Conflicting Pathology Reports

SantaZia
SantaZia Member Posts: 68 Member

I have a call into John Hopkins to discuss an interesting situation. John Hopkins did a second opinion of my biopsy slides confirming a 3+4=7 and increasing the percentage from 15% to 20% from my Santa Fe Pathology Report. However the MD Anderson Proton Center Oncologist is adamant that it is a 4+3=7 based on their pathology review. He stated they always go with the higher number, although he realises it is somewhat subjective. The biggest therapeutic difference between these grades is that more aggressive radiation therapy protocols are often given for Gleason score 4+3=7. I am wondering if having a more aggressive grade is useful for a Proton Center to receive insurance reimbursement or if he is just being careful with his treatment protocol. That is pretty cynical on my part, to think it is anything to do with insurance. Thanks for your input. 

Gleason 3=4+7 or 4+3=7 1.8 cm lesion MRI 3T latest PSA 1.4 after one month, 3 month shot of Lupron on May 21, 2018 PSA 12.7. 13.9, 13.2, 13.7 on Finasteride

Comments

  • Grinder
    Grinder Member Posts: 487 Member
    Quick story

    In 2003 at age 50 I had my first bout of prostatitis infection... went to the emergency room and a Foley catheter was put in and they sent me to my first urologist who threw away (literally) the antibiotics the hospital had given me. What he prescribed cleared up the infection fairly quickly. According to the urologist my PSA had dropped rapidly to normal range, and the DREs were all negative for any sign of PC, and the prostate had shrunk to normal size, and my UTI was gone and there was no more stricture.

    After about a week, he gave me the "all clear" and I was back to normal... or so I thought.

    Around a couple weeks later, I get a call out of the blue from the urologists office on a Monday, scheduling me for a biopsy on the Wednesday of that week, and I should pick up an "enema pack" the next day. I called his office to talk to him, and I asked him, why did you give me the all clear and now you think I have prostate cancer? He told me my PSA numbers were outrageous and if anyone off the street had walked in with those numbers, he would schedule them for prostate cancer biopsy and treatments immediately. 

    We were stunned. So my wife calls up the hospital that did the PSA, got the actual numbers since the urologist had never given us the actual numbers, and checked out my numbers on the ACS website. They had started at 8 and, just as my prostate was shrinking to normal size, my PSA was dropping to normal range. The ACS and other sites continued to reinforce the conclusion that I had a prostate infection that was cleared up, not prostate cancer.

    So why this sudden change of heart by the urologist? I checked out biopsies and at that time they had a biopsy machine that would tie up your legs spread eagle in stirrups, and a huge dildo fixed to the machine was rammed into your rectum to keep you perfectly still,  hence the enema, and what looked like a gatling gun with eight (?) large needles instead of bullet chambers would go through your skin in between your rectum and your scrotum and into your prostate.

    Yikes!

    Finally I called my insurance carrier and asked them if they were alarmed at my predicament.

    They told me that, as of the  coming Thursday, the day after my scheduled biopsy, that clinic and the urologist were being dropped as a Preferred Provider. Any treatments scheduled after that date would not be discounted, and my copay would skyrocket... unless I found a provider that would schedule the same treatment in network. But the health care consultant assigned by the insurance company was "concerned" to say the least after reviewing my case why I needed a biopsy and a possible prostatectomy anyway.

    If I had a biopsy and prostatectomy, both were being recommended by the urologist, back in 2003-4, it's very unlikely to have ended well... at least not as well as it did in 2016.

    But at least he would have gotten paid for the biopsy.

    Draw your own conclusions... he!! yes I am cynical.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    Grinder said:

    Quick story

    In 2003 at age 50 I had my first bout of prostatitis infection... went to the emergency room and a Foley catheter was put in and they sent me to my first urologist who threw away (literally) the antibiotics the hospital had given me. What he prescribed cleared up the infection fairly quickly. According to the urologist my PSA had dropped rapidly to normal range, and the DREs were all negative for any sign of PC, and the prostate had shrunk to normal size, and my UTI was gone and there was no more stricture.

    After about a week, he gave me the "all clear" and I was back to normal... or so I thought.

    Around a couple weeks later, I get a call out of the blue from the urologists office on a Monday, scheduling me for a biopsy on the Wednesday of that week, and I should pick up an "enema pack" the next day. I called his office to talk to him, and I asked him, why did you give me the all clear and now you think I have prostate cancer? He told me my PSA numbers were outrageous and if anyone off the street had walked in with those numbers, he would schedule them for prostate cancer biopsy and treatments immediately. 

