It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Cancer: Prostate Message Board

  • New to This

  • Post New Thread   Reply Reply
    Thread Tools Search this Thread
    Old 08-23-2020, 11:52 AM   #16
    JWPMP
    Senior Member
     
    Join Date: Jul 2020
    Location: Oakdale CA
    Posts: 249
    JWPMP HB User
    Re: New to This

    Quote:
    Originally Posted by DjinTonic View Post
    For the benefit of newbies reading the Forum posts, I have to point out that someone 64 years, obviously under medical care for a chronic condition, should have had his first PSA test well before the age of 64. PSA screening is not something you should keep to yourself, but rather discuss and calmly encourage with friends and family members. It's just another blood test to add on to your annual physical. Not all prostate cancer needs to be treated, and no one will force you treat. "Only" about 15-20% of prostate cancer is of the more serious high-grade variety, but PSA screening helps catch that early.
    ________________________________

    While only a prostate biopsy can diagnose prostate cancer, I would point out the phrase used for your husband was "probable carcinoma" and your should be prepared. Here are the major events coming up, as I see them:

    An MRI can identify suspicious areas that may be PCa lesions and, if it is an mpMRI (multiparametric MRI), the radiologist will grade each suspicious area on a 1-5 PRIADS scale, where PIRADS 1-2 are probably not malignant, 3 is an intermediate gray area, and 4-5 are suspicious for being high-grade lesions.

    The MRI can also give some indication as to whether the cancer appears to have grown out from the prostate locally, for example, piercing the prostate capsule or growing into the seminal vesicle(s). Enlarged lymph nodes may indicate metastases.

    Given your husband's PSA and DRE exam, your doc will want a prostate biopsy even in the event that the MRI is very favorable.

    If PCa is confirmed by the biopsy, the next step may be further imaging, such as CT scans and (usually only for the higher Gleason Grades) a bone scan.

    There two major pieces of information a PCa workup provides:

    (1) The Gleason Grade. Cancer is graded on the Gleason scale in a biopsy. The Gleason Grades for cancer go from 6 to 10, where 6 is the "best" to have. While each lesion identified is graded separately, the biopsy grade is that of the highest (worst) lesion identified, because that goes a long way in determining whether treatment is needed.

    (2) Your husband's entire workup (history, PSA, biopsy, all imaging, etc.) will let your doc form an opinion as to the cancer's location, i.e., whether it (a) is currently confined to the prostate; (b) has grown locally out from the prostate, e.g. through the prostate capsule and/or into the seminal vesicle(s); (c) has locally invaded other organs, e.g., the bladder or bowel; (d) has metastasized to local (pelvic) lymph nodes; (e) has metastasized to other organs (bone, liver, lungs) and/or distant nodes. So you see this runs the gamut in seriousness.

    Note that a pre-treatment PSA of >20 is usually considered an added risk factor in one's post-treatment prognosis.

    Depending on the above, you can consult with surgeons and radiation oncologists to help you decide on your treatment. Depending on the outcome of the above workup, you may be told that either surgery or radiation has a slight advantage, but that does not mean you must choose that treatment -- treatment is a personal decision, and two men with identical situations can choose different treatments for different reasons. (In some cases a man may be advised why either surgery or radiation is not a good choice.)

    As difficult as it now seems, if you get a diagnosis of prostate cancer, stay calm! You will have time to digest the findings in the cancer workup, read up on treatments and treatment outcomes, and make a decision that works best for you.

    Make sure you both go to all visits, go with any questions prepared and written, and take notes. If you trust your memory, it will fail you -- when you and your doc start discussing a topic, you'll need to rely on your notes to get back on track so you cover everything you wanted.

    As you get answers to your initial questions, you'll have plenty of others! Please keep us posted, and all the best!

