -6)   
The recommendation for me was to not wait. The idea was that I was young (52), and that there was lots of time left for growth. I was diagnosed with a Gleason 6 3+3. My PSA had gone from a 1.0 to 3.5 in 3 years. The concern was the velocity. In reality I did not want cancer in my body, and with the PSA elevating rapidly, I did not want to play the waiting game. A person with a Gleason 6 has a much better opportunity of a complete cure then someone with 7 or higher. In my case, no matter what the outcome was with continence, and impotence, the cancer needed to go. The chance for something higher than a Gleason 6 was not want I wanted to deal with. I am coming up on 2 years in July. My PSA is still undetectable, I have no real countenance issues, and My erections are almost to the point of not having to take any drugs. In my case, it was the right decision. Be very careful. Everyone's circumstance it different.
53 years - 5' 11" 202 lbs.
T1c 3+3=6
DaVinci July 16, 2007
Bladder Sling installed during prostate removal
nerve sparing with both nerve bundles intact
all cancer contained within prostate nothing near margins
11 weeks post-op - no more pads
all PSA's since removal < .1 - Undetectable


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4274
   Posted 6/18/2009 1:47 PM (GMT -6)   
Dear Optimist:
 
Welcome and sorry you have to be here.
 
 
and another one on their guidelines for this protocol
 
 
Hopefully these will give you a little more perspective on the issue.  The only real thing I would be concerned about is your young age.  Most guidelines for this protocol state that it works best for "older" men, i.e. 60+.  Having said that, with your stats it is likely this is an early stage cancer and you have time.
 
However, if you are concerned, why not get a mid-course PSA test?  You don't even have to involve your uro...just call your family doc, tell him what's going on and ask him to order it.  I did that pre-biopsy as I was hoping for better results (didn't work!).  Anyway, that could give you a clue about velocity and might give you a little peace of mind while waiting for your August follow up.
 
Good luck...and, I hope you will stay with us.  Most of the folks on this site have had surgery...a few of us have had seeds and I don't think we have any "regulars" who are doing AS, so your persepective would be very valuable.
 
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 6/1/09.  6 month PSA now at 1.4 and my docs are "delighted"!

LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 6/18/2009 2:18 PM (GMT -6)   
Hi Optimist

Dunno...my take on this is you are at best only a borderline AS candidate. Age, number of positive cores, free PSA and doubling time... well to me, it's just too close of a call.

If I was given your stats, I would really think about getting treatment rather than waiting. If any of the numbers were different, higher free PSA, lower number of cores, doubling time longer then I would probably agree that AS would be a good option.

Just giving you my feed back.

Good luck and sorry you had to join this club, but you will get lots of good sound advice from folks here.
You are beating back cancer, so hold your head up with dignity
 
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral w/PNI - Gleason (3+3)6 Stage T1C
Robotic Surgery Sept 18, 2008
Pathology October 1, 2008 - Gleason 7 (3+4) Staged pT2c NO MX - Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
PSA 5 week Oct 2008 <.05
                   3 month Jan 2009 .06
                   6 month April 2009 .06


Squirm
Veteran Member


Date Joined Sep 2008
Total Posts : 744
   Posted 6/18/2009 2:48 PM (GMT -6)   
Active Surveillance with a PSA jump from 2.3 to 4.x in under a year??
Just my opinion, but not sure I would agree with AS. I think the PSAv would really be an issure for me, at least.

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4269
   Posted 6/18/2009 3:02 PM (GMT -6)   
Optimist,
If you are serious about active surveillance I would get a color doppler ultra sound to use as a base line. The color doppler will let you know if the cancer is progressing or if it is stable.
There are a lot of good points about active surveillance, the ability to delay or eliminate the side affects associated with all treatments. There is a small risk that the window of cure will close before you get treatment, about 5%. Annnual color doppler will reduce this small risk.
If you can deal with the thought of having cancer in your body even if it is not dangerous then active surviellance is a good choice.
JohnT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DX BPH and continue to get biopsies yearly. Positive Biopsy in 10-08, 2 cores of 25, G6 less than 5%. Scheduled Surgery as recommended.

2nd Opinion from Dr Sholtz, an Oncologist said DX wrong, path shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G 4+3 approx 2.5cm diameter.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and burining urination. Daily activities resumed day after implants.

