CSN Login
Members Online: 5

You are here

initial resistance

xNTP
Posts: 34
Joined: Oct 2016

Resistance is profitable (for them).   Previous - posts.   Originally titled, "resistance to cheaper, better, faster - next generation stuff"

Ok.  So I've read a fair number of papers and articles.  I have two general research interests: better diagnostics and better therapeutics, as will most likely pertain to me in a full life cycle sense.  This includes  serial biomarkers, preferably obtained least invasively. 

Went to the urologist wanting to get an initial DRE, 4Kscore, PHI/p2psa, and PCA3, maybe a metformin prescription.  Talked at length, got the careful DRE, "enlarged maybe 30-35 cc, no palpable irregularities, a little firmness on the outer edges".  Talking about goals, mostly about biomarker series PCa and other cancers, I let slip that I was hoping/planning to get a 3T MRI (mp-MRI), implicitly elsewhere, maybe a big mistake   They do the PCA3, the most expensive liquids test of the three, done with no problem at all.    The urologist doesn't press a biopsy, it's just hanging in the air.  

Dr won't offer any advice or scrip support on metformin, claims never has written a metformin script.  hmmmm

Instead of a nurse for a blood draw, they have a 3rd party tech (LabCorp).  LabCorp tech is "willing" to draw a 4Kscore ($395 lab analysis only for an outside lab) with the dr's script and give it to the dr's medical assistants for packing and shipment.  Total breakdown occurs over the PHI/p2psa ($130 lab analysis only).  2 hours waiting and back and forth with flunkies. Made it easy for them to get started but dr will not do PHI/p2psa, period. I feel like I have stepped into larger turf issues.  I'm pretty outraged and it's too late for FedEx pickup on the 4Kscore.

Afterwards, I go through the Physician's 2016 v.2 NCCN and a 2013 AUA guide for early detection of PCa.  I feel like NCCN reasonably supports my order of battle if available (both physically and prepaid $) as "best available technology".  The 2013 AUA document seems negative and overcautious, perhaps tacitly hostile, to biomarkers, "proooove it to me".    

I'm still bogged down on the PHI blood test.   I've learned the hardway the extra costs (time, $, risk) of an incomplete initial dataset on cancer questions.  This is too important to leave to cut n' paste, one-size-fits-all, 20th century, 1-minute medicine.  Especially with cancer questions. 

Otherwise, I'm on track for the original plan's time table (place B), minus some $. Too much time for a small amount of professional support and lab work.  After this broken step gets done, the urologist is dead to me, I'm done there. If I could have found a PA or nurse practitioner that was ready to go on the outside labs, with a combined draw for both biomarker sets (4Kscore and PHI/p2psa), I'd be far happier. And less poor.  

I think part of our national BPH/PCa problem is that primary care providers should screen with a cheap 3rd generation PSA test, a 3-4 panel test of kallikreins (the PSA family), for better specificity and costs.  This would be before AUA can exercise their gatekeepers to maintain a risky, overpriced turf or walled garden.   Extra panels are incredibly cheap in the operation and "manufacture" sense, at PSA replacement volumes, especially for hardware that labs often already have.

Updates

[11/10] 4Kscore done with clumsy support from the urologist's office, clearly a lack of familiarity and support there. Basically I frog marched them through some necessities (which specific test, reporting options). Still have trouble with getting the Prostate Health Index drawn after an interview with a hospital's nurse navigator and a clinic.  Incompetence and over-regulation, guarded by conflicts of interest.   Getting these simple things done feels like Groundhog Day.  

[11/19]  Switched to Place B.  Call the original urologist above at A, he reports PCA3 as 20% (<25% is "normal") and 4Kscore is 32% "high", a somewhat split result.  The blood draw for my 4Kscore was not really in strict specification constraints. My blood draw was 2 days post DRE instead of before DRE (my original aimpoint) or 4 days post DRE. I am left wondering whether the DRE was a sufficient massage (didn't feel much) for PCA3's design.  When I outline my plan for mp-MRI and targeted, fusion biopsy, he says "I agree with your thinking"

Saw a surgeon we know well at B and got a referral for a new urologist.  