    Djin
    What a tremendously helpful summary, thank you
    Jim has already decided he has cancer and very much is fearful it has spread all over, despite no testing yet.
    Once his primary care physician walked in the room and said you have cancer, Jim's latched on. I absolutely know the likelihood is greater than not, but i still feel "diagnosis" is important.
    I also wondered (after the fact) why PSA testing has never been suggested by his doctors. Jim is not an "annual checkup" guy, but obviously has had bloodwork several times in the last 10 years, the prior latest being 18 months ago and no PSA was done or suggested.
    I don't know that I was even familiar with that before this happened.
    I know ignorance is no excuse and we are responsible for our health, but a suggestion from a doctor would have been nice.
    The input from this forum has been incredible and appreciated beyond words.
    Will definitely keep you all updated.
    Hoping we are able to get the MRI before the biopsy (Aug 27th), we are holding our breath for the phone call.
    So far UCSF has been much more communicative than Sutter Gould Modesto, to say the least.
    Thank you again

    Paula & Jim

     
    Reply With Quote
    Sponsors Lightbulb
       
    Old 08-23-2020, 12:03 PM   #17
    JWPMP
    Senior Member
     
    Join Date: Jul 2020
    Location: Oakdale CA
    Posts: 249
    JWPMP HB User
    Re: New to This

    Quote:
    Originally Posted by OldTiredSailor View Post
    robot assisted surgery to remove prostate in late August 2018 when I was just past 71st birthday.

    3-months later I was back to long hard bicycle riding on both the street and in nasty dirt. I've been a very serious rider for 50-years and by 6-months post surgery I could feel no impact of any kind from the surgery while riding many hours at a time.

    5-months after the surgery I was back to sailing my 40-foot sailboat by myself in serious winds. Again, I felt no negative impact from my surgery.

    10-months after the surgery, as my 72nd birthday loomed on the calendar - I was playing very serious pickleball 3-hours a day, 6-days a week with no thoughts about the long past surgery.

    Today is the 2nd-annual anniversary of my prostatectomy and my life goes on as if it never happened.

    You will have a lot to learn over the next few months but the outcomes are typically quite positive and you are being seen at one of the best prostate cancer facilities in the world.

    Feel free to ask us what ever comes to mind. This is a huge learning experience and there is a vast amount of experience here that will gladly answer all your questions.
    That is so encouraging!! Amazing actually
    I am so happy to have positive information to share with my husband (he's not an internet or even a computer guy, won't even look at a smartphone, I have to relay everything Lol)
    I am so glad to have found this forum! I'm sure I'll be pestering everyone as we progress.
    Thank you again

     
    Reply With Quote
    Old 08-23-2020, 04:09 PM   #18
    DjinTonic
    Veteran
    (male)
     
    Join Date: Dec 2019
    Location: NC
    Posts: 452
    DjinTonic HB UserDjinTonic HB UserDjinTonic HB UserDjinTonic HB UserDjinTonic HB UserDjinTonic HB UserDjinTonic HB UserDjinTonic HB UserDjinTonic HB UserDjinTonic HB UserDjinTonic HB User
    Re: New to This

    Paula & Jim,

    To answer your question, yes, at some point a physician ordering tests should check the patient's history for the date of the last PSA test, just as docs ask about tetanus boosters and flu and other vaccines. (By the way, if you husband doesn't have a baseline electrocardiogram on file, that's something else to put on your To Do list.)

    For most of us here (and most men everywhere), a diagnosis of PCa comes as a shock. We think (1) But aren't I too young for that disease? and (2) How is that possible -- I feel perfectly fine! So it really does come out of the blue for the majority of men.

    And then we see before us a daunting gulf between (1) I know nothing about PCa and (2) I'd better learn everything there is to know.

    Fortunately, the task is quite a bit simpler. As you and your husband learn more about your husband's status -- the nature and extent of his prostate cancer -- you can focus on just the knowledge that is useful to your situation. While I did mention above the likely next steps in his workup, you don't have to worry about what to do in every possible scenario -- that's the doctor's job, not yours!

