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Posted 9/7/2013 10:29 AM (GMT 0)
I thought I'd start another thread as I'd like to solicit additional feedback to help with decision making; both my own and perhaps others as well. They say a little knowledge is a dangerous thing, but what happens when these little bits of knowledge together paint a picture with potential negative implications.

On the surface, my numbers from my biopsy results of 3 days ago as depicted in my signature below should reasonably imply low-grade, slow growing PCa. My initial thought upon diagnosis was active surveillance. If I left the discusssion to those numbers alone, I would suspect that a great many of you would agree on AS. I am getting a second opinion on the biopsy from Bostwick! Maybe I'll get really lucky! I'm also being scheduled for a CT and a bone scan to be done if the second opinion confirms the biopsy results or shows something worse.

However, I read a lot. I enjoy research but again, a little knowledge is a dangerous thing. The point is that I seem to have what I call "Wildcards" that I also seem to have been dealt that seem to suggest to me that a more aggressive approach to my PCa, sooner than later, such as RRP might be prudent.

WildCard #1: My father died at age 66 in 1978 of PCa. He first presented with a total inability to urinate and lasted less than a year. He had prior symptoms but ignored them. Now the literature does say I was more likely than some to have gotten PCa based upon the fact that my father had it. But I've seen nothing in the literature that describes the potential for increased risk of aggressive PCa for me because my father died of aggressive PCa that metastasized to the bones and was a miserable way to go.

WildCard #2: My low (under 2.0) PSA for the past 11 years with a current reading of 1.6. I think I'd rather have had something above 4.0 but I don't and that may imply the possibiity of small cell aggressive prostate cancer that does not "produce" PSA. How do you do AS if you can't rely on PSA as a marker of increased activity? In addition as suggested by my urologist, how can I do anything other than RP such as any radiation approach if I can't rely on PSA to tell me that more needs to be done.

WildCard #3: Relatively small prostate volume at 32 grams. I read a study that concluded the following:
"Men with smaller prostates had more high-grade cancers and more advanced disease and
were at greater risk of progression after RP. These results suggest that prostate size may be
an important prognostic variable that should be evaluated for use pre- and postoperatively to
predict biochemical progression."

WildCard #4: Extremely high Free Testosterone level. The literature shows research that high levels of free T increases the risk of having PCa. My level is 2-3 times the highest numbers mentioned in any of the free T and prostate cancer risk studies. The studies only correlated free T as that seems to be more an indicator of what's available for the prostate than total T. But for your information, my total T is 1238, which is off the standard reference range charts. So with all this testosterone could I have an increased risk of helping "feed" my PCa growth? That's why I see this as a Wildcard.

With these four wildcards, any one of which might imply increased chances of aggressive PCa, I'd like to solicit feedback as well as have people realize that there are many known and unknown variables and behind "statistics" are individuals trying to make the best of the hand they've been dealt.
Posted 9/7/2013 11:41 AM (GMT 0)
Interesting research you've done. Good for you! I would set up an appointment with a medical oncologist who specializes in PCa and ask these very questions. I think this stuff is beyond a regular urologist. AS is always an option, and maybe a good one if you can get reasonable answers to your questions. Knowing what you do from your research, and without a chance to verify your findings and interpretations of the data with a medical oncologist, that knowledge might make AS unbearable for you as you'll always "wonder". I'd set up that appointment I suggested. You have time to figure this out, and I think you're going about it the right way.
Good Luck,
Mike
Posted 9/7/2013 1:23 PM (GMT 0)
Hello.
I don't think your prostate is tremendously small. Think mine was about 26.
Have read that low testosterone at diagnosis is a bad stat for risk of aggressive prostate cancer.

Personally believe that a plant based diet is important for AS. If you feel you could modify your diet in that direction, you would be a better candidate for AS in my opinion.
Good luck on your decision and health.
Posted 9/7/2013 2:23 PM (GMT 0)
Sounds like you may have already researched small cell

http://emedicine.medscape.com/article/1611899-overview

Video:

http://www.youtube.com/watch?v=4D29d8C3g6c

My personal opinion is you are stringing together unrelated facts and trying to prove your hypothesis that your PCA is worse that the metrics say, but I am not a medical professional.