[11/21]  Turns out the new urologist is in our insurance network at B, got insurance approval no questions asked.  Spent the morning scoping out the hospital's situation.  It's an elderly 3T MRI, ~9 yo, awaiting upgrade in another year.   The color doppler ultrasounds are in another office (2 doors away) and are not standard for the basic 12 core biopsy.  MRI ultrasound fusion biopsies are a year away.    Meet urologist, it's short and hurried.  He's a little suprised that I have a 4Kscore and PCA3, he's agreeable to arranging a PHI if possible.  He's helpful on paperwork for a full on mp-MRI with insurance coverage, after labeling me biopsy avoidant.  I didn't say absolutely no biopsy, I said absolutely the minimum coring necessary for a 20 year plan...  All in all, a good start.  Much better attitude than A.  Hope springs eternal.

 

xNTP
Posts: 34
Joined: Oct 2016

Arrived B.  updates above.

Old Salt
Posts: 720
Joined: Aug 2014

Cue "My Way" (Frank Sinatra)

And now, the end is near
And so I face the final curtain
My friend, I'll say it clear
I'll state my case, of which I'm certain
I've lived a life that's full
I traveled each and every highway
And more, much more than this, I did it my way

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3228
Joined: May 2012

Old Salt,

Another tune from the 60s about getting to the "Place" you're headed to.  Not a classic like My Way, but fun. One in ten guys might remember this from the old TV show. 

May xNTP make it to Place C or D or wherever he's looking for,

max

https://www.youtube.com/watch?v=PYKQ3fwNb0c

max

xNTP
Posts: 34
Joined: Oct 2016

That's cute and thanks for your concerns.  I do believe that a sober read of the last two years' papers, from 2H 2014 to present, supports my line of action as far as maximizing net outcomes.   See also NCCN v.2 2016, it's not a perfect world, but introducing mp-MRI at this point appears to improve various odds and favorable outcomes.  My greatest risks so far have been with the doctors' offices themselves - their skill levels on new techology or even their lack of simple cooperation and participation slowing me down (A).

Truth to tell, looking at the numbers, PCa is still #2 or #3 on my list of buckets, I've got other exposures to work on.  Short of being metastatic PCa right now, I am adequately productive, although I would have appreciated more medical support at A in a more timely manner.   

hopeful and opt...
Posts: 2218
Joined: Apr 2009

"  the minimum coring necessary for a 20 year plan"

What do you mean by this statement?

xNTP
Posts: 34
Joined: Oct 2016

If I were so lucky as to maintain things at Active Surveilence for 20+ yrs and expire later from something else, I am not interested in 5-10-20 biopsies with TRUS 12 core samplng to get there.  The first urologist mentioned examples of 6 and 20 biopsies in less time when I asked about his experience with outliers.

Assuming I have an indolent PCa or perhaps a questionable BPH, my base reference plan of "Active Surveilence & chemistry" for discussion and modification is:

1. a frequent blood test (or an unprovoked urine test - not PCA3), like PSA+fPSA+p2psa (I am not fond of babyfied constructs like single scaled scores as the primary report, I want assay values) and several other panels

2. mp-MRI every 1-2 yrs or as indicated by data and events

3. targeted, fusion US guided biopsy as needed

4. work with proposals for modified biochemistry (diet, metformin, targetable substances) 

hopeful and opt...
Posts: 2218
Joined: Apr 2009

I was diagnosed in March 09, and have and continue to be in an Active Surveillance program. I documented all treatments that i have had which you can read if you click my name on the left. Additionally, I noted various diagnostic tests and a discussion by a formost doctor who has specialized in treating men in an Active Surveillance protocol.

I need to mention this to you which I hope that you will not just read, but internalize so you can get optimum treatment for your prostate....When I was diagnosed I attended local prostate forums. I met a man who I am still in contact with who was very knowledgable( in fact he has a doctorate in some kind of medical science), and had been diagnosed years before I was. In fact he mentored me for a while.  Basically he was self treating himself, getting very frrequent PSA, free psa, watching the trends. (He only had the one biopsy, where he obtained the slides and  read or reviewed the slides ( instead of sending to a pathogist)). This had been going on for years. Lately the PSA showed a rising trend.....so he recently had a T3 MRI, then he had a random biopsy....he told me that one of his cores is now a 9 (which is very aggressive).

This man, that I am discussing for your edification, is extremely knowledgeable about PCa..........and because he self treated, he is in trouble now.  Although you may think so, you are a novice and are not extremely knowledgeable. You are not qualified to determine what needs to be done in your case, and as Vasco posted to you, you are messing around with superficial tests, which have some value...but this not what needs to be done in your case.

To be honest, when I read your posts, to me it shows that you want to control what happens...that you are not focused on what needs to be done...that is have a biopsy......(if you read the history of my treatments, you will see that I have had most all of the  tests that you mentioned, if fact I have had 5 fusion mri/biopsies). My doctor works for me, but I respect his education and knowledge. He is medically trained, not me......Unlike you I don't direct him to what needs to be done...he knows....I may at times ask for this test or that, but that's it.   ..

