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Thread: Worried about a friend with prostate cancer possibly being overtreated / scammed

  1. #1
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    Worried about a friend with prostate cancer possibly being overtreated / scammed

    I have a friend who was diagnosed with prostate cancer about 4 years ago. Since then, they've had him on random chemo therapy treatments throughout ALL those 4 years. They also have him loaded up on pain pills, finasteride, muscle relaxers and some very expensive pill that normally costs thousands a month, but due to him qualifying for some program (coordinated by the doctor) he pays very little for it. Over the years, he's lost a ton of weight and broke his hip after falling over about 6 months ago. The hip break has crippled him and he really started to go downhill after that. He looks like a shell of what he used to be and just seems to be getting worse as time goes on. He's sickly skinny, has lost most of his hair, has no appetite and can barely walk. I believe these are side effects of all his treatments and not related to the cancer itself. When he started treatment, he looked like a normal person.

    My question is simply this: Is it possible he's getting scammed by his doctor? Why would they have him on chemo therapy for so long (years). if he's taking this magic pill why is his treatment so debilitating and so lengthy? To my knowledge, the cancer hasn't spread. I try to ask my friend questions but he shuts me down immediately and refuses to talk about it. I'll ask "how many more chemo treatments do you have to do?" and he'll respond "until they say"; meaning until his doctor says he's finished. Is this normal for prostate cancer patients?

  2. #2
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    Something does not sound right for certain. Chemo, to my knowledge is rarely used for PC unless it is late stage. Thinking there could be a lot more to this case.
    Age 70, ( now 73 ) consistent low psa till now, dre's are very important as this got way ahead of me without them!
    PSA rise 3.8 to 4.3 ( 10/2014 )
    No family history, one of eleven siblings.
    Biopsy 11/20/14 Gleason 9 with 5+4, T2c score
    9 or 10 of 12 positive 12/04/14
    Cat scan, bone scan, m r i show confined to prostate gland
    Two weeks intensive research....HT and radiation decision made
    First HT 12/16/14 lots of side effects ( Degarelix ) (3/11 pain and bruising at injection site, sleep issues, sweats and maybe some dark thoughts)
    Second HT 1/13 no side effects ( Eligard )( much easier than the 30 day, no pain or bruising, only sweats and sleep issues )
    Cat scan and tattoos 3/6/15 Dry run 3/18 actual radiation on 3/19
    Wrapped up the radiation on 5/22 and met the Memorial Day goal!
    Second six month Eligard on 7/14/15. If follow up PSA test goes well may opt out.
    .01 PSA at 90 day follow up, opted out of h t after a year. Still undetectable after three years.

  3. #3
    Hi WT! Warm Welcome to The Forum!

    Very sorry to read about your friend. None of us are medical professionals or qualified to make judgements. Our consistent recommendation to all who require treatment for PCa is to seek out expert MDs who specialize in treating PCa.

    A few questions:

    - Do you know any of your friend's statistics such as Diagnostic Stage, Gleason Score, PSA history?

    - Did your friend undergo an initial treatment such as surgery or radiation?

    Chemotherapy is usually added to the treatment regimen when PCa is either locally advanced or advanced disease. My guess is "the expensive pill" may be one of the new generation Androgen Receptor Inhibitors.

    You can not change the course of his disease or treatment regimens. However, you can actively help him by making sure he is maintaining his nutritional status. Will he let you attend one his MD appointments? Ask his MD or RN if he should take daily nutritional supplementation such as Ensure Plus or similar product. He needs to have his pain properly managed and controlled.

    Hoping your friend achieves relief and return to normal activities. You are a truly good friend to seek help and information. Continue your kind efforts.

    MF
    PSA: Oct '09 = 1.91, Oct '11 = 2.79, Dec '11 = 2.98 (PSA, Free = 0.39ng/ml, % PSA Free = 13%)
    Referred to URO MD
    Jan '12: DRE = Positive: "Left induration"
    Jan '12: Biopsy = 6 of 12 Cores were Positive: 1 = Gleason 7 (3+4) and 5 = Gleason 6
    Referred to URO Surgeon
    March '12: Robotic RP: Left Positive Margins + EPEs. MD waited in surgery for preliminary Path Report then excised substantial left adjacent tissue(s) down to negative margins and placed 2 Ti clips for SR guidance, if needed in future.
    Pathology: Gleason (3+4) pT3a pNO pMX pRO / Prostate Size = 32 grams; Tumor = Bilateral; 20% / Perineural invasion: present
    3 month Post Op standard PSA = <0.1 ng/ml
    1st uPSA at 7 months Post Op = 0.018 ng/ml
    uPSA remains "stable" at 84 Months Post Op: Mean = 0.021 (20x uPSAs: Range 0.017 - 0.026) LabCorp: Ultrasensitive PSA: Roche ECLIA
    Continence = Very Good (≥ 99%)
    ED = present