For example just because you have a "small prostate", (actually only slightly larger than normal) that does not mean you are likely to have aggressive PCa, or else the majority rather than <10% of those diagnosed would have aggressive PCa.

In general a low PSA is good. In my case it was not. My PSA was only 3.68 at diagnosis and bone mets then rather than as recurrence. But this happens less than 1% of the time and not to Gleason 6's.

True your dad's PCa history makes you more susceptible. Your dad's history is cause to have the biopsy but once you have a diagnosis it stands on its own merits. Any treatment decisions that need a tie breaker, error on side on your dad's PSA history.

My notes from the free PSA%
PSA Free%<10 suggest prostate cancer 8 times more likely
PSA Free 10-25% suggests BPH is 3 times more common than prostate cancer
PSA Free% > 25 rarely associated with cancer

However, if I recall, there is a PSA threshold that has to be met before free PSA% is meaningful, and it is a lot higher than yours or mine.

Percentages of a very low PSA are not meaningful.

Form a team of 2 urolgists/surgeons (second opinion always a good idea), one radiation oncologist and one medical oncologist not all from the same practice with as many as possible given logistics from a nation PCa center.

The medical oncologist should be the QB as in theory not as biased as the surgeon who solves all problems with a cut or the radiation oncologist who solves with a zap.

I hope your metrics tell the story, but to be safe have a medical team review your "wild card" assumptions.

Good luck.

LupronJim
Posted 9/7/2013 5:22 PM (GMT 0)
Clanda -  your posts resonate with me because my dad also died from prostate cancer and my psa is about the same as your's.  I watch it very carefully but have never had a biopsy.  (I first tested at age 40 and it was 1.4; went up as high as 1.7, then back to 1.5 where it has remained).   I have reacted to my concern about prostate cancer by reading hundreds of articles and studies and consulting with some well-regarded doctors about prostate cancer prevention.  (Overkill?  Maybe.  But we all have our own ways of dealing with fear).

My sense from your posts is same as LupronJim, when he said:  "My personal opinion is you are stringing together unrelated facts and trying to prove your hypothesis that your PCA is worse that the metrics say, but I am not a medical professional."   First, 32 grams is not a particularly small prostate.  It is in the typical range.  Second, while there are some prostate cancers that are aggressive and produce little psa, it seems more likely that you simply caught a low-grade prostate cancer early -- and were fortunate in that regard -- though I am sure you are not feeling very "fortunate" right about now.  A Gleason 6, two of 12 cores positive, 5 and 10%, does not sound like the typical "high grade, low psa" situation.  Of course, it is not impossible, biopsies are a bit of a shot in the dark, etc., but don't immediately jump to the worst conclusion.  (As they teach med students, when you hear hoofbeats, think horses, not zebras).

If you are interested in exploring AS, you might want to talk with one of the doctors at major academic medical centers who have done a lot of work on AS and supervise well-considered AS programs.  They could give you advice about whether you are a good candidate for AS and how to deal with the "psa question" your surgeon raised.   Two docs who are well known in the AS area are Laurence Klotz in Toronto and H. Ballentine Carter in Baltimore.  But there are certainly others, and maybe one more convenient to where you live.

It is probably worthwhile for you to meet with a radiation oncologist too, to explore the seeds (or external beam radiation) option.  Your surgeon has given you some arguments in favor of surgery.  But maybe you want to hear a different perspective too, before you make a decision.   Downside is it will take an hour or two of your time and cost you a few dollars depending on your insurance.  Upside is you will get smarter about something  important, and perhaps feel more confident about whatever decision you ultimately make.

By the way, I am not discouraging surgery.  First, I am not at all anti-surgery. Second, it would be ridiculously presumptuous of me to tell you what treatment you should have.  But I do think it would be worth hearing some different perspectives before you make a definitive decision.  And if you do decide on surgery, have someone really talented and very experienced do the surgery.  It is not the simplest surgery in the world, and there is some evidence that very experienced high volume surgeons tend to get better results.

Best wishes, Medved

Posted 9/7/2013 5:30 PM (GMT 0)
I can certainly see how your father's PCa puts your own in high relief. However, odds are good that you really have an insignificant amount of indolent cancer. A good friend of mine with numbers very similar to yours (very low PSA, small cancer volume, GS6) finally decided after 3 years on AS to have HDR brachy. He used Dr. Ukimura at USC to monitor his PCa using Color Doppler Ultrasound, and used that to target his biopsies. The mpMRI/US fusion biopsies also seem to work well and may be able to detect more aggressive cancers. All AS programs include a confirmatory biopsy after a year. You may decide that for your peace of mind that you will want that to be a targeted biopsy using one of these advanced imaging techniques.


