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Thread: Reconciling pathology report with insurance company requirements

  1. #1
    Newbie New User
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    Reconciling pathology report with insurance company requirements

    Hi, everyone. This is my first post. I had a prostectomy in February 2018, followed by anti-hormonal treatment (which goes on and may end in a few more months) and then seven weeks of radiation. I've since had three PSA tests reporting that cancer is undetectable (<0.1). That's down from a 10 PSA reading just prior to treatment. I'm doing okay physically except for the usual reported side effects, which at this point aren't horrible.

    The diagnosis after biopsy and CAT scan was:
    IV T3 b N1 metastatic adrenocarcinoma Gleason 4+5.

    I know what all of that means except the IV and b. My spouse immediately assumed the IV meant Stage 4, but that seems inconsistent with the T3. The surgeon has been kind and helpful with a great bedside manner. However he has been somewhat ambiguous every time I have asked him to reconcile this. He merely says Stage 4 as in popular culture's "end of the road, buddy" and my numbers are different. The "metastatic" reference, I was told, was to the finding that cancer had spread from the prostate to nearby tissue, which is why RT was targeted there; I was told there was no sign of it elsewhere in my body.

    I could just run with all that and be a satisfied optimist, except for this: I received my diagnosis just as my retirement plan's Long Term Care Insurance was being finalized. Unluckily for me, the underwriters pulled my medical history right after diagnosis and promptly rejected my application. I was told I could reapply when I was judged free of cancer. I brought up the idea of reapplying recently and the insurance agent came back to me with this: If I had Stage One cancer, I could reapply for LTC coverage one year after treatment assuming I am cancer-free. If I had Stage Four cancer, I must wait five years. Obviously, pre-existing conditions apply as far as this insurer (Mutual of Omaha) is concerned.

    Anyone who can help me sift through the lack of clarity in all this will receive a virtual box of cookies.

  2. #2
    Pre-existing conditions are only allowed and relevant to the ACA (Obamacare), which the Trump administration lawyers are trying to kill right now, although they have no plan to replace it.

    So, unless you have a good company plan, or are a billionaire, good luck.

    You only deserve what you vote for. Never vote for vague promises.
    DOB: May 1944
    In Active Surveillance program at Johns Hopkins
    Strict protocol of tests, including PHI, DRE, MRI, and biopsy.
    Six biopsies from 2009 to 2019. Numbers 1, 2, and 5 were negative. Numbers 3,4, and 6 were positive with 5% Gleason(3+3) found. Last one was Precision Point transperineal.
    PSA 4.4, fPSA 24, PHI 32
    Hopefully, I can remain untreated. So far, so good.

  3. #3
    Quote Originally Posted by RML View Post
    Hi, everyone. This is my first post. I had a prostectomy in February 2018, followed by anti-hormonal treatment (which goes on and may end in a few more months) and then seven weeks of radiation. I've since had three PSA tests reporting that cancer is undetectable (<0.1). That's down from a 10 PSA reading just prior to treatment. I'm doing okay physically except for the usual reported side effects, which at this point aren't horrible.

    The diagnosis after biopsy and CAT scan was:
    IV T3 b N1 metastatic adrenocarcinoma Gleason 4+5.

    I know what all of that means except the IV and b. My spouse immediately assumed the IV meant Stage 4, but that seems inconsistent with the T3. The surgeon has been kind and helpful with a great bedside manner. However he has been somewhat ambiguous every time I have asked him to reconcile this. He merely says Stage 4 as in popular culture's "end of the road, buddy" and my numbers are different. The "metastatic" reference, I was told, was to the finding that cancer had spread from the prostate to nearby tissue, which is why RT was targeted there; I was told there was no sign of it elsewhere in my body.

    I could just run with all that and be a satisfied optimist, except for this: I received my diagnosis just as my retirement plan's Long Term Care Insurance was being finalized. Unluckily for me, the underwriters pulled my medical history right after diagnosis and promptly rejected my application. I was told I could reapply when I was judged free of cancer. I brought up the idea of reapplying recently and the insurance agent came back to me with this: If I had Stage One cancer, I could reapply for LTC coverage one year after treatment assuming I am cancer-free. If I had Stage Four cancer, I must wait five years. Obviously, pre-existing conditions apply as far as this insurer (Mutual of Omaha) is concerned.

    Anyone who can help me sift through the lack of clarity in all this will receive a virtual box of cookies.