  4. #4
    Moderator Top User HighlanderCFH's Avatar
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    Howdy,

    Is this doctor running a private practice or is he with a clinic? It's hard to believe that a doctor in a clinic would be able to manage such a hoax, but a private practice can hide just about anything.

    Can you get us the stats on his case? As others have mentioned, if we know what his PSA numbers were, his Gleason scores, how many tumors, what type of primary treatment, etc, we can give a better guess on what might be going on.

    Good luck to him in any case!
    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
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    Let's not ignore the obvious. What you are describing is your friend dying of prostate cancer. It is a long and painful way to die. Questioning his competence to manage his healthcare at this time may not be helpful. Viewing his doctors as conspiring to profit from his illness may be why he's not sharing with you. What you describe makes him incompetent and his healthcare team crooks and murders. He may not appreciate your low opinion of him disguised as concern.

    People differ in their approach to serious illness and death. He is dying and your job is to just be. Stop the questioning and apologize for what he obviously considers inappropriate concern. It's his life. He gets to say how it goes. He may not want to spend his last days explaining advanced prostate cancer to you or listening to how you are dealing with it.

    It is not uncommon for friends of those dying from cancer to perceive the chemo treatments as the ultimate cause of death. Sometimes it is, and the patients are understanding of the risks associated with last effort chemo therapy treatments. His choice. You may want to acknowledge him for his inspiring courage, strength, and will to battle his disease.

    I have a friend who is managing his prostate cancer with diet, herbs and vitamins. His wife constantly asks how I am doing in front of him putting me in an awkward position of saying I'm doing fine. His response is always to be tight lipped. I honor him in this and never question him.

    More importantly for you, how are you doing? What's your current PSA?
    Last edited by Another; 01-24-2019 at 07:05 PM.

  6. #6
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    Another,

    You make a lot of valid points and are probably right about everything you said. I just wanted to make sure the doctors have his best interests in mind. I'm not trying to make any kind of reflection on his competence, but I know people can be vulnerable when they're sick and they're judgement may be clouded as a result. From what he's told me, the doctors initially said "this is under control", "we caught it early enough" and "you're going to beat this". At first, he presented his illness as if it's no big deal and early enough to cure. Then, he broke his hip and has gone through prolonged treatments over the last several years. He has a cabinet full of pills and has had extreme weight loss. The shift from what he initially told me was a minor illness to what I've seen him go through recently was cause for my concern.

    I appreciate everyone's kind words. As to the gleason index, stage and all that stuff; I'm not sure I'll be able to find that out as he likely won't want to share it with me and I probably shouldn't ask at this point. The doctor is at a cancer care center. I'm not sure who owns it, if it's run by multiple doctors, etc. I gather it's a clinic.

    My PSA was normal last checked and I have not been diagnosed with prostate cancer.

  7. #7
    Moderator Top User HighlanderCFH's Avatar
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    What is your age, Wonzy? It's good that you checked your PSA. The best thing is to remain proactive and have that annual blood test.
    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.

  8. #8
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    HighlanderCFH, I'm 39. My friend just had blood work and was bragging to me how good everything looked at how he's expected to make a full recovery. This was about a week ago. Just today, I received a call from a hospital stating he'd been admitted. They were asking me questions and telling me that he's in a very frail state. A sheriff had found him at his house after a welfare check was requested by one of his family members. He was found dazed, confused and didn't know where he was. This is why I'm questioning his oncologist's treatment plan. Something doesn't seem right...

  9. #9
    Moderator Top User HighlanderCFH's Avatar
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    That certainly gives good reason to wonder what is going on. I pray that he will be okay.

    Please let us know what you find out.
    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.

  10. #10
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    Why are you checking your PSA at 39 years old?

 

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