Scheduled for 5 weeks IMRT in July

JohnT


engineer55
Regular Member


Date Joined May 2009
Total Posts : 121
   Posted 6/18/2009 5:38 PM (GMT -6)   
I am in a similar situation, what I have taken from it is there is no rush. Even my surgeon seemed to indicate that a 5 year window does not show marked results in waiting. So take your time and let it settle, so you make a good decision. One thing for sure is when you get PCA you get advice from everyone on whats best. Just don't feel you need to decide this week. The one big advantage of waiting is they do seem to be constantly improving things.
Dx'ed 5/08 one core 2%  out of 12  3+3 gleason
DREs all negative
PSA was in the 3-4 range then jumped to 7
I have the enlarged prostate, on the order of 100cc.  After taking Avodart for 3 months  my
PSA was cut in half.
I did Active S for a year but concluded that I didn't want a life
of biopsies and Uro meetings so we have
scheduled surgery for end of June 09.
Coming up quick.


CPA
Veteran Member


Date Joined Feb 2008
Total Posts : 655
   Posted 6/18/2009 5:51 PM (GMT -6)   

Greetings Optimist.  Sorry you have to be here but you have found friends.  Our presurgery stats are very similar.  My urologist who did the biopsy advised me that I had time to make a good decision and to explore my options but he recommended surgery.  He doesn't do surgery so he didn't have a "dog in the hunt" as we say.  I did choose the surgery route mainly because I couldn't stand the thought of having cancer and not doing anything about it. 

As it turned out I had a more agressive form of cancer than the initial biopsy indicated so I was very glad that we made the decision we did.  No I am about 16 months out from surgery and I am doing very well.  My doc (surgeon) calls me his star patient because I have done so well - of course he tells me I'm 15 years younger than most of his patients and that is one reason I have done so well.  Just some food for thought.  Bottom line, you have to be comfortable with your decision.  Best wishes and keep us posted. David


Age 55
Diagnosed Dec 2007 during annual routine physical
PSA doubled from previous year from 1.5 to 3.2
12 biopsies - 2 positive with 2 marginal
Gleason 3 + 3 = 6
RRP 4 Feb 08
Both nerves spared
Good pathology - no margins - all encapsulated - Gleason 4 + 3 = 7
Catheter out Feb 13 - wore pad for couple of days - pad free Feb 16
PSA every 90 days - ZERO's everytime!
Great wife and family who take very good care of me


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 6/18/2009 7:35 PM (GMT -6)   
Optimist,

Welcome to HW and our little corner of the world.

The facts are that you now have diagnosed PC, based on a biopsy a Gleason 6, low core %, which on the surface sounds good. The only problem I see with the Active program is that it is always a gamble. You have to compensate that a low grade gleason 6 is all you have for now or in the near future, or that the biopsy missed some more serious cancer areas in your prostate. Often, after surgery, if one chooses that path, their Gleason is upgraded, seldom is it downgraded (though it has happened that way). If you really have some Gleason 7 in you or higher undected by your biopsy, then waiting any serious length of time is not a good thing in my opinion.

Right now, as Tudpock said above, you have more primary treatment options availabe assuming your PC is as low grade as indicated. Later on, if it grows, or if it is worse in its known nature, your options will be less.

The whole trick is taking care of the cancer in the best manner before it can escape the prostate itself, and that is a big unknown to you the patient at any given point in time.

Not telling you what to do, but I would check the PSA again in no more than 3 months from the last one, and if it has increased by .35 or higher in that short a time, I would think at the least, another biopsy should be done, to make sure that it is still just a Gleason 6 situation.

With your current stats, and your prostate size, you could be a good candidate for seeding. I wish you luck as you think through your options and plan ahead for your bout of PC. One advantage of having surgery, either robotic or open, is that usually you will know the true extent of your PC once the prostate and other bits/pieces have been removed and you see the results of the final pathology report.

We are here for you, whatever you decide to do.

