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2 Year PSA Results - Pretty much expected

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Posted 10/7/2010 4:54 PM (GMT 0)
LV-TX,

I'm with you on this one.  We have similar stats, but I had negative margins.  I'm waiting until at least 0.4 before starting SRT.  I would like to research more data regarding the potential for the onset of secondary cancers (sometimes occurring 8 - 10 years or more later) resulting from radiation treatments for primary cancers.  

Posted 10/7/2010 5:25 PM (GMT 0)
I don't understand the "denial" label either.

Someone in denial wouldn't be on this site, wouldn't have started this thread and sure wouldn't have investigated their options like JT has done.

I don't have an opinion to share, just want to say I find the discussion very interesting.

Posted 10/7/2010 5:58 PM (GMT 0)
Les:

http://www.prostate-cancer.org/education/whats_your_type/

Go down 2/3 of the way and they have a table defining these terms.

Your Gleason 7 automatically excludes you from the low-risk category.

You will also find it here:

http://www.brachytherapy.com/risk-factors.html

Again, your Gleason score is NOT 3+3. It may ACT like it, but it IS A 7.

All the other factors look okay.

As I said, BY DEFINITION you are NOT low risk.

I'm sure if you search far enough you might find some article somewhere that says you are LOW risk...somewhere. So, yes, your continued insistence that you are low risk does make me think you are in denial.

Anyway, we are dealing with important terms/definitions/even semantics. Les, this is a support group/discussion group. I feel I am crossing the line a bit by perhaps getting argumentative. We are all in this together fighting this beast. I am dealing with the exact same fears/issues you are. In so do NOT want to do SRT!

Good luck.

Mel

 

Posted 10/7/2010 5:59 PM (GMT 0)
les,

i have no choice but to respect your decision and choice, being re-tested in 3 months is a good next step. i wish and hope your thinking proves right for you. at no point did i expect you to do what i did, that was never the point. i had no choice, no safety level, nothing. i am still with you.

david in sc
Posted 10/7/2010 6:04 PM (GMT 0)

I'm with Dave7 How wonderful and interesting this discussion has been.

Thanks to all.

Posted 10/7/2010 6:54 PM (GMT 0)
Mel...you are definitely not crossing any line with me or with the discussion here. A friendly debate is extremely important for all that read this thread.

There isn't any line drawn in the sand that would dictate when any treatment, primary or secondary should begin. We all learn one way or another from each others experiences...which is why I post my experience here. Over the years we have come to learn what high risk cancer means. At the same time we have learned what intermediate risk can mean. Intermediate risk is just that intermediate...not high risk. We also know what low risk means. It means that our cancer is safely monitored and it becomes the choice of the patient to elect further treatment. How many times has it been said, doctors treat the anxiety more times than the disease itself. If a patient is going to feel better by having something done...then do it. How many times has a person said they wanted it out because they couldn't deal with the fact that they have cancer...even though it was low grade and would never cause them any problems in their lifetime.

This discussion is centered around recurrence. I have confirmed recurrence that was suspected nearly two years ago with a rising PSA after surgery. This is one of the benefits of ultra low testing. But yes it causes alot of anxiety in men when they see their numbers on the rise. Fully understandable. The best way to deal with the anxiety is to learn how others are dealing with theirs. Unfortunately all we read about when there is a recurrence, is the treatment method which most often is SRT. Then the debate centers on how soon after detection and what gry amount is delivered. Then the discussion leads to side effects...worry of secondary cancers and so forth. I don't believe that is the message that should be sent. It clearly causes more anxiety and worry in men when all they read are the stories of needing to treat it soon as possible. Typically recurrence was with high risk cases and that would be the protocol. But too many men are having surgery with very low numbers. This will raise the recurrence numbers and more of them will be due to surgical procedures rather than biological spread.

