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Thread: I Need To Vent

  1. #1
    Senior User Sw1218's Avatar
    Join Date
    Jul 2015
    Posts
    194

    I Need To Vent

    Happy Friday, all!
    I need to vent, if you don't mind. I've leaned that it's not that cancer sucks, it's the incompetence of doctors, the medical insurance co.'s, the staff of the medical facilities, the U.S. government and the pharmaceutical companies who are all in charge of our health care that sucks.

    We're encouraged to say things like "Cancer sucks" and "F-ck cancer". Why? Because when doing so, no one is being held accountable. When an entity or person has the power to say yay or nay over our health that could cost us your lives and possibly make a profit from it, that's dangerous and scary as h)ll. That's what sucks, not cancer.

    If you don't have a lot of money, or good insurance and you've been diagnosed with cancer, you're assed out. You may not die, but you will most certainly endure an unnecessary hell!
    D.O.B. 1973
    07/14 PSA 5.5
    08/14 Prostatitis & BPH
    07/15 PSA 5.9
    01/16 PSA 7.6
    03/16 PSA 6.2
    07/16 PSA 6.9
    10/16 PSA 6.9
    03/17 PSA 7.2
    05/17 3T MRI Good
    11/17 PSA 7.7
    11/18 PSA 10.8 Cipro for 2 wks
    07/18 PSA 11.9
    08/18 3T MRI: 3 lesions. No extra PCa disease, pelvic LAD, or pelvic lesions
    02/19 MRI Fusion Biopsy
    05/19 PSA 18.67
    05/19 PSA 14.81
    Bx Findings
    A. PROSTATE, LESION 1, LEFT APEX, 3D MRI FUSION BIOPSIES: * BENIGN
    B. LESION 2, RIGHT MID GLAND *PCa, GS 4+3=7 (GRADE GRP 3) 3 OF 3 CORES
    (95% DISCONTINUOUS, <5%, <5%) * GS GRADE 4 60% OF THE TUMOR
    0 PERINEURAL INVASION IS PRESENT
    INFLAMMATION.
    C. LESION 3, DIFFUSE LEFT MID GLAND, 3D MRI FUSION NEEDLE CORE BX's
    PCa, GS 3+4=7 (GRADE GRP. 2) LESS THAN 5% OF THE FRAGMENTED CORES
    GS GRADE 4 INVOLVES 5% OF THE TUMOR
    2nd Bx OPINION
    A. Benign
    B. PCa, GS 3+3=6 (Grade Grp. 1) 80% of 1 core
    C. PCa, GS 3+3=6 (Grade Grp. 1) 20% of 1 core

  2. #2
    Quote Originally Posted by Sw1218 View Post
    Happy Friday, all!
    I need to vent, if you don't mind. I've leaned that it's not that cancer sucks, it's the incompetence of doctors, the medical insurance co.'s, the staff of the medical facilities, the U.S. government and the pharmaceutical companies who are all in charge of our health care that sucks.

    We're encouraged to say things like "Cancer sucks" and "F-ck cancer". Why? Because when doing so, no one is being held accountable. When an entity or person has the power to say yay or nay over our health that could cost us your lives and possibly make a profit from it, that's dangerous and scary as h)ll. That's what sucks, not cancer.

    If you don't have a lot of money, or good insurance and you've been diagnosed with cancer, you're assed out. You may not die, but you will most certainly endure an unnecessary hell!
    Don't get me started on the U.S. insurance issue. There are certain common goods and services that we all pay for -- roads (even if you don't drive), schools (even if you have no kids) -- Even with insurance, a major illness can be devastating financially. We all pay for treating the complications of, e.g., advanced diabetes for the uninsured that happen because (cheaper) preventive care wasn't available. Other countries in our league have made the remarkable discovery that most people get sick at some point, and they have make smart health-care decisions as a result.

    As far as health care right now (in this era of "screw you"), looking at it subjectively (and, unfortunately and necessarily, egoistically), one key is IMO finding good doctors. If you have a good doctor, you have a better chance of not being towards the bottom of the rotten statistics. I was able to find an excellent internist, who, over the years referred me to my uro(s), gastroenterologist (for my colonoscopies), dermatologist, and cardiologist (for a stress test). There is no question that (good insurance) is crucial; but for now we each have to make the best of what we have. When my internist left the practice for research, he suggested one of the other docs in the practice, equally good, with whom he felt we'd have the best "fit."

    If you aren't satisfied with your current doc/uro, ask the Forum for public (or PM) recommendations of names in your area.