    We were stunned. So my wife calls up the hospital that did the PSA, got the actual numbers since the urologist had never given us the actual numbers, and checked out my numbers on the ACS website. They had started at 8 and, just as my prostate was shrinking to normal size, my PSA was dropping to normal range. The ACS and other sites continued to reinforce the conclusion that I had a prostate infection that was cleared up, not prostate cancer.

    So why this sudden change of heart by the urologist? I checked out biopsies and at that time they had a biopsy machine that would tie up your legs spread eagle in stirrups, and a huge dildo fixed to the machine was rammed into your rectum to keep you perfectly still,  hence the enema, and what looked like a gatling gun with eight (?) large needles instead of bullet chambers would go through your skin in between your rectum and your scrotum and into your prostate.

    Yikes!

    Finally I called my insurance carrier and asked them if they were alarmed at my predicament.

    They told me that, as of the  coming Thursday, the day after my scheduled biopsy, that clinic and the urologist were being dropped as a Preferred Provider. Any treatments scheduled after that date would not be discounted, and my copay would skyrocket... unless I found a provider that would schedule the same treatment in network. But the health care consultant assigned by the insurance company was "concerned" to say the least after reviewing my case why I needed a biopsy and a possible prostatectomy anyway.

    If I had a biopsy and prostatectomy, both were being recommended by the urologist, back in 2003-4, it's very unlikely to have ended well... at least not as well as it did in 2016.

    But at least he would have gotten paid for the biopsy.

    Draw your own conclusions... he!! yes I am cynical.

    Second-Guess

    grinder,

    I've dealt a lot with insurance companies since my catastrophic accident in 1986, and the two later cancers.

    Insurance company reps are filth, the lowest of the low.  Medical and automotive companies are the same; it is the type of individuals who tend toward that sort of work. Clerks, with no medical knowledge, plugging diagnostic codes into software programmes.

    Any suspicion of insurance malfeasance is ordinarily warranted, in my somewhat jaundiced opinion.  It is insurance industry forces that have led the march away from routine PSA testing for men and Mammography for women.

    max

  • Old Salt
    Old Salt Member Posts: 1,285 Member
    Splitting hairs, it seems to me

    Forget for a minute those exact scores. It's clear that you have a substantial number of Gleason 4 cancer cells. There could be more sites in your prostate that are cancerous but that weren't biopsied. You have a high PSA, even on Finasteride.

    You need treatment as if you have aggressive prostate cancer, and a radiation oncologist at a world-class cancer institute (MD Anderson) states the same. No reason to have second thoughts!

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    edited June 2018 #5
    Old Salt said:

    Splitting hairs, it seems to me

    Forget for a minute those exact scores. It's clear that you have a substantial number of Gleason 4 cancer cells. There could be more sites in your prostate that are cancerous but that weren't biopsied. You have a high PSA, even on Finasteride.

    You need treatment as if you have aggressive prostate cancer, and a radiation oncologist at a world-class cancer institute (MD Anderson) states the same. No reason to have second thoughts!

    Loved it

    I loved your post, Old Salt (June 21).

    If some tests indicate 4+3, and others indicate 3+4, the reasonable, logical way to proceed is with the 4+3. Always, every time.  These doctors and insurance agents don't need to be rolling dice. 

    What next ? They take best 3 out of 5 results ?  Medicine should not be a crap shoot on the sidewalks of Brooklyn...

    max

  • Grinder
    Grinder Member Posts: 487 Member

    Second-Guess

    grinder,

    I've dealt a lot with insurance companies since my catastrophic accident in 1986, and the two later cancers.

    Insurance company reps are filth, the lowest of the low.  Medical and automotive companies are the same; it is the type of individuals who tend toward that sort of work. Clerks, with no medical knowledge, plugging diagnostic codes into software programmes.

    Any suspicion of insurance malfeasance is ordinarily warranted, in my somewhat jaundiced opinion.  It is insurance industry forces that have led the march away from routine PSA testing for men and Mammography for women.

    max

    I hope

    no one got the wrong impression. This was not a compliment to the insurance company at the time. But the urologist was trying to schedule as many procedures with patients of that insurance carrier as he could in the short time he had before he and his clinic would be removed from their network... whether they were necessary or not.

    This whole "network" scam does not serve the interest of patients. Hospitals are charging through the roof... mostly double or even triple what the standard cost should be, and still make a handsome profit for all involved. Insurance companies have the clout to demand costs be heavily discounted to the actual cost plus reasonable profit. 

    If you don't have insurance, or in a federal program, you have to negotiate those discounts yourself ... good luck with that.

    Then along comes "The Affordable Care Act" and just when you think this bizarre system might get reformed... the federal government, like a mobster protection racket, wants its "taste" of the health care action.

    And even though the insurance companies, the hospitals, and the federal government  have all got their fingers in the pie, by the Grace of God, this is still a great time to be alive, and the advances that have been made are stunning.