So where is the discussion on doing Active Surveillance with recurrence. I can't find any and why is that. Is it because I am bucking traditional protocols? Yep, I guess you can say that. But remember...it wasn't too long ago that Active Surveillance prior to surgery was frowned upon too. So with the improvement with treatment in the salvage setting, side effects are better, dosage is targeted better which all leads to rethinking stragedies with recurrence just like what has been done with primary treatments.

I hope this discussion continues because I believe it is important and unfortunately one that many men whom have opted for surgery will face. Cancer is hard enough to deal with the first time let alone the second time. But if we have to deal with it the second time, then understand what it means before automatically jumping on the protocol of hit hard and fast. You may have too....but then you may not.
Posted 10/7/2010 7:05 PM (GMT 0)
Les - lets go drink some cold ones turn
Posted 10/7/2010 7:07 PM (GMT 0)
10-4 good buddy...except this time it's going to be something straight up and probably a double...lol
Posted 10/7/2010 7:39 PM (GMT 0)
Les:

I am pleased that you are taking my comments in the spirit intended, one of discussion for our mutual benefit.

Yes, there are all kinds of decisions to be made with this disease. I think you are bucking protocol.- The concept of having your own ideas and thinking out of the box is very...well...sexy? Maybe "appealing" is a better word. I think Zufus has done this for years and with lots of success. But keep in mind that the reason things become part of a "protocol" is that they are generally accepted as giving one the best chance of survival.

There was another line that I had to deal with. My pathology was not good at all. I had a Gleason 4+3. I had a focally positive margin. I had ECP and PNI. On the positive side, SVI was negative and clear lymph nodes. The decision I had to make was: should I have adjuvent RT? My Ford doctors pointed out that with someone like me, they felt I could wait. Yet Jon Epstein at Hopkins, who did a second reading of my pathology (confirming the first reading) indicated that he recommends adjuvent. I think Umich also recommends adjuvent but I am not sure about that (I have a consultation there with a top-notch medical oncologist on 11/1/10 and I might ask, although thats water under the bridge now). I elected NOT to do the adjuvent. My logic was this: If I knew for sure that I would need RT, then all the studies show a better chance with adjuvent RT. But the deal maker for me was the high probability (huge according to the MSK nomograph; but I figured it was 50%) that I might not need RT at all. So, I gambled.

But, in your case, you definitely have a reoccurence and in fact your current PSA is above the 0.20 threshhold. I think that tilts the decision, but we all have to decide on our own. I have enough trouble deciding what I should do!

You said you were going to do another PSA in 3 months. Two questions: since you are in the "danger" territory, why wait so long? The other question: you are hanging your hat on the long doubling time. So, what do you do if it is say 0.40 or some similar increase? My concern is that since we know things are progressing, you are giving it time to escape the prostate bed and therefore nullifying your chances for an actual cure.

It's a tough decision! I do think your work component makes it much tougher.

Mel

Posted 10/7/2010 8:08 PM (GMT 0)

Half of what is true today in the medical field will be proven to be incorrect in the next five years.  Unfortunately we don't know which half that is going to be. 

Les has chosen to give himself time and not rush into drastic treatments, along with the advice of his Physician that he apparently trusts.  However, as Les states, his disease is being closely watched. 

Posted 10/7/2010 8:19 PM (GMT 0)
Mel...some very good points and maybe a few myths in there as well.

For you, the Gleason 7 (4+3) is not the same as Gleason (3+4) even though the sum is the same. The EPE in your case is always going to be troubling. Did the cancer that already escaped take root somewhere else and for how long or is it still living in the nearby tissue? That remains to be seen, but if I were in your shoes, I would follow your same logic and work with the doctors as to when to begin additional therapy.

As far as danger goes...this is where some of the myth comes in. Once the cancer has escaped the confines of the protate and are free to multiply they can enter into the lymph system or the blood stream. That much is true.

