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NCCN Guidelines Seem To Be The Unwritten Rule

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Posted 6/12/2021 8:07 PM (GMT 0)
Over the past two months I have been meeting MO’s in the Philadelphia area. So Fox Chase/Penn/Thomas Jefferson. Nice people one and all.

The thing of it is I am hearing the same exact literal thing from all of them.

1) We really dont consider doing anything more until psa is over 2.0
2) then we do intermittent hormones (lupron etc…)
3) then we move on to xtandi/chemo and all of the other newish treatments once you become castrate resistant.

One even said they dont bother with doubling time until psa is over 2.0….then they start calculating it.

There was no deviation from this. For guys who reach biochemical recurrence (i know i have to reach 0.2 for that official stamp) there is this huge void of treatment opportunity when the PCa is for lack of a better word, “little”, which I do not understand.

For example, why not 3 rounds of taxotere along with hormone therapy to try and wipe it out? Or 1/10th of a dose of LU-177? Or any number of things?

They act on a script and that script is NCCN guidelines. In some ways it was disheartening. Nobody was taking swings or had a twist on the recommended approach. It was monolithic.

Is that the way it is? Am I talking to the wrong people?
Posted 6/12/2021 8:33 PM (GMT 0)
Many institutions require their oncologists to follow the guidelines strictly. However, some oncologists in individual practice will go outside the guidelines. Snuffy Myers for example. Some oncologists at institutions are so well regarded that they can treat independent of the guidelines. This would include Oliver Sartor at Tulane University and Eugene Kwan at Mayo.

Look for other oncologists in your area and consider an assessment from either Sartor or Kwan and then get a local oncologist to do the treatment in collaboration. You are very young and high risk at dx and should receive care more tailored to your specific risk factors rather than just strict adherence to the guidelines, in my opinion.
Posted 6/12/2021 8:34 PM (GMT 0)
Stephen,
I hear what you are saying, but I'm not sure there is benefit to starting treatment sooner in people who have failed both primary and salvage treatment. It could be the other way around. For those of us who have passed into the realm of treatable but no longer curable, maybe using the remaining available treatments early on might reduce available treatments later on. I'm just speculating because I don't know. At this point though treatment is as much art as science, because there is no one true path to the best possible outcome.

When my PSA reacted 0.2 a few years after my salvage radiation I moved my treatment to a medical oncologists at Dana-Farber. His opinion was that we should just monitor until PSA reached 5 or so or until the doubling time shortened significantly. If we hadn't done that I'd have started intermittent ADT then rather than two years later and presumably could have moved up the unknown future date of ADT failure by a couple of years. Or as you propose, maybe starting sooner would have had a pushed the date of ADT failure further away. But I don't think there is evidence so far that being more aggressive earlier on is an obvious better option. If it was that would be what leading oncologists would be recommending.

Just my thoughts.
Jim
Posted 6/12/2021 8:36 PM (GMT 0)
If you wish to be adventurous, you should look into clinical trials. Perhaps there's one that fits your wish(es). Furthermore, some academic centers are more 'out there' than others; you could try MSK in NYC.
https://www.mskcc.org/

More in general, the medical world in the USA is always concerned about legal matters and deviating from guidelines can have 'unpleasant' consequences...
Posted 6/12/2021 9:20 PM (GMT 0)
I'd say they are spot on especially on the do nothing till 2.0...and frack doubling times as well that low....btw MSK is far out there as well...especially for the "far out" nervous nellies that predominate the crux of dis-ease here...Gosh it must be awful...seriously...to have to deal...with the self inflicted angst...of this dis-ease...DO NOT SPIN THIS...to a point that obviates what you actually might know about the obvious stage4 patients....90%+ of medical TX is script and protocol and it suffices for most...of course the outliers who are on both ends of the spectrum are always the exception and benefit or do not benefit from those "endpoints" in ways modern medicine are unaware...thanks for the ear...BTW it is said that doctors practice medicine...there is a reason for the word...practice....toodles...
Posted 6/13/2021 12:06 AM (GMT 0)
Following the “state of the practice” is common in all the professions. Accounting, engineering, medicine, etc. all have problems with “negligence” or “malpractice” legal suits where the accusation is that the professional did not follow or perform to the standards of those practicing a similar function. Making an error or mistake is one thing, being negligent is much more costly and to be avoided by larger groups who have more to lose (deep pockets).