    Djin
    Last edited by DjinTonic; 09-13-2019 at 04:11 PM.
    69 yr at Dx, BPH x 20 yr, 9 (!) neg. Bx, PCA3-
    7-05-13 TURP for BPH (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

  3. #3
    Quote Originally Posted by Sw1218 View Post
    Happy Friday, all!
    I need to vent, if you don't mind. I've leaned that it's not that cancer sucks, it's the incompetence of doctors, the medical insurance co.'s, the staff of the medical facilities, the U.S. government and the pharmaceutical companies who are all in charge of our health care that sucks.

    We're encouraged to say things like "Cancer sucks" and "F-ck cancer". Why? Because when doing so, no one is being held accountable. When an entity or person has the power to say yay or nay over our health that could cost us your lives and possibly make a profit from it, that's dangerous and scary as h)ll. That's what sucks, not cancer.

    If you don't have a lot of money, or good insurance and you've been diagnosed with cancer, you're assed out. You may not die, but you will most certainly endure an unnecessary hell!
    There are several different issues in action at one time. I am addressing insurance.

    My under age 65 insurance is provided by my pension. As insurance goes, it is neither a plush or bare bones plan. Everything that my policy says they will cover they have. Tests that require insurance approval have all been promptly approved. Genomics tests are not covered by my policy and the insurance denied payment for my D test. I have been satisfied with the insurance although my out of pocket was >$5k

    My point is most people never read their policies and have no knowledge what it covers until they are ill. This is the problem with an employer based system where the company decides how much they are willing to pay then shop for the best insurance and the employee has to take what is offered.
    YOB 1957

    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.

    3/6/19. Pathology - Grade Group 4 with Intraductal Carcinoma
    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)

    3 Part Modality Treatment

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

    ADT - started 6/19, end date 6/21.

    ART - Completed 9/26/19. (78 Gy, yes, I glow in the dark)

  4. #4
    Regular User
    Join Date
    Jun 2019
    Posts
    13
    Let me add a bit of my own venting here-

    I have pretty good insurance from Blue Shield that I spend around $32k/year for. That's for myself, my wife and our daughter. The last two years saw 22% and 11% rate increases. In the last three days I spent around five hours fighting against a hospital bill. They said I owed $2,441 more. I created a spreadsheet with the insurance claims and all the bills. The surgeon's bills exactly matched what the insurance claims said my responsibility was. Same for the anesthesiologist. The hospital bill, on the other hand, was for more than double the amount the insurance said was my responsibility. It all happened because the UCLA hospital asked me for prepayment of around $2,900 before each of the two procedures that was never included in the insurance claims. Beware of prepayments. Long story short, the insurance rep. got them to lower the bill to the expected amount in five minutes after they would simply not listen to me after two separate calls. This turned a bill for $2,441 into a refund of $1,500!

    Now to rant about doctors-

    Neither my primary care (internal medicine) doctor nor my D.O. who was prescribing testosterone knew that finasteride (which I was taking to prevent hair loss) lowers the PSA results by around a factor of two. I would still be walking around with prostate cancer if I had listened to my primary care doctor. Despite my PSA coming in at 4.1, then 4.4 on re-check (4.0 ng/dl normal limit) and my showing the primary care doctor a paper on the effects of finasteride on PSA, he still didn't think a biopsy was needed. I only learned about the effect of finasteride on PSA from a chance visit to a urologist on an unrelated matter a few months before the check up with the PSA out-of-limits. Luckily I didn't need a referral with my insurance so I just made the appt. with the urologist and he immediately said "biopsy."

    Additional doctor rant-

    Why is it so hard to get any stats on doctors? The reviews on-line are worthless IMHO. Everyone is focused on interpersonal skills and bedside manner. When you're looking at a serious health issue where your prognosis is dependent on the skill of a surgeon, does bedside manner really matter? Hell no. I want the most competent surgeon I can get. I found it nearly impossible to find out how many prostate Brachytherapy procedures and monthly volume of procedures doctors were doing. Even calling the practice and asking got me nowhere. I finally found a website (UCLA Medical Center) that listed the number of times the two doctors doing Brachytherapy had performed the procedure. I went with a doctor who was averaging 17 procedures per week and had done over 5,000 total. I had searched throughout California and called several locations before finding the place I finally went with. This was the only place that I could get stats for.

    Ok, no more ranting. It's a nice sunny day in San Diego, I'm going out to play golf!
    PSA history: (raw-->corrected*)
    ------------------------------------
    6/16: 2.5 --> 5.0
    7/17: 3.1 --> 6.2
    3/18: 3.1 --> 6.2
    1/19: 4.1 --> 8.2
    * 8 years finasteride use. Initially 1.25mg/day, then 2.5mg/day for last year prior to diagnosis.