    One thing we prostate guys and partners learn is that you really do need patience. Our prostate cancer has usually been developing for quite some time and the situation isn't going to change overnight.

    For now do only as much reading on the subject as you are comfortable with. Certain concepts that may seem difficult at first will become very clear, because they will be repeated many times and presented in different ways. If a topic seems hard to understand, just skim it, and make a mental note of the topic name -- you can always come back to it or read up on it if and when it becomes important for your husband's status or treatment decision.

    The emphasis today is on joint decision-making between the patient and doctor. Your husband is very lucky to have you by his side! Take heart: We all make it through treatment, and you will too!

    Djin
    __________________
    69 yr at Dx, BPH x 20 yr, 9 (!) neg. Bx, PCA3-
    7-05-13 TURP for BPH (90→30 g) path neg. for PCa, 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
    Nodule negative for PCa. Bone scan, CTs, X-rays: neg.
    8-7-17 Open RP, negative frozen sections, Duke Regional Hosp.
    SM EPE BNI LVI SVI LNI(5L, 11R): negative, PNI+, nerves spared
    pT2c pN0 pMX, G9 (4+5) 5% of prostate (4.5x5x4 cm, 64 g)
    Dry; ED OK with sildenafil
    Decipher 0.37 (Low Risk), uPSA: 0.010 (3 mo.)...0.020 (3 yr. 7 mo.)

     
    Reply With Quote
    Old 08-23-2020, 05:22 PM   #19
    JWPMP
    Senior Member
     
    Join Date: Jul 2020
    Location: Oakdale CA
    Posts: 249
    JWPMP HB User
    Re: New to This

    Quote:
    Originally Posted by DjinTonic View Post
    Paula & Jim,

    To answer your question, yes, at some point a physician ordering tests should check the patient's history for the date of the last PSA test, just as docs ask about tetanus boosters and flu and other vaccines. (By the way, if you husband doesn't have a baseline electrocardiogram on file, that's something else to put on your To Do list.)

    For most of us here (and most men everywhere), a diagnosis of PCa comes as a shock. We think (1) But aren't I too young for that disease? and (2) How is that possible -- I feel perfectly fine! So it really does come out of the blue for the majority of men.

    And then we see before us a daunting gulf between (1) I know nothing about PCa and (2) I'd better learn everything there is to know.

    Fortunately, the task is quite a bit simpler. As you and your husband learn more about your husband's status -- the nature and extent of his prostate cancer -- you can focus on just the knowledge that is useful to your situation. While I did mention above the likely next steps in his workup, you don't have to worry about what to do in every possible scenario -- that's the doctor's job, not yours!

    One thing we prostate guys and partners learn is that you really do need patience. Our prostate cancer has usually been developing for quite some time and the situation isn't going to change overnight.

    For now do only as much reading on the subject as you are comfortable with. Certain concepts that may seem difficult at first will become very clear, because they will be repeated many times and presented in different ways. If a topic seems hard to understand, just skim it, and make a mental note of the topic name -- you can always come back to it or read up on it if and when it becomes important for your husband's status or treatment decision.

    The emphasis today is on joint decision-making between the patient and doctor. Your husband is very lucky to have you by his side! Take heart: We all make it through treatment, and you will too!

    Djin
    I'm in tears, thank you
    So insightful (yes those exact thoughts at being told)
    Such wise kind words about starting this journey.
    So thankful to have all this in writing that I can continually review.
    And such kind encouragement about getting through treatment. Right now just making it through the biopsy feels daunting...
    Much thanks again, truly
    Paula & Jim
    Jim

     
    Reply With Quote
    Old 08-23-2020, 07:26 PM   #20
    ASAdvocate
    Senior Member
    (male)
     
    Join Date: Dec 2019
    Location: Alexandria, VA USA
    Posts: 198
    ASAdvocate HB UserASAdvocate HB UserASAdvocate HB UserASAdvocate HB UserASAdvocate HB UserASAdvocate HB UserASAdvocate HB UserASAdvocate HB UserASAdvocate HB User
    Re: New to This

    Over the years, on various prostate cancer support forums, I have read posts from men who were diagnosed with PSA’s of 3,000, 5,000, 10,000, and even 15,000.