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, 5/9 .10 doubled in 3 months, new test in six weeks, then possibly off for salvage radiation
 
 


BooMan
Regular Member


Date Joined Oct 2006
Total Posts : 27
   Posted 6/18/2009 9:37 PM (GMT -6)   
Optimist,
Welcome.  I am one of the few on this board in active surveillance.  I don't post much.  I got tired of hearing that I was in denial, playing russian roulette, or afraid to face the fact that I have a PCa diagnosis.  Since you've asked for feedback or insights, here goes.
A PSA test does not diagnose cancer.  It's one of the strongest indicators of the possibility of cancer but only a biopsy will diagnose it.  A rise in PSA shouldn't trigger treatment.  It should trigger a biopsy.  A PSA velocity of more than .75 ng/ml in a year is one common measure of when a biopsy should be called for.  A PSA doubling time under 3 years is another common trigger for a biopsy.  PSA measurements can go up or down for many reasons.  Looks like yours jumped quite a bit in six months then went back down some.  Only a doctor should speculate as to the reasons for that.
PSA density is another measure that is used to predict if the predicted size of your cancer favors active surveillance.  The second link that Tudpock provided has a paragraph about the "Epstein Criteria" you should read.  Your density comes out just over .1 by my figuring and the 3 positive cores would consitute what they refer to as an adverse finding from the needle biopsy.  You didn't mention if you got a second opinion on reading the biopsy slides.  Reading the slides is somewhat subjective.  I believe a second opinion is worthwhile and consider it essential.
You didn't mention clinical stage, which is determined by what the doctor feels on the DRE.  He may feel nothing, something on one side, or all over.  A significant finding on the DRE would have tipped me away from AS.
You mentioned urination issues as a cause for concern.  See your urologist.  He can help ease your mind or find the cause, we can't.
Ill tell you what will trigger treatment for me.  A biopsy that has a Gleason sum greater than 6.  More than 2 cores containing cancer. Any single core containing cancer in 50% or more of the core. In addition, if my PSA density increases above .1, if the cancer can be felt on the DRE, or there is a significant rise in my PSA, I will   get a  saturation biopsy or color doppler guided biopsy.  It is absolutely possible for a needle biopsy to miss the cancer or a significant portion of it.  I've had PSA testing and DREs every 4 months and yearly biopsies since my diagnosis.  So far, so good.  Good luck to you in whatever choice you make.
Boo

Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4274
   Posted 6/19/2009 5:43 AM (GMT -6)   

Hi Boo:

Personally, I was really glad to see you weigh in on this.  Unfortunately, some of the guys who have chosen alternatives to surgery (e.g. realziggy using TFT) have left this forum for the reasons you mentioned.  I try to share the Epstein Criteria when the subject of AS comes up but my contribution on this subject is only theoretical while yours in real.  It sounds like you are following the criteria yourself pretty closely and doing well...congratultions!  Had my stats been better, I would have loved to have your option.

Anyway, I do see fairly frequent questions re AS and I hope you will post more frequently to help those folks who may be able to consider this.

Regards,

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 6/1/09.  6 month PSA now at 1.4 and my docs are "delighted"!

*Optimist*
Regular Member


Date Joined Jun 2009
Total Posts : 35
   Posted 6/19/2009 6:57 AM (GMT -6)   
Thanks to all for the feedback & comments. It is nice to have a place where I can discuss this. I have only shared this with my Wife and one neighbour. My parents are quite elderly so I dont want to burden them with this. I have not let anyone know at my work either out of concern I will be viewed as damaged goods - lots of cuts being made these days - dont want to give any reason that I may not be able to perform my duties. My plan for now is to wait till August for my follow up PSA - at that time I will request a follow up biopsy - likely in February - at the one year anniversary of the first one. Hopefully no significant changes will appear but if they do I will likely opt for surgery. I will update my situation as I get news. Thanks again.

Oct/07: PSA 2.63
Jan/08: PSA 2.32
July/08: PSA 4.30
Jan/09: PSA 3.48 / Free PSA 10%
Feb/09 - Biopsy - cancer diagnosed
Age: 55 - Status: Active Surveillance


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 6/19/2009 8:20 AM (GMT -6)   
boo - thanks for a well thought out post on the subject, sounded very even handed to me, and hope it continues to work well for you

optimist - sounds like a sensible plan for you to follow,please keep us posted as you continue to move forward, my best wishes to you.

