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  • Up-Date From Big Al PSA Retest

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    Old 02-12-2020, 09:42 AM   #16
    Bigalcalbisque
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    Re: Up-Date From Big Al PSA Retest

    Thank you everybody, good info! I never even thought about insurance!!
    My surgery only cost me $2,800, My insurance plan is through Medi-Care and $2,800 is the most that I have out of pocket expenses in a calendar year so it was money well spent. I dont have plan B as to me it was not cost effective. Because of your posts, I am going to check in with my Provider so I better understand what my costs will be moving forward along with what my numbers are and how they relate to what they will allow to happen, as far as coverage goes. BTW: I was on the previous board for over 2 years, and some of you may be familiar with me and others not. The support from those that were was immeasurable! And I am glad that this forum is here to help. I do realize that there is a wide range of experience here from Newbies to Old Dudes and I think for most parts none of us is a Doctor but that isn't important to me. I just get a lot from the folks on this board that feel it is worth their while to support one another.
    Thanks, Al
    __________________
    7-1-2017 Biopsy. PSA 6.3 Cancer Left Apex 3+3=6 Tumor 1.5mm 5%
    Cancer Rt Base 4+3=7 Tumor 4mm(Aggregate) 25% Perineural Invasion: Not Identified.
    9-27-2017 Robotic Surgery.
    Pathology Report 10-2-2017 Gleason 7 (4-3)11 Lymph Nodes Negative/PT3A-PN0
    Positive Rt Posterior Margin Less than or = to 3mm. Urinary Bladder Neck Invasion/Not Identified. Seminal Vesicle Invasion/Not Identified. Tumor weight=48.6 Grams
    EPE Presnt Focal Right Posterior
    7 PSA tests every 3 months less than or = to .02
    PSA test 9-27-2019 .02
    PSA test 1-23-2020 .07

     
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    Old 02-12-2020, 10:12 AM   #17
    IADT3since2000
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    Re: Up-Date From Big Al PSA Retest

    Patient Empowerment and Patient Forums for Prostate Cancer

    Hi Michael. I would like to share my own experience, which is somewhat counter to the opinion you shared that patients should get their guidance ONLY from expert MDs who specialize in PCa. You wrote:

    Quote:
    Originally Posted by Michael F View Post
    PCa Forums are like Politicians => full of opinions and uncertainties. None of us are qualified to make any medical diagnoses. The input from expert MDs who specialize in PCa must be your only source of guidance.
    (my emphasis)

    I too believe that expert MDs specializing in prostate cancer are excellent sources of information, and I agree with your first two sentences, though I would add that good forums also provide a lot of fact and logic based sound information and leads.

    However, I am firmly convinced that we patients should not park our brains when considering "expert" professional advice, especially because of the clear fact that expert opinions often differ. Some of us behave in an authoritarian manner in making many decisions in life and are likely incapable of making independent, fact and logic, life-experience based decisions on medical matters; if we are in that group, we are best off, in my opinion, if we put our prostate cancer case in the hands of a specializing expert, if we are fortunate enough to stumble onto one at the right time. However, many of us are capable of using our heads with our hearts, and for a long time I have been convinced that a thinking prostate cancer patient who empowers himself (or herself as a supporter) with sound information is going to have a lot higher odds of success against prostate cancer.

    My impression and personal experience is that few of us, even most doctors, start out empowered in our fight against prostate cancer. Fortunately, in a life-or-death fortunate way, my brain was not parked when my primary care physician recommended against a PSA test; well, he was embarrassed when it came back 113.6, and later evidence indicated my PSA would have been nearing 1,000 within a year. Good thing I did not put my fate in his negative recommendation!

    But so often our first meaningful and often only real contact is with the urologist who recommends a biopsy, later surprisingly recommends surgery, and then performs the surgery. My first urologist, who was kind of flummoxed by my challenging case, discouraged me from going for a second opinion. He was not an expert specializing in prostate cancer, but as a novice, he seemed pretty expert to me. Fortunately, being a critical thinker, I soon parted ways with him. But without at least some empowerment, new patients like me are unlikely to find one of the real experts.

    Soon afterward, having become slightly empowered, I saw a urologist at Johns Hopkins who specialized in triage for patients unsuited for surgery like me, and later a radiation oncologist at a respected local hospital, both of whom recommended that I enter a clinical trial, with one offering a specific trial. Now I could have done that, and I am convinced that I would long ago have passed on had I done so. I soon parted ways with him. Instead, I kept absorbing information and thinking.