    Be thankful the pathologist didn’t assign your cancer a grade 5, your doctor, wife and the insurance would claim you are dead.
    Last edited by Duck2; 07-15-2019 at 04:26 AM.
    DOB 5/1957

    PSA - 11/2010=1.9, 6/12=2.3, 12/13=2.19, 12/14=2.64, 3/17=5.29, 3/17=3.91, 6/17=3.47, 12/17=4.50, 12/17=3.80, free PSA low risk (local (Uro, “My opinion you don’t have cancer), 8/18=5.13, 10/18=5.1, 10/19 ISO PSA 56% risk cancer. All DREs negative.

    DX 12/18, GS 8, 4+4 6/12 cores, LL Apex 100%, LM Apex 60%, LL Mid 50%, LMM 40%, LL Base 5%, LM <5%, Right side negative, (Uro opinion “This has been going on for a year”.... ah, more like 2 years ). Bone scan/CT negative

    2/25/19 Robotic Laparoendoscopic Single Site Surgery outpatient Cleveland Clinic,

    3/6/19. Pathology - Grade Group 4 with Intraductal Carinoma
    T3aNO, GS8, 21 mm unifocal tumor 10%. -7 Nodes, - SV, - Margins, - PNI,
    - bladder neck neg., +LVI, + EPE non focal apex/mid lateral 1mm max extension, Cribriform pattern present. Decipher .86 High Risk.

    PSA 3/27/19 .03. (29 days)
    4/25/19 <.03. (58 days)
    5/25/19 <.02. (88 days)
    9/10/2019. <.02. (198 days)

    ADT - 6/3/19
    ART - 8/5/19

  4. #4
    Moderator Top User HighlanderCFH's Avatar
    Join Date
    Nov 2011
    Posts
    7,206
    You'll find lots more info & comments after the weekend, RML. I find it hopeful that your PSA was only 10. In the great majority of cases, distant metastasis is usually in double digits, which suggests that yours had not escaped very far from the prostate.

    This would further suggest that a cure could be in your future.

    Welcome to the forum -- and stay tuned tomorrow for lots more help.
    July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA 9/ 2011 = 5.7.
    Local uro DRE revealed significant BPH, no lumps.
    PCa Dx Aug. 2011 age of 61.
    Biopsy DXd adenocarcinoma in 3/20 cores (one 5%, two 20%). T2C.
    Gleason 3+3=6. CT abdomen, bone scan negative.
    DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
    Surgeon was Dr. Matthew Tollefson, who I highly recommend.
    Final pathology shows tumor confined to prostate.
    5 lymph nodes, seminal vesicules, extraprostatic soft tissue all negative.
    1.0 x 0.6 x 0.6 cm mass involving right posterior inferior, right posterior apex & left
    mid posterior prostate. Right posterior apex margin involved by tumor over 0.2 cm length,
    doctor says this is insignificant.
    Prostate 98 grams, tumor 2 grams.
    Catheter out in 7 days. No incontinence, minor dripping for a few weeks.
    Seven annual post-op exams 2012 through 2018: PSA <0.1
    Semi-firm erections without "training wheels," usable erections with 100mg Sildenafil.
    NOTE: ED caused by BPH, not the surgery.

  5. #5
    Senior User
    Join Date
    Nov 2018
    Posts
    242
    You would think you could go to a prostate cancer forum without someone dragging politics in and giving advice on how to vote. Seems you can't go anywhere on the internet where one side or the other doesn't bring in their political views or lecture. That's fine but I could care less about anyone's political views, I'm here because of PC.

  6. #6
    Newbie New User
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    I appreciate your thoughts, HighlanderCFH.

    Despite this and other age-related ailments, I still consider myself lucky. I'm two years past surgery, and I'm a couple months from age 70, which too many of my friends and family members failed to make. Every day is a bonus from here on out. Even the bad days. Regarding comments from others, I wouldn't care about long-term care insurance except for the financial ding the lack of it might impose on my wife and other family members. So I'm going to see that issue through, for their sake as much as mine.

    Quote Originally Posted by HighlanderCFH View Post
    You'll find lots more info & comments after the weekend, RML. I find it hopeful that your PSA was only 10. In the great majority of cases, distant metastasis is usually in double digits, which suggests that yours had not escaped very far from the prostate.

    This would further suggest that a cure could be in your future.

    Welcome to the forum -- and stay tuned tomorrow for lots more help.

  7. #7
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    I hear you, Senior User, and agree. I'm in the camp of better health coverage for all. That said -- and that's all I'm going to say on that here -- I realize pre-existing conditions are very much a continuing issue in the wholly private-sector insurance industry. So much for shared risk! But I am not here to get into a debate on that. For my purposes here that's not the issue. The issue is how to interpret my #$%* pathology report. Everyone else who wants to pursue the big sociopolitical issues of health care reform can seek me out on other social media where politics are my primary concern.