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, 5/9 .10 doubled in 3 months, new test in six weeks, then possibly off for salvage radiation
 
 


verboten1
New Member


Date Joined Jul 2008
Total Posts : 3
   Posted 6/19/2009 1:06 PM (GMT -6)   
http://www.nytimes.com/2009/03/19/health/19cancer.html?_r=3&hp

engineer55
Regular Member


Date Joined May 2009
Total Posts : 121
   Posted 6/19/2009 3:16 PM (GMT -6)   
Interesting study, I understand they are also recommending that people to go back to smoking because after 10 years there is not a marked changed in mortality rates of smokers and non smokers.
Dx'ed 5/08 one core 2%  out of 12  3+3 gleason
DREs all negative
PSA was in the 3-4 range then jumped to 7
I have the enlarged prostate, on the order of 100cc.  After taking Avodart for 3 months  my
PSA was cut in half.
I did Active S for a year but concluded that I didn't want a life
of biopsies and Uro meetings so we have
scheduled surgery for end of June 09.
Coming up quick.


verboten1
New Member


Date Joined Jul 2008
Total Posts : 3
   Posted 6/19/2009 3:21 PM (GMT -6)   
engineer55 said...
Interesting study, I understand they are also recommending that people to go back to smoking because after 10 years there is not a marked changed in mortality rates of smokers and non smokers.


As if it were all quacks being quoted, they weren't. You just made yourself look foolish.

LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 6/19/2009 3:45 PM (GMT -6)   
verboten1...do you have prostate cancer....can you post your stats so that others can see where the thought process of your posts are coming from?

I maybe off base but your last post was a little uncomplementary to the previous member's post. If you would elaborate more, maybe other folks like me would understand your sentiment better.
You are beating back cancer, so hold your head up with dignity
 
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral w/PNI - Gleason (3+3)6 Stage T1C
Robotic Surgery Sept 18, 2008
Pathology October 1, 2008 - Gleason 7 (3+4) Staged pT2c NO MX - Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
PSA 5 week Oct 2008 <.05
                   3 month Jan 2009 .06
                   6 month April 2009 .06


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 6/19/2009 3:59 PM (GMT -6)   
vertoten1,

Appreciate you being here, but let's show a little common courtesty and respect to a fellow poster. We are open to all opinions from many people and sources, but just needs to be presented in a non-confrontational way, okay?

Do you currently have a dx. of PC? If so, please give us some stats on your so we can see where you are at in your journey.

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, 5/9 .10 doubled in 3 months, new test in six weeks, then possibly off for salvage radiation
 
 


Geebra
Regular Member


Date Joined May 2009
Total Posts : 476
   Posted 6/19/2009 11:02 PM (GMT -6)   
In response to the New York Times article - look at the survival rates around the world. (See my post http://www.healingwell.com/community/default.aspx?f=35&m=1507504 ).

There may not be a marked difference in 10 year survival, but for many of us here in our 40's, 50's, 60's and probably some 70's, 10 years is just not long enough. I had no symptoms, and normal DRE. If not for PSA tests, I would have metastatic cancer by now with life expectancy certainly less than US average of 75+.

As Mark Twain said, there are lies, darn lies, and statistics. I feer we will see a lot more of these "studies" now that the cost of healthcare is in the forefront of the political process. Can you spell "rationing"?

Previous 5 biopsies over 4 years negative

PSA going from 3.8 to 28

Father died from PCa @ 78 - normal PSA and DRE

Dx Nov 2007, age 46

PSA 29, Gleason 4+4=8

Decided to participate in clinical trial at Duke

6 rounds of chemo (Taxotere+Avastin)

1/8/2008

33.90

1/11/2008

29.50

1/31/2008

38.20

2/21/2008

32.00

3/13/2008

26.20

4/3/2008

26.60

4/24/2008

20.60

followed by RRP at Duke (Dr. Moul) on 6/16/2008

Pathology

Gleason downgraded 4+3=7

  Duke: T2c N0MX, one positive margin

  Sloan Kettering: T3a N0MX, extraprostatic extension, two positive margins

PSA undetectable for 8 months, then

2/6/2009

0.10

4/26/2009

0.17

5/22/2009

0.20

6/11/2009

0.27

6 Months ADT started 6/12/2009

IMRT to start mid-Aug


Franchot
Regular Member


Date Joined Jun 2009
Total Posts : 131
   Posted 6/20/2009 3:27 AM (GMT -6)   
Optimist,

I am also a member who is doing Active Surveillance. My stats are close to yours. I'm 53 with a father who had prostate cancer--he did not die of prostate cancer or any cancer.

I was diagnosed in January of this year after a biopsy. My PSA rose from 3.7 to 5.2 over two years and dropped down to 4.8 last month. I have an enlarged prostate, but don't have any urinary problems.