    And, they were all posting ten or more years after diagnosis.

    Now, their lives were not a day at the beach, and they had to deal with the very strong effects of toxic treatments. But, they were around, and able to participate in discussions, and in life.

    Just trying to add some hopeful perspective.

     
    Reply With Quote
    Old 08-23-2020, 08:59 PM   #21
    JWPMP
    Senior Member
     
    Join Date: Jul 2020
    Location: Oakdale CA
    Posts: 249
    JWPMP HB User
    Re: New to This

    Quote:
    Originally Posted by ASAdvocate View Post
    Over the years, on various prostate cancer support forums, I have read posts from men who were diagnosed with PSA’s of 3,000, 5,000, 10,000, and even 15,000.

    And, they were all posting ten or more years after diagnosis.

    Now, their lives were not a day at the beach, and they had to deal with the very strong effects of toxic treatments. But, they were around, and able to participate in discussions, and in life.

    Just trying to add some hopeful perspective.
    Holy smoke! Didn't realize it was possible to go that high. But actually I have no idea of the range other than over 4 is worrisome and over 20 is big trouble
    That is fantastic to know people have survived at such numbers,
    I love that phrase "participate in life", that is our goal.
    Thank you for sharing that perspective

     
    Reply With Quote
    Old 08-25-2020, 01:50 AM   #22
    HighlanderCFH
    Member
    (male)
     
    HighlanderCFH's Avatar
     
    Join Date: Jul 2014
    Location: Highland
    Posts: 93
    HighlanderCFH has disabled reputation
    Re: New to This

    Quote:
    Originally Posted by JWPMP View Post
    Holy smoke! Didn't realize it was possible to go that high. But actually I have no idea of the range other than over 4 is worrisome and over 20 is big trouble
    That is fantastic to know people have survived at such numbers,
    I love that phrase "participate in life", that is our goal.
    Thank you for sharing that perspective

    Indeed, there are many cases where the PSA numbered into the hundreds and thousands.

    One of the keys to your husband's prognosis will be the Gleason score(s) established by the biopsy that he will probably have after the scan is done.

    If it has not already been suggested, you might consider buying another book, by Dr Pat Walsh, entitled the Guide to Surviving Prostate Cancer. The last I saw was edition 4, so be sure it is at least the 4th edition. This is considered one of the gold standard books on PC.

    We're glad you found us here. And we'll all be with both you every step of the journey.

    Good luck!
    Chuck

    Last edited by HighlanderCFH; 08-25-2020 at 01:52 AM.

     
    Reply With Quote
    Old 08-25-2020, 05:31 AM   #23
    IADT3since2000
    Senior Veteran
    (male)
     
    Join Date: Nov 2007
    Location: Annandale, VA, USA
    Posts: 2,867
    IADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB User
    Re: New to This

    Quote:
    Originally Posted by JWPMP View Post
    Holy smoke! Didn't realize it was possible to go that high. But actually I have no idea of the range other than over 4 is worrisome and over 20 is big trouble
    That is fantastic to know people have survived at such numbers,
    ...
    Indeed!

    The highest PSA I've ever heard of was 25,000 for a patient described over several years in talks at the PCRI conference series (for 2020 on September 11 and 12) by Dr. Eugene Kwon, MD, a urologist who is a prominent leader in imaging and treatment of prostate cancer at the famed Mayo Clinic in Rochester, Minnesota. Amazingly, while that young patient was in very poor shape at the time with many abdominal metastases and liver and kidney failure, bowel obstruction, etc., as of July 2018, the last date I know of that Dr. Kwon talked about him, he was disease free and on no therapy, doing well, with a PSA of less than .1. (Conference DVD set, disc 2, 2:37:38 - 2:38:09)

    Now most patients with PSAs in the thousands are not going to survive, so this is not a free pass. But it does illustrate what can be achieved with excellent case management and treatment these days. It gave hope to me when I first heard about this case, and I hope it and the other reports here will encourage you.