    Did I mention I had Lasik done on one eye? Entirely out of pocket of course. If insurance companies, hospitals, and government had been involved, the cost would have been quadrupled. As it is, free market principles are at play in Lasik surgery, so it is still affordable out of pocket... for now.

    But,  we figured something was not quite right about the first urologist's "rush to judgment"... and squeezing in procedures just before they got dropped was the smoking gun. I should have mentioned that originally he would not let me reschedule the procedure... it was the only opening  available, and my case was too "dire" to delay it past the scheduled date... the day before his clinic gets dropped by my insurance carrier.

     

  • Grinder
    Grinder Member Posts: 487 Member
    off topic

    I know this is off topic so this is the last I will say about the racket between the insurance carriers, the hospitals, and the government... but this shows how crazy this health care system has gotten away from free market principals...

    bill

    As you can see from my Prostatectomy statement...

    Hospital Bill for Prostatectomy... $55,717.02 (!)Surprised

    Network Discount to insurance carrier... $34,324.53 (!!)Surprised

    Final cost of Procedure... $19,333.16 (!)Surprised

    My copay... $2059.33

    Surprised

    That's a 60% discount given to the insurance company!

    And Portnoy thought he had a complaint!

    This is only the hospital bill. The surgeon and anesthesiologist etc. were seperate.

    This is not how "insurance" is supposed to work, at least in a free market.

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    .

    3+4=7 versus 4+3=7, both at reputable institutions....could be interpretation that can go either way.....and still, lots of 4....

    same thing happened with me 3+3=6 at primary instiution and 3+4=7 at Johns Hopkins........was treated as a 3+4=7, so had an extra biopsy, at the time,bsed on that information 

     

     

     

  • SantaZia
    SantaZia Member Posts: 68 Member
    edited June 2018 #9
    Yes I believe it is splitting Hairs Old Salt

    Well I suppose just like MD Anderson I should accept the 4+3=7 Good point Old Salt regarding my PSA and already being in the high intermediate range or unfavorable treatment outcome group. So I will take all your comments into consideration tomorrow when I visit again with my Santa Fe Radaition Oncologist.  He told me this in Feb. 2018 but you know how denial and barginning work. Anyway thanks everyone that helps. 

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    Grinder said:

    off topic

    I know this is off topic so this is the last I will say about the racket between the insurance carriers, the hospitals, and the government... but this shows how crazy this health care system has gotten away from free market principals...

    bill

    As you can see from my Prostatectomy statement...

    Hospital Bill for Prostatectomy... $55,717.02 (!)Surprised

    Network Discount to insurance carrier... $34,324.53 (!!)Surprised

    Final cost of Procedure... $19,333.16 (!)Surprised

    My copay... $2059.33

    Surprised

    That's a 60% discount given to the insurance company!

    And Portnoy thought he had a complaint!

    This is only the hospital bill. The surgeon and anesthesiologist etc. were seperate.

    This is not how "insurance" is supposed to work, at least in a free market.

    Exactly

    Your point here is exactly correct, Grinder.

    My bills for six months of intensive chemotherapy, plus all diagnostic works, surgeries, MD fees, and follow-up came to about $470,000.  Years later, when I went to an R.O at the same cancer center to discuss IGRT for my PCa, I mentioned this, in the context of whether RT or DaVinci costs more.

    He pointed out that the price I was charged was absurd, and that without ever even seeing my records, he knew that no one ever paid anything remotely like the amount I saw. He said that what the insurance company offer them to settle was vastly less money.  And he said that this is how the game is always played.  You are correct.

    It is similiar to how personal injury lawyers work:  They demand $500,000, the insurance company offers $75,000, and an agreement occures later somewhere between those two numbers.

    max

  • SantaZia
    SantaZia Member Posts: 68 Member
    pathologists have tended to award higher Gleason scores recently

    I thought this was good as far as why a Pathology review by at treating facility would be higher. https://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0032726/ Also some good info on HT and PSA
    There is evidence that, over time, pathologists have tended to award higher Gleason scores to the same histologic patterns, a phenomenon sometimes termed grade inflation.[24,25] This phenomenon complicates comparisons of outcomes in current versus historical patient series. For example, prostate biopsies from a population-based cohort of 1,858 men diagnosed with prostate cancer from 1990 through 1992 were re-read in 2002 to 2004.[24,25] The contemporary Gleason score readings were an average of 0.85 points higher (95% confidence interval, 0.79–0.91; P < .001) than the same slides read a decade earlier. As a result, Gleason-score standardized prostate cancer mortality rates for these men were artifactually improved from 2.08 to 1.50 deaths per 100 person years—a 28% decrease even though overall outcomes were unchanged.