Once I discovered I had prostate cancer I researched all treatments options and consulted with many doctors before finally settling on proton therapy at Loma Linda. Before treatments began, I looked into one final option--Active Surveillance. I have the same doctor (Dr. Scholtz) as John T who posted in this thread. Dr. Scholtz put me through a large number of tests and had me see some other specialists, just to make sure that I was a good candidate for Active Surveillance--that's how rigorous the screening is (and should be) for anyone considering Active Surveillance. Luckily, I fell within the slim guidelines that an Active Surveillance patient must adhere to and I canceled my proton therapy.

Now, I'm not out of the woods because I still have prostate cancer, but I rarely think about it because I feel healthy and adhere to good nutritional choices in my life. I still have to get checked out several times a year, but I feel I'm in good hands of a doctor who will immediately start arranging some sort of more aggressive treatment should he think it's advisable. Sounds like your doctor is also keeping a watchful eye at how fast the cancer is growing so that should give you a feeling of relief.

lawink
Veteran Member


Date Joined Oct 2006
Total Posts : 621
   Posted 6/20/2009 8:48 AM (GMT -6)   
Hi there Optimistic!
Sorry you have to be here, but welcome! In our case we chose for action sooner than later and had the cancer removed using surgery. Pathology showed a second more aggressive cancer present that no one knew about . . .and still Bob needed no further treatment. Now it is over 2 years behind us, and NOT something we are waiting to deal with in the future, which in our case leads to a much calmer frame of mind.

Good luck and keep us posted.

;o) Bob & Linda
Bob (62) - Laproscopic Prostate Removal Sept 27, 2006 at age 60.
2 of 12 malignant biopsy samples - gleason 3 + 3 = 6.
Pathology - Gleeson 3 + 4; stage T2; cancer completely contained, even a second more aggressive, previously undetected cancer) PSA UNDETECTABLE Nov 2006; Feb, May, Oct 2007; May and November 2008.  WHOOO HOOOO! 
Bob also has two secondary conditions -- Polycythemia (elevated red & white cells & platelets) and . . Myelofibrosis) -- If anyone has experience with or information on these, please email us.


TeddyG
Regular Member


Date Joined Apr 2009
Total Posts : 133
   Posted 6/20/2009 6:59 PM (GMT -6)   

Hello Optimist, et. al,

Many of us were in the same circumstance that you find yourself in, i.e., what to do, if anything. My stats were similar and after reading Dr. Walsh's book and discussing the situatuion including all of the variables you cited, I decided that I wanted it out of me. Once the decision was made, life became somewhat more tolerable as the constant anxiety about what to do was over. After reading many stories on this website, I have very few regrets about the decision. My stats ended up being better than expected (though the surgery and recovery are similar for most of us) but the doc said something that was compelling about the biopsy results: "they could find the needle in the haystack or only the tip of the iceberg."

Keep studying, rely on your wife's perception to keep you objective, make a decision....don't look back.

 

Best wishes

TeddyG


Background:
Age 55, two teens, very fit cyclist (avg 2000+ miles per year) and weight, diet, etc. consistent with good habits. Stressful job as attorney; very supporting wife who is helping me through every stage of this war.
Stats:
2006 PSA - 1.5
2007 PSA - 2.3
2008 PSA - 5.3 (18 mos.)
2009 Jan. 20 - Biopsy 12 samples
        Feb 3 Dx 2/12 samples positive, low volume  (5% and 7-10%)
Gleason 3+4, later downgraded by second opinion at Johns-Hopkins to 3+3, but "it's still PCa" as my Doc said.
Laproscopic surgery April 9,  University of KY Medical Center, Lexington, 3 days in hospital, catheter removal April 21.
Pathology: clear margins, no cancer in prostate: told that this is very rare and Doc has only seen it in 3 out of over 1400 cases; I rearched the concept of "vanishing cancer" and found a tumor classification of tP0 and asked Doc if it applied to me. He said that it was unlikely because if a pathologist had done a much more detailed analysis of the tissue, he would likely find more foci somewhere, and biopsy found "needle in the haystack as opposed to the tip of the iceberg"; Nevertheless, it is a blessing;
Regardless of the science, my family says "miracle."
Now working w/ post-surgery issues....
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 6/20/2009 7:24 PM (GMT -6)   
Teddy, your's still is an amazing and unique story among us.
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, 5/9 .10 doubled in 3 months, new test in six weeks, then possibly off for salvage radiation
 
 

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