I have a research background, and I did make a concerted effort to find the very best doctors to treat me....I look for artists, so I have confidence in what they say. 

h

 

xNTP
Posts: 34
Joined: Oct 2016

Thanks for your posts, H&O.   I'd really appreciate more links on your mentor's experience.  We can all benefit from each other's detailed experience, where cumulative small changes sometimes help lead to big improvements.

...that you are not focused on what needs to be done...that is have a biopsy......(if you read the history of my treatments, you will see that I have had most all of the  tests that you mentioned, if fact I have had 5 fusion mri/biopsies).

I have immediately prioritized the full suite 3T mp-MRI, and periodically for Active Surveillence.  I wouldn't blink two seconds over a good fusion guided biopsy option tomorrow.  

My doctor works for me...

Many don't or won't, where the thought of active listening, much less collaboration, gets a reflexive laugh.  The recent flak I've been through just to get simple blood tests drawn, pretty much destroyed this notion. Next.

...I respect his education and knowledge. He is medically trained, not me

Often overplayed and out of date, this grant needs to be very selective. I've lost a number of smart, older friends who felt this way and then realized their error too late (e.g. a biotech pioneer >100 patents).  I do gather and compare widely varying, multiple opinions for the serious stuff.

....Unlike you I don't direct him to what needs to be done...he knows....I may at times ask for this test or that, but that's it.

For specific skills, I of course typically rely on someone, or 2-3. For up to date on tx, I probably trust some of the literature MD/PhDs more.  Trust is a piecewise, "trust but verify" process for me.  I have far too much experience with and examples of vin ordinaire MDs being 5-10-20 yrs out of date, provincials, or just plain inattentive and arrogant, as well as common lapses and  miscommunications. For complex analyses and off-standard regimens, MDs just don't have the time or experimental skills.

I did make a concerted effort to find the very best doctors to treat me....I look for artists, so I have confidence in what they say. 

I am still early in this process for prostate services. 

hopeful and opt...
Posts: 2218
Joined: Apr 2009

In reading your response, I did not see an  indication of  when you  plan to have a biopsy? So where do you stand as far as scheduling a biopsy?

 

xNTP
Posts: 34
Joined: Oct 2016

prn, post 3T mp-MRI, MRI next 6-12 days?  I am shopping for fusion sites right now.  I don't have an acceptable 12 core solution right this moment unless driven by the mp-MRI.

Neither of the urologists is trying to drive me to a biopsy right this moment, although I get some sense they prefer or assume one  SOP.

 

 

VascodaGama's picture
VascodaGama
Posts: 2958
Joined: Nov 2010

xNTP

I agree that we should be more proactive in researches, finding the basis and details on health care and use doctors not just as means for obtaining recommendations but also to gather evidence on doubts. You are doing it well. In any case you should consider that all those tests you are describing above are simply predictive of cancer and that you should confirm any unusual positive or negative finding via a biopsy to complete the diagnosis.

It is already one month since you "embarked" on this journey. This is time to get some reliable information/conclusion on the high PSA of 8+ and BPH symptoms.

Best, VG

xNTP
Posts: 34
Joined: Oct 2016

Thanks, VG.  My next decision point is after the mp-MRI, where I may be squeezed on good MRI-TRUS fusion options for the next 9-15 months.  

I gather from the urologists' reactions to my data to date, is that I am likely not a high priority candidate that will yield a surgery or RT tx this year if too much doesn't show up on the mp-MRI.  I'm confident they would gladly provide, or script, a 12c TRUS biopsy in any case, "just to be $ure". 

One thing I've noticed over several family medical crises, is the serious lack of 1:1 correspondence between classical medical science, clinical medicine, and  many cheap answers, including  thorough workups.    If the mp-MRI doesn't yield anything dramatic, e.g. morbid features over 0.5 cm, I'm thinking I want to spend time on the workup of the prostatitis and BPH angles, as well as advanced management and experimental biochemistry for indolent PCa.        

Frankly, even if it takes me 3, 6 or 12 months, these other workups are what I think should have been available to me on days 1 and 2.   The  prostatitis-BPH-PCa situation with 1st-2nd gen PSA cries out for a simple, better, more thorough workup before biopsy, that seems to be missing today.  Also I want more information from any biopsy material than just Bostwick Lab's 2nd opinion, technical suggestions welcome.

Subscribe to Comments for "initial resistance"