However, if the remaining cancer was a result of surgical procedures (positive margin) then that makes the cancer local to the margin area...if it survives at all. Cancer cells have to have a blood supply and if there is none they will die out. Many times the scar tissue and the surrounding tissue can't support new blood vessel growth. This is why sometimes it's best to wait and see what happens. And if by chance the cancer cells do enter the blood stream, then depending on how well your immune system is, they won't survive either. In older men the immune system isn't quite as good as someone younger. Thus a greater chance of the cancer cells surviving in the blood stream for older men.

But, for the cancer to make it's way to the lymph nodes, it has to grow to get there. This is were the PSA test are of value. If the psa is rising rapidly, or if the psa amount is large then there is some risk of the cancer getting into the lymph nodes. In the pelvic area I don't how many there are, but there are quite a few. Most surgeons will remove the closest ones during surgery for testing. I think that is good news.

Most doctors agree that the typical cut point would be less than .6 and prefered before 1.0. There are some studies that have stretched that out to 2.0 and to see how the person responds to treatment at that level. But I don't think the data was very good that far out.

As far as nullifying my chance for a cure. Well...guess what...it's only 50/50 now anyway. And the results will be the same whether I start now or wait until it reaches .6. Now over .6 and well the numbers come down some. The reason the numbers come down is because of the volume of cancer. Radiation can only do so much. Most people cannot tolorate the high dosage to destroy larger tumors.

Can my doubling time become shorter...hmmmm maybe but not likely. Again prostate cancer doesn't change that rapidly...certainly not in three months time.

Excellent thoughts from all
Posted 10/7/2010 9:24 PM (GMT 0)
Les:

You said "Most doctors agree that the typical cut point would be less than .6 and prefered before 1.0. There are some studies that have stretched that out to 2.0 and to see how the person responds to treatment at that level. But I don't think the data was very good that far out."

I thought most experts are saying that 0.20 is the magic number.

That seems to be what I am reading and hearing in all of the studies.

Am I wrong?

My next PSA will be in 3 months. Let's hope we both get good news

Mel

Posted 10/7/2010 10:08 PM (GMT 0)
Mel...here is one abstract that I found...lengthy read but might fit your case

http://jco.ascopubs.org/content/24/24/3973.full

It discusses briefly the thought of moving treatment for BCR after surgery out to 2.0 and the pitfalls of doing so.

This is from Dr. Stephensen et al and basically states that a PSA of 0.2 for a person with a high gleason score or EPE is not the same as for a person that had postive margins alone. But that anyone over the 0.4 after surgery should consider additional therapy.

They feel that the BCR should be at 0.4 rather than the current thinking of 0.2 for surgery as the outcomes would be the same...if I read it right. Sometimes medical language is hard to deciper being a layman.
Posted 10/7/2010 10:54 PM (GMT 0)
Mel,
I like Les's thinking. PC is very individual and you have to match the treatment to what the pc is manifesting. His low psa doubling time and lack of positive margins are an indication that he is dealing with a non agressive local occurrance that could be in left behind prostate tissue or in the bed. It does not mean that it will progress futher than that. Most G6 cancers never progress beyond that point with reoccurrances. Les is taking the risk that G3 cells are left behind rather than agressive G4 cells.
Most doctors fail to go beyond what is dictated by the standard protocols.
In my case a PSA of 40 with a large G4+3 would indicate very high risk PC and standard protocol would have been radiation to the lymph nodes and HT for 2 years. Thank God my doctor was experienced and recommended a Combidex which eliminated lymphnode involvement and confirmed a contained tumor. This in combination with a psa doubling time of 3 years and a PCA3 of 41 indicated a non agressive PC even with though it was a G4+3.
Some G3+4s are more agressive than G4+3s. PCA3 and PSA doubling times are indicators of agressiveness. Sometimes it is good to think beyond the standard protocols and use other measurements. I think Les has a good handle on his pc and the risks he is taking.
JT
Posted 10/7/2010 11:39 PM (GMT 0)
Les,

I am one of the guys that jumped on SRT right away...   In fact actually at the level of 0.13.  My pathology after surgery was Gleason 3+3, and with two microscopic focal point margins.  My followup PSA's ran the line of 0.01, 14 mth of 0.02, 20 month of 0.03, and 31 month of 0.13 (0.11 retest at original lab), and 0.14 just before SRT.   Not much data to go on,  but uro and rad oncol both recommended SRT at this point.  