    ….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 and stable at <0.01; apparently cured. (Current T 99 6/5/20.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs
    .

    Last edited by IADT3since2000; 08-25-2020 at 12:15 PM. Reason: Inserted space between "young" and "patient."

     
    Reply With Quote
    Old 08-25-2020, 06:42 AM   #24
    JWPMP
    Senior Member
     
    Join Date: Jul 2020
    Location: Oakdale CA
    Posts: 249
    JWPMP HB User
    Re: New to This

    Quote:
    Originally Posted by HighlanderCFH View Post
    Indeed, there are many cases where the PSA numbered into the hundreds and thousands.

    One of the keys to your husband's prognosis will be the Gleason score(s) established by the biopsy that he will probably have after the scan is done.

    If it has not already been suggested, you might consider buying another book, by Dr Pat Walsh, entitled the Guide to Surviving Prostate Cancer. The last I saw was edition 4, so be sure it is at least the 4th edition. This is considered one of the gold standard books on PC.

    We're glad you found us here. And we'll all be with both you every step of the journey.

    Good luck!
    Chuck
    I too am beyond thankful to have found this forum (and the courage to post after weeks of observing)
    I just ordered The Key to Prostate Cancer, so I will get this book ordered right away also, thank you Chuck!

     
    Reply With Quote
    Old 08-25-2020, 06:50 AM   #25
    JWPMP
    Senior Member
     
    Join Date: Jul 2020
    Location: Oakdale CA
    Posts: 249
    JWPMP HB User
    Re: New to This

    Quote:
    Originally Posted by IADT3since2000 View Post
    Indeed!

    The highest PSA I've ever heard of was 25,000 for a patient described over several years in talks at the PCRI conference series (for 2020 on September 11 and 12) by Dr. Eugene Kwon, MD, a urologist who is a prominent leader in imaging and treatment of prostate cancer at the famed Mayo Clinic in Rochester, Minnesota. Amazingly, while that youngpatient was in very poor shape at the time with many abdominal metastases and liver and kidney failure, bowel obstruction, etc., as of July 2018, the last date I know of that Dr. Kwon talked about him, he was disease free and on no therapy, doing well, with a PSA of less than .1. (Conference DVD set, disc 2, 2:37:38 - 2:38:09)

    Now most patients with PSAs in the thousands are not going to survive, so this is not a free pass. But it does illustrate what can be achieved with excellent case management and treatment these days. It gave hope to me when I first heard about this case, and I hope it and the other reports here will encourage you.

    ….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 and stable at <0.01; apparently cured. (Current T 99 6/5/20.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs
    .
    I have to say Jim it is definitely encouraging to hear of success stories of advanced stages, even if not the norm. Hope is so important and we are in need of that as we wait.

    Jim's biopsy is Thursday, but last Friday Dr Carroll wants an MRI first, but said not to cancel the biopsy yet...we didn't hear anything yesterday and the anticipation is painful. Not sure if we should call Dr Carroll's office today or wait one more day. Do not want to be an annoying patient, and certain that insurance is the holdup, however Jims supposed to start antibiotics tomorrow morning and don't want to do that if Dr Carroll is able to get it all scheduled with him...stomach in knots

    thank you again
    Paula & Jim

     
    Reply With Quote
    Old 08-25-2020, 08:38 AM   #26
    guitarhillbilly
    Senior Member
    (male)
     
    Join Date: Jan 2020
    Posts: 231
    guitarhillbilly HB Userguitarhillbilly HB Userguitarhillbilly HB User
    Re: New to This