1- Heredity is a factor in incidence, but only one of many. You may be interested in playing with a nomogram to see how much or little your odds of PCa change. Here's one popular risk calculator based on the database of the Prostate Cancer Prevention Trial (PCPT):

deb.uthscsa.edu/URORiskCalc/Pages/calcs.jsp

They use the formulae:

PCA = -1.7968 + 0.8488 X log(PSA) + 0.2693 X FAMHIST + 0.9054 X DRE - 0.4483 X PRIORBIOP

Prostate Cancer Risk = 1 / [1 + exp(-PCA)]

HG = -6.2461 + 1.2927 X log(PSA) + 0.0306 X AGE + 1.0008 X DRE + 0.9604 X AA - 0.3634 X PRIORBIOP

High-Grade Risk = 1 / [1 + exp(-HG)]

where:
PSA=PSA in ng/mL
FAMHIST=1 if father, brother or son ever had prostate cancer; 0 otherwise DRE=1 if digital rectal exam positive, suspicious for prostate cancer; 0 otherwise PRIORBIOP=1 if ever a prior prostate biopsy was performed; 0 otherwise AGE=age in years AA=1 if African American; 0 otherwise

As you can see, they did not find family history to be a significant predictor of high grade risk when those other variables were factored in. It only correlated with incidence.

Here's a popular calculator in which you can incorporate your biopsy results:

nomograms.mskcc.org/Prostate/PreTreatment.aspx

2. You are talking about a fortunately rare kind of prostate cancer. Research can only tell you group probabilities and doesn't predict for the individual case. If small cell PC is identified on a subsequent biopsy, you would deal with it then and further AS would not be an option. Worrying about such remote probability events in advance serves no purpose, imho.

3. Your prostate size is certainly in the normal range. The variable related to size that may be more predictive is "PSA density." PSA density = PSA/ prostate volume = .15 average. So smaller prostates that pump out a lot of PSA are more suspicious for PCa. In the PCPT Risk Calculator cited above, you can click on the list at the right where it says "Prostate Volume and Number of Cores" to incorporate that effect.

4. Most of the research on the effect of testosterone - both free and total - is in the other direction. High levels are generally found to have no effect. (In fact, Dr. Liebowitz is actually treating his patients with high doses.) You can search this forum for discussions of much of the available research on this interesting topic. It seems that at least normal levels of T are necessary to keep healthy prostate cells healthy. I would be more worried if I had chronically low levels of testosterone, which is strongly associated higher incidence and higher grade PCa.

- Allen
Posted 9/7/2013 7:28 PM (GMT 0)
You have to treat what you have, not what you think you may have. The only issue of concern is your low psa in relation to tumor volume. This discrepancy can be sorted out by either Bostwick or Dr Bronkhoff using some advanced testing on your biopsy slides. This would be a good idea even if you have to pay out of your own pocket. In absence of these advanced test you would only be guessing and with the stakes involved guessing is not a sound strategy.
You have to treat the biology of the disease presented and until proven otherwise you have low risk PC. Weather or not you have a variant of a high risk disease can be easily determined by tests available from top notch pathologists which should remove any of your doubts.
Posted 9/7/2013 7:54 PM (GMT 0)
I was also cT2a with 2/12 cores positive GS 3+3=6 and had even more tumor than you (10% and 20%) but my PSA was even lower at only 1.23. My prostate was even smaller -- only 20cc. I also had PNI, so I was quite concerned but ultimately I did turn out to be organ-confined GS6.

Surgery went pretty well for me but is nothing to do lightly! At your age I would not not rush into it. I'd consider a diffusion-weighted MRI (which can help assess both extent and aggressiveness) and a color doppler US or MRI-guided biopsy.
Posted 9/7/2013 8:14 PM (GMT 0)
It's ironic. I've been waiting for 35 years since my father died of prostate cancer to eventually be faced with a diagnosis of the same disease. Years ago, I told myself that "the seeds" would be the way that I woud handle the situation. Later on the buzz words were "watchful waiting" and that was what I would do if I had "it".