    Age 59, 12 core biopsy 3/5/2019
    --------------------------------------------
    Left lateral mid: Gleason 3+3, 10% affected
    Left lateral apex: Gleason 3+4(10%), 30% affected
    Left medial mid: Gleason 3+4(10%), 5% affected
    Left medial apex: Gleason 3+4(10%), 80% affected

    ---------------------
    DRE negative
    MRI negative
    Prostate volume: 27cc
    Testosterone: 251. Nine years on TRT. Discontinued when I suspected I might have prostate cancer.

    Two session (mono) HDR brachytherapy May/June 2019

  5. #5
    Senior User
    Join Date
    Aug 2017
    Posts
    301
    If you are unlucky enough to be diagnosed, yet lucky enough to have found a doctor who did the right things, I've found that local support groups can be very helpful in sharing experiences with doctors, insurances, and generally insightful information. Our group even gets presentations and questions/answers from local doctors. This board does a great job from a national/international perspective, but finding out information that's useful on a local basis is invaluable.
    PSA 8/31/15 4.01
    PSA 3/03/16 4.15
    PSA 8/28/16 3.94
    PCA3 9/16 low risk
    PSA 5/10/17 7.49,
    PSA 9/2/17 9.77
    Biopsy 6/7/17 Left Apex Gleason 6, less than 5% of core. Right Apex Gleason 6, 35% of core.
    OncotypeDX GPS score 43- high risk.
    Bone scan 7/11/17. 11th left rib iffy.
    Bone biopsy 8/11/17. Negative.
    3T MRI 7/19/17. 3.5 cm liposarcoma found behind bladder.
    CT Scans of chest and pelvis 7/31/17. Negative
    RALP 9/25/17
    Histologic Type: Adenocarcinoma
    Total Gleason Score: 6
    Tumor Quantitation: Less than 5%
    Location of dominant tumor nodule: Left posterior lobe apex to mid
    Extraprostatic Extension: Not identified
    Seminal Vesicle Invasion: Not identified
    Margins: Uninvolved by carcinoma
    Lymph-Vascular Invasion: Not Identified
    Primary Tumor: pT2c (organ confined; tumor involves both lobes)
    Regional Lymph NodesN0 (No metastasis)
    Number of lymph nodes examined 6 ;nodes involved 0
    Distant Metastasis: cM0
    Working Stage Grouping: Stage IIB (T2c N0 M0)

  6. #6
    Top User garyi's Avatar
    Join Date
    Apr 2017
    Posts
    1,373
    Quote Originally Posted by TRTGuy View Post

    Why is it so hard to get any stats on doctors?
    Because, for the most part, they don't want to share them. Getting a straight answer to how many prostate operations, radiations, complications, and so forth is impossible. Think they don't know? When you get an answer, integrity is usually an issue. Caveat Emptor!
    72...LUTS for the past 7 years
    TURP 2/16,
    G3+4 discovered
    3T MRI 5/16
    MRI fusion guided biopsy 6/16
    14 cores; four G 3+3, one G3+4,
    CIPRO antibiotic = C. Diff infection 7/16
    Cured with Vanco for 14 days
    Second 3T MRI 1/17
    Worsened bulging of posterior capsule
    Oncotype DX GPS 3/17, LFP risk 63%, Likelihood of Low
    Grade Disease 81%, Likelihood of Organ Confined 80%
    RALP 7/13/17 Dr. Gonzaglo @ Univ of Miami
    G3+4 Confirmed, Organ confined
    pT2 pNO pMn/a Grade Group 2
    PSA 0.32 to .54 over 3 months
    DCFPyl PET & ercMRI Scans - 11/17
    A one inch tumor still in prostate bed = failed surgery
    All met scans clear
    SRT, 2ADT, IMGT 70.2 Gys @1.8 per, completed 5/18
    Radiation Procitis, and Ulcerative Colitis flaired after 20 years
    PSA <.006 9/18, .054 11/18, .070 12/18, .067 2/19, .078 5/19, .074 7/19, .081 9/19
    We'll see....what is not known dwarfs what is thought to be fact

  7. #7
    Quote Originally Posted by TRTGuy View Post
    Why is it so hard to get any stats on doctors? The reviews on-line are worthless IMHO. Everyone is focused on interpersonal skills and bedside manner. When you're looking at a serious health issue where your prognosis is dependent on the skill of a surgeon, does bedside manner really matter? Hell no. I want the most competent surgeon I can get.
    I don't think stats are that useful in determining skill levels for surgeons at all.