However, I have trouble understanding how oncologists could have this problem to any great degree. People get cancer and many will die from it. What could one do that would materially change the outcome when most treatments just extend life a year or two (PCa is generally an exception). I suppose one could give a patient bleach and he/she dies thus getting sued for big $’s but trying to save or extend life is generally considered a good thing unless you really mess up big time.

My guess is there is nothing in it for insurance companies, hospitals, and doctors to take undue risk as a matter of general practice. Universities have a little more leeway since they can hang research onto a lot things and get people to sign on to it. Based on everything I have had to sign before I had surgery or treatment, I can’t believe I would have any rights to sue anyone regardless of what happened but jury trials can upset that cart easily.

Just Saturday evening thoughts before an evening beer.
Posted 6/14/2021 1:59 PM (GMT 0)

Hello Stephen S. ~~~

I have had many of these thoughts, when fellows here are caught in "THE TWILIGHT ZONE" --- watching one's PSA climbing ---- yet being told one has to wait for PSA to reach certain benchmarks before any action can be taken.

I agree with you ---- would be great to see proactive "mini-treatments" that could be offered patients ---- to knock down renegade cancer cells at the micrometastatic level --- before they proliferate.

I envision something like two quick rounds of chemotherapy --- a month or two of something like ZYTIGA or XTANDI --- or perhaps short-course treatments that aren't even "on the shelf" yet.

Each case is different. I visit Dr. Eugene KWON at Mayo Clinic a couple times each year. He was mentioned in comrade JNF's post above.

Dr. Kwon is visionary in his approach. He is one who "thinks outside the box" --- feeling that using the "same old things" will result in the "same old results" for patients with complexities. He treats patients from all over the globe. I just saw him last week.

A few years ago, my local oncologist was carefully watching my PSA slowly climbing. Dr. Kwon ordered some specific scans and pinpointed a "trouble spot" and worked with a Mayo radiologist to "map out" a treatment plan for me, that was followed to the letter by my local medical team.

I give thanks, each day, for his visionary approach that helped me then, and continues to help me presently.

A key difference was that Dr. Kwon wanted to "pull the trigger" SOONER, rather than later --- which speaks to the point of your original post.

I visit my local oncologist each month. He is a GODSEND to me, and watches over my case with care and compassion.

In addition, Dr. Kwon provides important input, throughout the year --- my trusted "second set of eyes" --- lending his valued experience & insight.

Important to state --- my doctors communicate & consult with each other on all matters. Coordinated care, in every sense of the word! I am grateful, every day, for that.

Since my diagnosis in 2013, I have "benched" two doctors who liked their own roadblocks, and I told both of them that I believed in BUILDING BRIDGES, instead.

I have worked hard to assemble a medical team who embraces the concept of true TEAMWORK.

What you wrote at the beginning of this thread --- I understood every word.

Each story is different, each case is unique --- but the thoughts you expressed in your post resonated with me, Stephen S.

Reflections, thoughts, personal experiences,
CYCLONE ~~~ # Iowa State University
Posted 6/16/2021 2:21 PM (GMT 0)
This approach is frustrating. It is so boiler-plate, and doesn't recognize variations in patient's cases or preferences. I think it is based on insurance company cost-control guidelines, and on minimizing liability risk (also a cost issue).

Which is cheaper - treat a great many early on, or a few later? Treat per guidelines, patient dies, oh well. Treat outside guidelines, patient dies, LAWSUIT. For some darker cynicism, which is cheaper - treatment, or just let the patient expire? I don't recommend dwelling on that question, and one would hope that a doctor's ethics wouldn't let them be that callous. The cost pressures are pretty obvious though.

In my case, I had a pretty advanced case at diagnosis, but only a 5.2 PSA at dx. The Type 5 cells don't make much PSA, so it's not unusual for high Gleason scores to not have a high PSA. So... what does that mean when assessing recurrence? Still need to wait for 2.0? That may not be reasonable.

There are so few G9/10 cases the guidelines pretty much ignore anything specifically related to that. They just lump them in with "high risk" (G>7 or PSA>20), and that's about it.
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