Last month when my internist felt the "nodule" and my urologist confirmed that he felt a "hard area" upon doing each of their DREs of me, I suspected that I would soon have to really deal with the subject of this 35 year old issue. My biopsy diagnosis 3 days ago confirmed it.

What I have discovered in three days is that my decision making is somewhat of "a moving target". What seemed to make perfect sense on a theoretical basis before the diagnosis, doesn't seem to necessarily make as much sense after the diagnosis. Beyond all my numbers, all the statistics and all the choices available moving forward, I am coming to a realization that my own psychological makeup, ie what's really most comfortable to me psychologically, may trump all.

The thought of RP was always the farthest from my mind over the past 35 years. No one could have ever convinced me that RP would be the way to go at this for me. I would stay on top of the latest thinking and move forward accordingly or so I believed. Upon diagnosis and with my current numbers I thought for sure that AS was the right approach. What a difference just a few days make and perhaps a few more or a few weeks will make even more difference.

Today I feel comfortable (psychologically) with the idea of RRP performed by Dr Vipul Patel in Orlando.
FL. Weighing everything and evalutating the known possibilities (while still trying to avoid the unknowns), I actually feel comfortable enough that I could better "live with myself" going this route, even if the results are not the "triple perfecta".

To be continued...
Posted 9/7/2013 8:30 PM (GMT 0)
Chances are you have quite different disease than your father had.

Surgery may be a good option if you are in excellent health with 20+ year life expectancy, but you should take your time and consider multiple treatment options and also multiple practitioners for each. Patel is good and very well known, but there are other surgeons out there with substantially better track records (lower positive surgical margin rates), IMO.
Posted 9/7/2013 9:09 PM (GMT 0)
njs - you raise an interesting point about positive surgical margin rates.  It is really hard for a patient to compare surgeons.  First, you need to consider case mix.  But beyond that, perfect (and verifiable) information seems hard to obtain.  What answer would you have received, at Hopkins, if you had asked for the positive surgical margin rates of each of the surgeons there, so you could choose "the best" among them?   And what if you had then asked to see some evidence to substantiate what you were being told?   I am not disagreeing with you that a patient who has decided to have surgery should find the best surgeon he can -- the one with the best technique and the best results.  But it seems to me really hard to do. 
Posted 9/7/2013 9:45 PM (GMT 0)
medved,

You are correct that it is hard to obtain surgeons' outcome statistics without actually going in for a consult and asking -- with the exception of those who have published their results.

There are a few out there who have published excellent results and fortunately a patient only needs to find one.

I had found excellent published PSM rates (1.8% for pT2 and 26% for pT3+) out of Hopkins but these were institutional not individual so I absolutely asked each of the two surgeons I consulted with there (one robotic and one open) if their own personal rates were that good and they each said that they were.

As far as asking a surgeon to substantiate them, I guess that is where trust has to come into play...
Posted 9/7/2013 9:46 PM (GMT 0)
njs:

I too was intrigued by your reference to positive surgical margin rates and found your incredible post
https://www.healingwell.com/community/default.aspx?f=35&m=2761907 which described in depth your journey as well as positive surgical margin rates for a host of top surgeons nationwide. Very impressive work!

In my case my biopsy showed 2 postive cores: Right Lateral Base 5% and Right Apex 10%. My Uro explained that Dr Patel using RALP (I incorrectly stated RRP) could then spare the nerve on the left and not be concerned with nerve sparing on the right. So while Patel's positive surgical margin rates for pT2 are higher than one would prefer, it might not be as important in my case.

If someone wanted to comment on that assumption, please go at it. That is something I'll need to check out. If it is not correct, njs provided some very other alternative practitioners with lower positive margin rates.
Posted 9/7/2013 11:34 PM (GMT 0)
Congrats, you now seem to be dealing with the diagnosis you have rather than with fear of what it could theoretically be.

I would still caution that you take time to make sure your evolving opinions do not change once again, possibly back to seeds. As a Gleason 6, plus low %'s, time is on your side. Plus, just about any option you choose will work.

Assuming with insurance or you personally can afford it, I still recommend a team of two urologists/surgeons, one radiation oncologist and one medical oncologist from different practices to avoid self referrals. Also as many from national PCa centers as possible given your logistics.