    Some patients present with more serious disease, where an ideal result might not always be possible- others come into surgery with a more routine situation. If the top guy gets assigned the toughest cases, he might have worse stats, even though he is the better surgeon. If a surgical group assigns craniotomies to Dr. Harvey Cushing, he's going to lose more patients than Dr. Vinny Boombatz will, if Dr. Boombatz is doing wart removals. Doesn't mean that Boombatz is a better surgeon than Cushing.
    Nov 2013 PSA 4.2 Biopsy Jan 2014- 1 core positive, 20% Gleason 6, doctor highly reco'ed robotic RP - 2nd opinion at UPMC April 2014, put on active surveillance. 2nd biopsy Feb 2015, results negative. PSA test Feb 2016, 3.5. 3rd Biopsy Feb 2016. 3 positive cores less than 5%, Gleason 6. Octotype DX done April 2016, GPS Score of 24--rated "Low risk". PSA test 8/2016, 3.2. PSA test 1/2018 2.2 (after 7 months of proscar) PSA test 7/2018 2.3, PSA test 7/2019 2.0


    DOB 1956, in Pittsburgh, USA

  8. #8
    Quote Originally Posted by Southsider View Post
    I don't think stats are that useful in determining skill levels for surgeons at all.

    Some patients present with more serious disease, where an ideal result might not always be possible- others come into surgery with a more routine situation. If the top guy gets assigned the toughest cases, he might have worse stats, even though he is the better surgeon. If a surgical group assigns craniotomies to Dr. Harvey Cushing, he's going to lose more patients than Dr. Vinny Boombatz will, if Dr. Boombatz is doing wart removals. Doesn't mean that Boombatz is a better surgeon than Cushing.
    How did I determine my surgeon at Cleveland Clinic? Called a friend who was a Pharma rep who calls on Cleveland doctors. He called his connections who were cancer Pharma reps, they used their contacts to get me the names of their 3 best URO surgeons. My surgeon was the one I told was the best. 7 months post surgery, I think he was probably one of the top 10 in the US if not in the top 5.
    Last edited by Duck2; 09-14-2019 at 02:24 PM.
    YOB 1957

    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.

    3/6/19. Pathology - Grade Group 4 with Intraductal Carcinoma
    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)

    3 Part Modality Treatment

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

    ADT - started 6/19, end date 6/21.

    ART - Completed 9/26/19. (78 Gy, yes, I glow in the dark)

  9. #9
    Quote Originally Posted by Duck2 View Post
    How did I determine my surgeon at Cleveland Clinic? Called a friend who was a Pharma rep who calls on Cleveland doctors. He called his connections who were cancer Pharma reps, they used their contacts to get me the names of their 3 best URO surgeons. My surgeon was the one I told was the best. 7 months post surgery, I think he was probably one of the top 10 in the US if not the top 5.
    From the info in your signature, Duck,you have presented with a more complex case. I was told by knowledgable people that the top surgeon at UPMC doesn't do Gleason 6 prostatectomies, they are done by surgeons lower on the food chain over there. It makes sense to me that if someone comes in sicker, the "superstar" doctors get called into the job quicker
    Nov 2013 PSA 4.2 Biopsy Jan 2014- 1 core positive, 20% Gleason 6, doctor highly reco'ed robotic RP - 2nd opinion at UPMC April 2014, put on active surveillance. 2nd biopsy Feb 2015, results negative. PSA test Feb 2016, 3.5. 3rd Biopsy Feb 2016. 3 positive cores less than 5%, Gleason 6. Octotype DX done April 2016, GPS Score of 24--rated "Low risk". PSA test 8/2016, 3.2. PSA test 1/2018 2.2 (after 7 months of proscar) PSA test 7/2018 2.3, PSA test 7/2019 2.0


    DOB 1956, in Pittsburgh, USA

  10. #10
    Quote Originally Posted by Southsider View Post
    From the info in your signature, Duck,you have presented with a more complex case. I was told by knowledgable people that the top surgeon at UPMC doesn't do Gleason 6 prostatectomies, they are done by surgeons lower on the food chain over there. It makes sense to me that if someone comes in sicker, the "superstar" doctors get called into the job quicker
    I don’t think it would have worked as you suggest if I had just called CC and said I need a surgeon - I would have been assigned any surgeon.

    I went to the head of Urology first, he then offered up 3 surgeons at CC. The 3 names were the same from my research. I took the one who my researchers said was the best, but when you have the offer of one of the 3 best surgeons at arguably the nations top urology hospital you are in pretty good hands.
    Last edited by Duck2; 09-14-2019 at 03:10 PM.
    YOB 1957

    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.

    3/6/19. Pathology - Grade Group 4 with Intraductal Carcinoma
    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)

    3 Part Modality Treatment

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

    ADT - started 6/19, end date 6/21.

    ART - Completed 9/26/19. (78 Gy, yes, I glow in the dark)

 

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