I agreed and some of the benefits stated to me were good stats for being localized in the prostate bed and the fact as catching this early,  no hormone treatment required and could use a lower dose on the SRT (32 treatments of 2 gys for 64 gys total).  The lower radiation doses would also mean less potential side effects also.  In addition,  the oncologist indicated that in his experiences,  that greater success in treatments for my numbers were to jump on it early.  Both the uro on oncologists indicated a preference for treatments before the 0.20 level.   They also both indicated that they would have no issues with me waiting an additional 3-4 months to make a decision if I wanted to...  Both indicated that they felt is was a progressing BCR and waiting greater than that time period might make down the road decisions and side effects more significant.

In addition,  I found it interesting that my medical insurance plan had no issues with starting treatment this early...   It seems to me like if there were any significant reasons to postpone treatments until higher numbers were indicated, it would have come from the medical insurance group.

Anyway,  I got zapped and finished in early March...   My first 3 month PSA was down to 0.02.    Radiation side effects were minimal.   No detriment to my original continence or ED levels.   Slight case of rectal proctitus and fatigue that have since gone away.

All in all,  I am happy with the path I took and glad of the results.    Everybody battles this beast the best way they can determine and no one way if good for everybody.   I am the type of personality that would have a hard time watching and knowing that I had PCa growing again without taking steps recommended to me by the professionals I put my trust in and the additional research I did on my own that also supported their recomendations.

I also understand some of your reasoning and support that it is your decision.  I also support keeping our minds open as new data, studies, and research comes down the line that may change our opinions of today...  

 I pray for the best for you Les...

God bless!

pasayten

Posted 10/7/2010 11:56 PM (GMT 0)

John T said...
I like Les's thinking. PC is very individual and you have to match the treatment to what the pc is manifesting. His low psa doubling time and lack of positive margins are an indication that he is dealing with a non agressive local occurrance that could be in left behind prostate tissue or in the bed.

John - Les had positive margins according to his signature. Regarding the rest of your post, you bring out a very good point of why it is so important to consider all of the facts collectively when trying to decide the next course of action.
Posted 10/8/2010 1:41 AM (GMT 0)

Even if Les goes in for SRT next month, this is a great discussion.  There is no denial here, as he freely acknowledges his re-occurence. 

I have picked up several pointers from this discussion that I am mentally filing away for future reference.

I really do enjoy this site. 

Goodlife

Posted 10/8/2010 1:52 AM (GMT 0)
lLes:

Excellent article but also quite confusing. One concern: it was written in 2006. We are now 4-5 years later and perhaps we have more information.

Also, the article states:

" PSA of at least 0.4 and rising was the BCR definition that best explained the MP, and it was also associated with a relatively high probability of PSA progression, secondary therapy, and a rapid PSADT. Thus, we propose adoption of this BCR definition as the standard for reporting outcomes of RP, as the biochemical end point for clinical trials of combined modality treatment strategies and for studies identifying prognostic biomarkers. Likewise, this definition should be used to define patient populations suitable for entry into clinical trials of systemic therapy for postprostatectomy BCR. "

Now, they are looking to come up with a standard definition of BCR and they say this is the best one in terms of correlating with deep doo doo (alial MP= metastises). But should this be the jump off point for SRT? They are not saying that. In fact, they are saying:

" More sensitive definitions, such as PSA of at least 0.2 and rising, may be more appropriate to use when selecting patients for salvage radiotherapy. "

Mel

 

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