This may be overkill for a low % Gleason 6 but given where your head is at, may be worth it. The team approach usually applies even more to advanced PCa.

The medical oncologist would tend to be the least biased from the hammer syndrome of a hammer seeing all problems as if they are a nail waiting to be hammered, either by the surgeon's cut or the radiation oncologist's zap. The MO has no vested interest but might increase your chance of ending up on hormonal therapy to buy more time.

I sincerely doubt that the whole team will be as far out there as your primary Urologist seems to be (per other thread).

Good luck.

LupronJim
Posted 9/8/2013 12:25 AM (GMT 0)
Clanda,

Since you only got your biopsy results 3 days ago, may I suggest you take a breather? Clearly there is no rush to make a decision now. Like you, right after my diagnosis, I found my decision-making process was in constant flux. My parents both died of different cancers, and I could not put that or their suffering aside. Then I got into counseling and figured out the problem was in my head.

The best thing I learned was a practice called Mindfulness. It very quickly reduced my anxiety level. What I had been doing was living in projected future scenarios and becoming overwhelmed by feelings of anticipated regret. It's the anticipation and the fictional futures that were impairing my ability to make rational decisions based on a thorough analysis of my own values and an objective analysis of facts. It took me maybe 4 months to get my head on straight -- after that, my decision-making was surprisingly easy.

I can only imagine how the bad news has affected you after rehearsing scenarios for 35 years. I hope you find a way to sort it all through.
Posted 9/8/2013 12:41 AM (GMT 0)
Just my opinion but if a biopsy was done and showed Pca,(Comment deleted by Mod - Violation of Rule#3) What will you do in a year if it has spread?

Post Edited By Moderator (Tudpock18) : 9/8/2013 5:21:44 AM (GMT-6)

Posted 9/8/2013 12:45 AM (GMT 0)
(Sorry - Quote from previous post deleted since I deleted the original comment)

Seriously?

Post Edited By Moderator (Tudpock18) : 9/8/2013 5:24:10 AM (GMT-6)

Posted 9/8/2013 12:45 AM (GMT 0)
I had 6 positive cores out of 52.  (3+3)  PSA 2.76  No core more than 5%.

I waited 6 months from time of diagnosis to treatment.  Surgeon told me there was no rush.

I agree that you are reaching way out and stringing remote possibilities together.  You are a low risk patient who is very eligible for AS.  I would strongly consider it if I were you.......

The fact is guys who were diagnosed with what you have only have a 1%-2% mortality rate up to 20 years later using AS.  And those guys were diagnosed with G6 before the 2005 ISUP changes.  So, who knows many of the 1%-2% might not have been G6 today and never would have been on AS. 

There is about a 30% chance you will be upgraded to a higher Gleason score after surgery.  So that means that 30% of the guys in the AS study were a higher score and still on 1%-2% died up to 20 years later doing nothing.

How's that to further muddy the water for ya? 

I know it's hard when your are told you have cancer to do nothing, but the longer you don't treat the better your quality of life will be....I wish I had the guts to have waited...

I agree with Steven D.  Seriously, Zampilot?!  

Post Edited (ChrisR) : 9/7/2013 6:56:17 PM (GMT-6)

Posted 9/8/2013 1:21 AM (GMT 0)

clanda said...
In my case my biopsy showed 2 postive cores: Right Lateral Base 5% and Right Apex 10%. My Uro explained that Dr Patel using RALP (I incorrectly stated RRP) could then spare the nerve on the left and not be concerned with nerve sparing on the right. So while Patel's positive surgical margin rates for pT2 are higher than one would prefer, it might not be as important in my case.

I may be missing something clanda, but I don't see what is so unique about your case or Patel's approach. Most all surgeons (including both open and robotic) will make on-the-fly nerve sparing decisions independently on the right and left based on what they find while they are operating. So a guy could end up with bilateral sparing, unilateral sparing or neither. There are also degrees of partial sparing that can be done on each side. Just because you had tumor on the right, does not mean you won't be able to have sparing on that side. In my case I had partial sparing on the right (where the tumor was) and maximum sparing on the left. An MRI could be useful to help stage and pre-plan what degrees of sparing would be safe. These may be of interest:

www.moffittcancercenter.com/CCJRoot/v17n4/pdf/233.pdf
onlinelibrary.wiley.com/doi/10.1111/j.1464-410X.2011.10565.x/pdf

Also, if you have not done so, I would strongly recommend reading Patrick Walsh's Guide to Surviving Prostate Cancer.
Posted 9/8/2013 1:42 AM (GMT 0)
njs,

I did read Walsh's book just before having the biopsy.