    Shortly after diagnosis I was getting Lupron shots from a respected local urologist, and I was reading that I needed to protect bone mineral density (BMD). Well, my urologist was unaware of that, and he kept blowing off my inquiries. He also blew off my request to add Proscar/finasteride, which was not approved to prostate cancer, to my regimen. These stances were likely typical for urologists at the time, and to an extent even now. Drugs are not in their main bag, and I'm convinced a lot of them don't know how to do a good job of managing drugs for us. To make a long story short, he agreed that I should see a medical oncologist, as that specialty is generally knowledgeable about drugs; the oncologist prescribed a BMD DEXA scan, and it revealed I had osteopenia, with a couple of vertebrae already in the osteoporosis zone. He also prescribed Proscar, at my request, based mainly on information I had learned from an expert doctor's newsletter and from another expert's Internet website, which I found thanks to a patient's wife's posting on a patient forum.

    Soon afterward I consulted a renowned medical oncologist at Johns Hopkins. At the time my decreasing PSA trend was plateauing at around .6, which was remarkable considering the starting point, but which looked inadequate to me based on what I was learning from patient Internet forums. I had been on Proscar for a couple of weeks but was not seeing an impact on my PSA. The expert oncologist advised me to throw away the rest of the Proscar pills. In some doubt about this advice, partly fueled by patient discussions on the Internet, I discussed this with my local non-prostate cancer specialist medical oncologist, and we decided to give the pills a little more time. The next test showed a 50% plunge in my PSA to .3, and that decline continued all the way, eventually, to <0.01. So I'm thinking I was wise to be empowered and not put my trust in that Johns Hopkins expert.

    About this time I discussed using an ultrasensitive PSA test, now at all popular at the time, with my local oncologist, a two-person co-founder of his practice. I had learned about the test at a conference, which I learned about on a patient forum. He felt he could not advise me because none of the dozen or so oncologists in his large practice were using any ultrasensitive test. But, working with me as a partner in my care, he agreed to try it. His staff, not used to such an order, botched the first test, using a conventional test instead. But we were soon on the right path, and ultrasensitive testing has been a key point in my care over the past two decades. It soon became standard in his practice, because of me, and indirectly because of Internet patient forums, and gradually, over many years, it came into standard practice.

    Moving from my own care, as a then strongly empowered patient, much of it due to the Internet and my own study, in 2009 I read the hot-off-the-press reports in the God-like authoritative New England Journal of Medicine that PSA screening for prostate cancer was likely of no value for the vast majority of patients. Well, I got a copies of the two papers and the editorial in the NEJM, and, using my own rather strong education in statistics and experimental design, coupled with my knowledge of prostate cancer, proceeded to rip those flimsy findings to shreds in Internet forums and anywhere else where people would listen. It was at that time that I learned that the NEJM, as deservedly respected as it is, was not perfect. Some of us layman patients have the ability, because of our own capacity to observe and apply logic, our education, or both, to properly interpret a lot of medical information in patient situations. While we cannot and should not try to give authoritative advice, we can and should arm fellow patients and loved ones with thoughts and questions so that they can find a sound professional medical team and work with that team.

    I could go on, but I think these personal examples make the case for empowerment and patient Internet forums.

    Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low at <0.01; apparently cured.. Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs.

     
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    Old 02-12-2020, 03:02 PM   #18
    Insanus
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    Re: Up-Date From Big Al PSA Retest

    Quote:
    Originally Posted by IADT3since2000 View Post
    My experience is in line with what Insanus stated if not more so. I have had very good insurance since before my diagnosis, but it is not an extremely expensive policy, but rather one covering a very large group of people.

    Not only has the insurance covered "standard of care" items, some of which have been extremely expensive, such as my radiation that cost just over $100K, but also unusual items that were not cheap. One is the drug thalidomide, which I was on three times, at a low dose (50mg) plus vitamin B6, to successfully extend the vacations I took from ADT, helping implement my strategy of gaining time for radiation technology to improve (and for me to realize that it had). Thalidomide was and still is expensive, and I was using it "off label" as it is not FDA approved for prostate cancer. Other off-label drugs I was on at times for prostate cancer included Celebrex, Proscar/finasteride, Avodart/dutasteride. At one point when there was a serious question about Celebrex safety, insurance coverage was withdrawn for that reason, and I stopped the drug. Later, when the safety issue was substantially downgraded, coverage resumed.

    Many of us are aware that in the US there are now so-called health insurance policies that offer bare bones protection that is grossly inadequate for serious health needs. That kind of policy is not what most of us prostate cancer patients are going to need!

    Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low at <0.01; apparently cured.. Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs.
    Most of the problem is with employers who buy from the cheapest company they and find and employees who donít take the time to understand their employers just screwed them with crap coverage. When the get sick is when they discover whatís up.

    Everyone whit cancer would love to go to a center of excellence, but thatís not happening when your stuck in an HMO.

     
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    Old 02-12-2020, 03:04 PM   #19
    Steve135
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    Re: Up-Date From Big Al PSA Retest

    "PCa Forums are like Politicians => full of opinions and uncertainties. None of us are qualified to make any medical diagnoses. The input from expert MDs who specialize in PCa must be your only source of guidance."