    Quote Originally Posted by nmguy View Post
    You would think you could go to a prostate cancer forum without someone dragging politics in and giving advice on how to vote. Seems you can't go anywhere on the internet where one side or the other doesn't bring in their political views or lecture. That's fine but I could care less about anyone's political views, I'm here because of PC.

  8. #8
    Quote Originally Posted by RML View Post
    Hi, everyone. This is my first post. I had a prostectomy in February 2018, followed by anti-hormonal treatment (which goes on and may end in a few more months) and then seven weeks of radiation. I've since had three PSA tests reporting that cancer is undetectable (<0.1). That's down from a 10 PSA reading just prior to treatment. I'm doing okay physically except for the usual reported side effects, which at this point aren't horrible.

    The diagnosis after biopsy and CAT scan was:
    IV T3 b N1 metastatic adrenocarcinoma Gleason 4+5.

    I know what all of that means except the IV and b. My spouse immediately assumed the IV meant Stage 4, but that seems inconsistent with the T3. The surgeon has been kind and helpful with a great bedside manner. However he has been somewhat ambiguous every time I have asked him to reconcile this. He merely says Stage 4 as in popular culture's "end of the road, buddy" and my numbers are different. The "metastatic" reference, I was told, was to the finding that cancer had spread from the prostate to nearby tissue, which is why RT was targeted there; I was told there was no sign of it elsewhere in my body.

    I could just run with all that and be a satisfied optimist, except for this: I received my diagnosis just as my retirement plan's Long Term Care Insurance was being finalized. Unluckily for me, the underwriters pulled my medical history right after diagnosis and promptly rejected my application. I was told I could reapply when I was judged free of cancer. I brought up the idea of reapplying recently and the insurance agent came back to me with this: If I had Stage One cancer, I could reapply for LTC coverage one year after treatment assuming I am cancer-free. If I had Stage Four cancer, I must wait five years. Obviously, pre-existing conditions apply as far as this insurer (Mutual of Omaha) is concerned.

    Anyone who can help me sift through the lack of clarity in all this will receive a virtual box of cookies.
    Hi RML, and Welcome to the Forum! I'll take a stab at adding some information.

    "Stage IVA: The cancer has spread to the regional lymph nodes." More about the complicated TNM staging and cancer staging definitions here. TNM staging is part of the overall cancer staging. (Insurance concerns aside, here in the Forum we usually report our TMN staging and generally ignore the I-IV cancer staging.)

    The N1, as you may know, means that there was a positive lymph node (or nodes) found. And since this is a path report based on the tissue removed during the RP, I would assume this was a pelvic (and/or perhaps iliac) node(s). Unless you were told that imaging (a bone scan, PET, CAT, or other) identified likely mets somewhere else (which you were not), I would assume those found were all lymph nodes removed along with the prostate (your path report should enumerate the negative and positive lymph nodes). In other words, local, not distant, nodes, so IMO this would be locally advanced PCa and the logic behind your follow-up RT to the area where the prostate was. You could very well be cancer-free now.

    pT3b -- The "b" after T3 means one or both seminal vesicles showed some degree of cancer involvement. (The "p" is usually there in the path report, indicating that this is an assessment based on pathological examination. "c" as in cT... is used for clinical evaluations, often done at the time of diagnosis. "Metastatic" means that malignant area(s) were found that are not adjacent to the prostate (like positive surgical margins, extraprostatic extension, and seminal vesicle invasion.) Positive lymph nodes count as metastases. (When PCa metastasizes, in addition to lymph nodes, it has an strong affinity for bone, and then other organs, such as the liver and lungs.

    Do you have a written copy of the pathology report done right after your surgery? If not, you should get it for your records. I ask because rereading your post, I am a little confused. You said:

    The diagnosis after biopsy and CAT scan was:
    IV T3 b N1 metastatic adrenocarcinoma Gleason 4+5.
    but the title of your post mentions "pathology report"

    Gleason scores based on biopsies are often up- or downgraded after surgery. And nodes that are suspicious for cancer on scans are confirmed or not upon examined after surgery as well. This is why the path report is so important. You want the TNM assessment done based on your pathology, not a pre-surgery clinical assessment. PCa cannot be definitively diagnosed from images.

    Adenocarcinoma is the most common histological type of prostate cancer categorized by microscopic appearance (there are other, less common types). Adeno- just means gland- or sac-like.