    " Do not want to be an annoying patient, and certain that insurance is the holdup, however Jims supposed to start antibiotics tomorrow morning and don't want to do that if Dr Carroll is able to get it all scheduled with him...stomach in knots"

    You might want to call the insurance provider yourself and see if they need any more information. My experience is that the health care Monster is too big and many times there is a breakdown in communication between parties. If I had not done follow ups with my Insurance Provider and Medical Providers it would have taken me even longer to navigate thru the process.
    My Insurance also screwed up by sending a request for more info from my UR to the hospital where my procedure was going to be performed instead of sending it directly to my UR. After about 2 weeks of sitting on someones desk they finally mailed it forward to my UR and Myself. Then I find out that my UR's office placed request for my medical records to be sent to Insurance Provider and after 2 more weeks my IP had not received the records. Then I find out that the medical records are outsourced to a 3rd party provider. I had to go to the 3rd party provider IN PERSON and fill out paperwork to send my Medical Records to my IP. If I had not done this my procedure for Fiducial Markers - SpaceOAR Gel- and IMRT Radiation would have been delayed even longer.

    The Medical System is a MAZE - Must Jump Thru Hoops- and you cannot do too many follow ups to keep the ball rolling for testing and treatment.

    "The bearing that squeals the loudest gets the grease".
    __________________
    T2a / Gleason Score 8 / PSA at Diagnosis 6.9 /
    1-5 aggressive score : 4
    12 cores= 4 positive
    NBS = Negative
    Pelvic CT= Negative
    Pelvic MRI= Negative
    Age at Diagnosis= 60-65 age group
    Completed 42 IMRT Sessions
    Lupron scheduled for 2 years [Started DEC 2019]

     
    Reply With Quote
    The following user gives a hug of support to guitarhillbilly:
    IADT3since2000 (08-26-2020)
    Old 08-25-2020, 09:46 AM   #27
    JWPMP
    Senior Member
     
    Join Date: Jul 2020
    Location: Oakdale CA
    Posts: 249
    JWPMP HB User
    Re: New to This

    Quote:
    Originally Posted by guitarhillbilly View Post
    " Do not want to be an annoying patient, and certain that insurance is the holdup, however Jims supposed to start antibiotics tomorrow morning and don't want to do that if Dr Carroll is able to get it all scheduled with him...stomach in knots"

    You might want to call the insurance provider yourself and see if they need any more information. My experience is that the health care Monster is too big and many times there is a breakdown in communication between parties. If I had not done follow ups with my Insurance Provider and Medical Providers it would have taken me even longer to navigate thru the process.
    My Insurance also screwed up by sending a request for more info from my UR to the hospital where my procedure was going to be performed instead of sending it directly to my UR. After about 2 weeks of sitting on someones desk they finally mailed it forward to my UR and Myself. Then I find out that my UR's office placed request for my medical records to be sent to Insurance Provider and after 2 more weeks my IP had not received the records. Then I find out that the medical records are outsourced to a 3rd party provider. I had to go to the 3rd party provider IN PERSON and fill out paperwork to send my Medical Records to my IP. If I had not done this my procedure for Fiducial Markers - SpaceOAR Gel- and IMRT Radiation would have been delayed even longer.

    The Medical System is a MAZE - Must Jump Thru Hoops- and you cannot do too many follow ups to keep the ball rolling for testing and treatment.

    "The bearing that squeals the loudest gets the grease".
    Thank you much !!!
    Great plan.

     
    Reply With Quote
    Old 08-25-2020, 12:19 PM   #28
    IADT3since2000
    Senior Veteran
    (male)
     
    Join Date: Nov 2007
    Location: Annandale, VA, USA
    Posts: 2,867
    IADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB User
    Re: New to This

    guitarhillbilly,

    Thanks for posting about your records screw up. I'm going to show this to my wife who has a great doctor with a lousy office staff. After seeing this, she won't feel like the medical universe has it out for just her.