It is I who is probably missing something or confused about something. My mentioning Dr Patel, nerve sparing on the left and the positive surgical margin issue is that I am "assuming" that if one only has cancer on one side of the prostate, the chances of the surgeon leaving positive surgical margins is much less because you only need "one nerve" ( the one on the clear side) and he can cut as much as he wants on the side with the cancer with less concern for that nerve.

So I was not claiming that anything was unique in my case. I just thought that with cancer on only one side, there should be less reason to have a positive surgical margin(s). Am I thinking of it in the wrong way?
Posted 9/8/2013 2:28 AM (GMT 0)
Cianda,
I am not going to try to talk you out of or into treatment. Each man has to decide what is best for him. I just wanted to say hi and that we both live in Boynton Beach, FL and Dr. Vipul Patel was my surgeon last year.
Email me if you would like to talk or meet. You can get my email by clicking on my name Big Mac.

Bill from Florida cool
Posted 9/8/2013 2:36 AM (GMT 0)
Don't be so hard on yourself clanda. You have and are clearly making an great effort to inform yourself, which is commendable.

Positive surgical margins do not only occur due to attempted nerve sparing. The potential exists everywhere the surgeon has to dissect the prostate away from other vital structures including the rectum from the posterior prostate and the lower sphincter at the apex. If he cuts into the prostate and there happens to be tumor cells in that part of the prostate you end up with a PSM.

In fact, the most common location for PSMs is at the apex, which is very tricky since there is little distinction between prostate tissue and striated sphincter muscle. Because you have tumor at the apex (as I did) this should be a concern and I think you will want to find someone with a proven track record of very low PSM rates if you opt for surgery.

As far as nerve sparing, unless there is strong suspicion of extracapsular extension, which there would not seem to be in your case (but, again, an MRI could add another data point), just about any surgeon is going to recommend attempting some degree of nerve sparing on the right side as well as the left. You can get by with one nerve but your chances of recovering potency (especially in the shorter term) are much better with both spared.
Posted 9/8/2013 3:03 AM (GMT 0)
clanda, njs, great discussion. This is what this forum can do. Good stuff.
Posted 9/8/2013 5:03 AM (GMT 0)
zampilot, you said:

(Sorry - quote from other post deleted since I deleted the original comment)

Why would you say this? What are you basing it on? Do you feel that AS is never appropriate? The whole point of AS, is to avoid any invasive treatments for as long as possible. If there is signs of the cancer progressing in 1 year, or 5 years, or 10 years, you can still be treated. And according to many experts, your chances of your primary treatment choice at that point is still equally effective.

david in sc

Post Edited By Moderator (Tudpock18) : 9/8/2013 5:25:18 AM (GMT-6)

Posted 9/8/2013 5:11 AM (GMT 0)
clanda,

you have been given huge amounts of good advice.

just because your father had aggressive pc (sorry for his death), you said he had prior symptoms, but chose to ignore them. his aggressive cancer in no means would indicate that you would have the same, it just increased the odds that you did indeed have pc as well.

getting the 2nd opinion on the slide is important, and if it comes back matching the first, then that should give you plenty of confidence that you are dealing with a low level and possibly indolent cancer, which with your stats, would make you a good candidate for AS, or for treatment if that is what you really want

I also suggest turning over the results with the 2nd opinion to a good medical oncologist with good experience with PC. one that does not have a dog in the fight, such as any urological surgeon or radiation oncologist, some neutral to any particular treatment choice.

And then take it from there, as others have suggested, there is no need for any urgent treatment decision in my opinion.

I had both failed surgery and failed salvage radiation, if you choose surgery, regardless of how great he surgeon is, you will be putting the specter of both incontinence and/or ED on table, and you have to ask yourself, how far are you willing to go to chance having long term problems with either issue. our ranks are full of surgery guys still dealing with both issues in a serious way.

I think you are going about this the right way, and respect any ultimate treatment or non-treatment that you ultimately choose, one reason why we are here - to support you.

david in sc
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