    Another term/category that is being used is oligometastatic prostate cancer, the definition of which is (usually) from 1-5 metastases (oligo- meaning few). The mets can be local and/or distant.

    You have every reason and right to inquire with your surgeon about the exact meaning of the "IV" and any other part of your path (or other) report that you want clarified.

    I hope this helps. If I got anything right, no box of cookies needed (they stopped making Hydrox long ago.) Others will correct any mistakes I've made.

    Djin
    Last edited by DjinTonic; 07-15-2019 at 04:39 PM.
    69 yr at Dx, BPH x 20 yr, 9 (!) neg. Bx, PCA3 -
    7-05-13 TURP (90→30 g) path neg. then 6-mo. checks
    6-06-17 Nodule on R + PSA rise on finasteride: 3.6→4.3
    6-28-17 Bx #10: 2/14 cores: G10 (5+5) 50% RB, G9 (4+5) 3% RLM
    Bone scan, CTs, X-rays: neg.
    8-7-17 Open RP, neg. frozen sections, Duke Regional
    SM EPE BNI LVI SVI LNI(16): negative, PNI+, nerves spared
    pT2c pN0 pMX acinar adenocarcinoma G9 (4+5) 5% of prostate (4.5x5x4 cm, 64 g)
    11-10-17 Decipher 0.37 Low Risk: 5-yr met risk 2.4%, 10-yr PCa-specific mortality 3.3%
    Dry; ED OK with sildenafil
    9-16-17 (5 wk) PSA <0.1
    LabCorp uPSA, Roche ECLIA:
    11-28-17 (3 m ) 0.010
    02-26-18 (6 m ) 0.009
    05-30-18 (9 m ) 0.007
    08-27-18 (1 yr.) 0.018 (?)
    09-26-18 (13 m) 0.013 (30-day check)
    11-26-18 (15 m) 0.012
    02-25-19 (18 m) 0.015
    05-22-19 (21 m) 0.015
    08-28-19 (2 yr. ) 0.016
    Avg. = 0.013

  9. #9
    Hello RML and welcome to the forum. As always Djin has things about covered. As pointed out, please feel free to press your doctor about this report and receive some clarity. This PCa business is stressful enough without having to guess about things. Every patient deserves the time for a surgeon to sit down and explain things line item....please keep us posted on your progress. MM
    DOB:Feb 1958
    PSA: 9/15: 5.9
    DRE: Negative
    Biopsy: 10/1/15. Second Opinion University of Chicago. +9 of 12 cores. G6: 5 cores, G7 ( 4+3) 4 cores
    10/12/15: -CT scan/BS
    Clinical Staging: 10/28/15 T2c
    ( RALP) UC 12/29/15

    Final Pathology Report; Jan. 6 2016

    -15 lymph nodes
    G9 ( 4+5)
    +EPE
    +LVI
    +Right SV -Left SV and vasa deferentia,
    PI present
    PM
    pT3bNO
    uPSA 2/9/16 0.05
    uPSA 3/23/16 0.11
    Casodex 4/1/16-8/5/16
    Lupron 4/15/16-5/15/18
    SRT 6/14/16...8/5/16 38Tx
    uPSA 8/10/16---8/22/19 <0.05
    Feb. 2017 Loyola Chicago
    11/15/2018 AUS 800 Implanted
    12/18/18...T Levels...Free T 42.8...Total T...262

  10. #10
    nmguy....Well said. let's keep this a support and information forum.
    DOB:Feb 1958
    PSA: 9/15: 5.9
    DRE: Negative
    Biopsy: 10/1/15. Second Opinion University of Chicago. +9 of 12 cores. G6: 5 cores, G7 ( 4+3) 4 cores
    10/12/15: -CT scan/BS
    Clinical Staging: 10/28/15 T2c
    ( RALP) UC 12/29/15

    Final Pathology Report; Jan. 6 2016

    -15 lymph nodes
    G9 ( 4+5)
    +EPE
    +LVI
    +Right SV -Left SV and vasa deferentia,
    PI present
    PM
    pT3bNO
    uPSA 2/9/16 0.05
    uPSA 3/23/16 0.11
    Casodex 4/1/16-8/5/16
    Lupron 4/15/16-5/15/18
    SRT 6/14/16...8/5/16 38Tx
    uPSA 8/10/16---8/22/19 <0.05
    Feb. 2017 Loyola Chicago
    11/15/2018 AUS 800 Implanted
    12/18/18...T Levels...Free T 42.8...Total T...262

 

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