    Jim

    PS Added 8/26 - She empathized with your post, saying it was even worse than what she had experienced. Thanks again!

    Last edited by IADT3since2000; 08-26-2020 at 01:06 PM. Reason: Added PS.

     
    Reply With Quote
    The Following User Says Thank You to IADT3since2000 For This Useful Post:
    guitarhillbilly (08-26-2020)
    Old 08-25-2020, 12:48 PM   #29
    JWPMP
    Senior Member
     
    Join Date: Jul 2020
    Location: Oakdale CA
    Posts: 249
    JWPMP HB User
    Re: New to This

    Quote:
    Originally Posted by IADT3since2000 View Post
    guitarhillbilly,

    Thanks for posting about your records screw up. I'm going to show this to my wife who has a great doctor with a lousy office staff. After seeing this, she won't feel like the medical universe has it out for just her.

    Jim
    Lol Jim, my Jim thinks the same thing..."its personal "

    So I called to ask if we should cancel the biopsy as no MRI had been scheduled yet.
    Was told there was no MRI with the technology for this particular scan in our area or surrounds. So no MRI had been ordered yet.
    We wouldn't have known that if I hadn't called. I'm a bit concerned at the lack of communication, is that par for the course?

    So the nurse is having us cancel the biopsy in Modesto Thursday and schedule an MRI at UCSF.
    Then after that we'll get a biopsy with Dr Carroll scheduled. Sounds like another month of waiting.
    Jim feels better to just start dealing with the one Dr now, but the additional wait feels worrisome to me.

    thank you for letting me ramble on

    Last edited by JWPMP; 08-25-2020 at 12:52 PM. Reason: correct an incorrect word

     
    Reply With Quote
    Old 08-25-2020, 04:14 PM   #30
    JWPMP
    Senior Member
     
    Join Date: Jul 2020
    Location: Oakdale CA
    Posts: 249
    JWPMP HB User
    Re: New to This

    Quote:
    Originally Posted by guitarhillbilly View Post
    " Do not want to be an annoying patient, and certain that insurance is the holdup, however Jims supposed to start antibiotics tomorrow morning and don't want to do that if Dr Carroll is able to get it all scheduled with him...stomach in knots"

    You might want to call the insurance provider yourself and see if they need any more information. My experience is that the health care Monster is too big and many times there is a breakdown in communication between parties. If I had not done follow ups with my Insurance Provider and Medical Providers it would have taken me even longer to navigate thru the process.
    My Insurance also screwed up by sending a request for more info from my UR to the hospital where my procedure was going to be performed instead of sending it directly to my UR. After about 2 weeks of sitting on someones desk they finally mailed it forward to my UR and Myself. Then I find out that my UR's office placed request for my medical records to be sent to Insurance Provider and after 2 more weeks my IP had not received the records. Then I find out that the medical records are outsourced to a 3rd party provider. I had to go to the 3rd party provider IN PERSON and fill out paperwork to send my Medical Records to my IP. If I had not done this my procedure for Fiducial Markers - SpaceOAR Gel- and IMRT Radiation would have been delayed even longer.

    The Medical System is a MAZE - Must Jump Thru Hoops- and you cannot do too many follow ups to keep the ball rolling for testing and treatment.

    "The bearing that squeals the loudest gets the grease".
    guitarhillbilly
    as I read your post for the third time I'm amazed you were able to follow that thread down the rabbit hole especially under duress. I helped a friend with her medical billing business for a couple years. never have dealt with anything so convoluted, messy, confusing, and designed to make things as difficult as possible. And her client was a large cancer center, the last people that need the stress.
    Kudos for having the wherewithal to straighten it out on your own
    Thanks for sharing what it takes

    Paula & Jim

     
    Reply With Quote
    The following user gives a hug of support to JWPMP:
    IADT3since2000 (08-26-2020)
    Reply Reply




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 01:26 AM.





    © 2021 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!