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Posted 6/18/2009 5:27 PM (GMT 0)
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.
Posted 6/18/2009 6:11 PM (GMT 0)
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)
Posted 6/18/2009 6:26 PM (GMT 0)
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
Posted 6/18/2009 6:28 PM (GMT 0)
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.
Posted 6/18/2009 6:47 PM (GMT 0)
Dear Optimist:

Welcome and sorry you have to be here.

Here is a link from Johns Hopkins on active surveillance http://www.johnshopkinshealthalerts.com/alerts/prostate_disorders/JohnsHopkinsProstateHealthalert_1903-1.html

and another one on their guidelines for this protocol

http://urology.jhu.edu/prostate/advice1.php

...and here is another one on PSA velocity http://www.johnshopkinshealthalerts.com/alerts/prostate_disorders/JohnsHopkinsProstateDisordersHealthalert_3031-1.html

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

Posted 6/18/2009 7:18 PM (GMT 0)
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.
Posted 6/18/2009 7:48 PM (GMT 0)
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.
Posted 6/18/2009 8:02 PM (GMT 0)
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
Posted 6/18/2009 10:38 PM (GMT 0)
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.
Posted 6/18/2009 10:51 PM (GMT 0)

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

Posted 6/19/2009 12:35 AM (GMT 0)
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
Posted 6/19/2009 2:37 AM (GMT 0)
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

Posted 6/19/2009 10:43 AM (GMT 0)

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

Posted 6/19/2009 11:57 AM (GMT 0)
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.

Posted 6/19/2009 1:20 PM (GMT 0)
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
Posted 6/19/2009 6:06 PM (GMT 0)
http://www.nytimes.com/2009/03/19/health/19cancer.html?_r=3&hp
Posted 6/19/2009 8:16 PM (GMT 0)
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.
Posted 6/19/2009 8:21 PM (GMT 0)

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.
Posted 6/19/2009 8:45 PM (GMT 0)
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.
Posted 6/19/2009 8:59 PM (GMT 0)
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
Posted 6/20/2009 4:02 AM (GMT 0)
In response to the New York Times article - look at the survival rates around the world. (See my post https://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"?
Posted 6/20/2009 8:27 AM (GMT 0)
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.
Posted 6/20/2009 1:48 PM (GMT 0)
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
Posted 6/20/2009 11:59 PM (GMT 0)

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

Posted 6/21/2009 12:24 AM (GMT 0)
Teddy, your's still is an amazing and unique story among us.
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