    You can tell me what I have experianced, May be in your journey you have had a better results. I have quite good insurance, I need no referals for anything but over night stays. Just did cyberknife treatments without asking 126k paid 100% zero out of pocket.
    steve d

     
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    Old 02-12-2020, 08:36 PM   #20
    Bigalcalbisque
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    Re: Up-Date From Big Al PSA Retest

    Seems that we may have gotten a tad off of the original post. Maybe this post thread is done and someone that is interested in Insurance issues can start another thread. I totally think that it would be beneficial as most of us find out about what our insurance covers when we have a problem...Just saying.
    Cowabunga from Orange County SoCal!
    __________________
    7-1-2017 Biopsy. PSA 6.3 Cancer Left Apex 3+3=6 Tumor 1.5mm 5%
    Cancer Rt Base 4+3=7 Tumor 4mm(Aggregate) 25% Perineural Invasion: Not Identified.
    9-27-2017 Robotic Surgery.
    Pathology Report 10-2-2017 Gleason 7 (4-3)11 Lymph Nodes Negative/PT3A-PN0
    Positive Rt Posterior Margin Less than or = to 3mm. Urinary Bladder Neck Invasion/Not Identified. Seminal Vesicle Invasion/Not Identified. Tumor weight=48.6 Grams
    EPE Presnt Focal Right Posterior
    7 PSA tests every 3 months less than or = to .02
    PSA test 9-27-2019 .02
    PSA test 1-23-2020 .07

     
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    Old 02-13-2020, 08:08 AM   #21
    Michael F
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    Re: Up-Date From Big Al PSA Retest

    Quote:
    Originally Posted by IADT3since2000 View Post
    Patient Empowerment and Patient Forums for Prostate Cancer

    Hi Michael. I would like to share my own experience, which is somewhat counter to the opinion you shared that patients should get their guidance ONLY from expert MDs who specialize in PCa. ......

    I could go on, but I think these personal examples make the case for empowerment and patient Internet forums.

    Jim
    [/SIZE]
    Very impressive Jim. Well spoken and well taken. I should have made it more clear that I was specifically addressing the "you have recurrence" claim made by "Another" Forum Brother earlier in the Thread (Post #5).

    I went back to Post #13 and changed the word "only" to "best!"

    I don't want to digress further from the OP's topic. I agree with you 100% and have always strongly advised that each of us become our own #1 Advocate by learning everything about our disease. This includes questioning the expert MDs opinions. History proves that "The Experts" aren't always right. I'll respond in a different post / setting later.

    MF
    __________________
    PSA: Oct '09 = 1.91, Oct '11 = 2.79, Dec '11 = 2.98 (PSA, Free =13%)
    Jan '12: Biopsy: 1/12 = G7 (3+4) & 5/12 = G6
    March '12: Robotic RP: Left: PM + EPE => MD excised additional adjacent tissues
    Pathology: Gleason (3+4) pT3a pNO pMX pRO c tertiary pattern 5 / Prostate Size = 32 grams / Tumor = Bilateral: 20% / PNI: present
    uPSA Range: 0.017 - 0.032 at 94 Months Post Op: Mean = 0.023 (n = 23)
    LabCorp: Ultrasensitive PSA: Roche ECLIA
    Continence = Very Good (≥ 99%) ED = present

     
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    Old 02-13-2020, 08:47 AM   #22
    Michael F
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    Re: Up-Date From Big Al PSA Retest

    Quote:
    Originally Posted by Bigalcalbisque View Post
    Thank you everybody, good info! I never even thought about insurance!!
    My surgery only cost me $2,800, My insurance plan is through Medi-Care and $2,800 is the most that I have out of pocket expenses in a calendar year so it was money well spent. I dont have plan B as to me it was not cost effective.
    Thanks, Al
    Al: Apologies for digressing from your original PSA issue. But I have a Medicare question:

    Is your "Medi-Care" insurance a private health insurer or is it Medicare = the Federal Health Insurance Program for people who are 65 or older?

    re "plan B:" Do you mean Medicare Part B or are you referring to a Medicare Supplemental Plan B?

    FYI: If it is the U.S. Government Medicare, then you must be paying the Part B premium ($144.60) monthly. After age 65, you must have Medicare Part B coverage except if you have health insurance coverage through your company or under your spouses' health insurance.

    Good luck with your next PSAs!

    MF

     
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    Old 02-13-2020, 10:20 AM   #23
    Prostatefree
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    Re: Up-Date From Big Al PSA Retest

    Part A (hospital insurance) is paid by the government.

    Part B (medical insurance) and the supplemental to cover the deductibles and copays cost me about $360/mo. No deductibles. The best healthcare plan I ever had.

    Before Medicare I had a good private policy and it was very expensive. I had a $5,500 deductible to reduce premiums and save money thinking I only needed 3 years to Medicare and I never had a major health issue. Guess what? A major medical need each of the three years using my full deductible each time.

     
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