Scan too soon or not?

Tbuck1971
Tbuck1971 Member Posts: 50
edited January 2016 in Kidney Cancer #1

Hope this finds you all well!

 

In August I changed medicines and was scanned in November where I was told that the medicine seems to be working and that some if not all of my tumors were shrinking.  After I got that wonderfully glorious news, I was told by my Doctor that I had too many scans in 2015 and need to space them out a bit more.  He advised that I would come back in during January and have blood work and some other labs done, then if things looked to be maintaining or no obvious signs that I would go back in for my next scan in March.  Got a call last week and again today which the DOCTOR wants to scan me now so he can interpret on my "LAB" visit in January.  This makes NO sense to me?  Why would he make this change without advising me earlier?  What has changed that I do not know about?  Why is it all of a sudden ok to scan "earlier" but when I spoke to him he was concerned I had too many scans?  Not only that the "assistant" or "nurse practitioner" will not allow me to speak with the Doctor because "it's her job to tell me what he says". 

 

Am I missing something here?  I have not been very happy with UNC Hospitals for a variety of reasons and things that they have done to me, the treatment seems fine, but it seems to me that they really have no clue and I am beginning to lose faith in their services. 

 

Any advice?

 

Thank You and may God Bless You ALL!

 

Tom

Comments

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    #2
    Well I am sorry you are going

    Well I am sorry you are going through such confusion and contradiction.

    Yes,  the Nurse is usually the spokesperson for typical responses, but

    if you need to speak to your doctor tell them, you cannot have another scan

    until you discuss this with your doctor. Now my guess is that they will tell you

    to come IN to  discuss it, still..  its YOUR life, YOUR  health,  YOUR treatment.


    Do you have a good relationship with your MD? Then again, leave yet another

    message that you want to speak to the doctor BEFORE you have this scan.

    Let u sknow how it goes and know  we're here for you.

    Warmly, Jan

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    #3
    Jan4you said:

    Well I am sorry you are going

    Well I am sorry you are going through such confusion and contradiction.

    Yes,  the Nurse is usually the spokesperson for typical responses, but

    if you need to speak to your doctor tell them, you cannot have another scan

    until you discuss this with your doctor. Now my guess is that they will tell you

    to come IN to  discuss it, still..  its YOUR life, YOUR  health,  YOUR treatment.


    Do you have a good relationship with your MD? Then again, leave yet another

    message that you want to speak to the doctor BEFORE you have this scan.

    Let u sknow how it goes and know  we're here for you.

    Warmly, Jan

    Seems bloody weird

    Wanting a scan, not wanting a scan. You should ahave a word wth with the Dr if just for clarificatuion. It my be because Doris had to vieis uncle Boris with his heameorids in Vncouver, but you have the right. But you might want to buy Boris a soft cushion, yo cold always keep it they heal over the winter

  • hardo718
    hardo718 Member Posts: 853 Member
    #4
    Try again

    I have tried to put myself in your shoes.  I don't know how many scans you had in 2015 but I would definitely attempt to make contact with the doctor again.  Simply explain to the nurse you absolutely will need to have a conversation with your doctor before any further testing because of the contradictions and if the nurse refuses again you may need to speak to the ethical board.  That is completely unacceptable on the nurses part.  It also may be time to start looking for a different doctor if they truly are that negligent.

  • Srashedb
    Srashedb Member Posts: 482 Member
    #5
    Labs

    Tom:

    it is obviously not great that the PA is not letting you speak to the doctor; that being said, the scans were set for March UNLESS the labs indicated something.

    clearly, the labs showed something your doc wa to follow up.

    Good luck and stay in touch, 

    Sarah

  • APny
    APny Member Posts: 1,995 Member
    #6
    Jan4you said:

    Well I am sorry you are going

    Well I am sorry you are going through such confusion and contradiction.

    Yes,  the Nurse is usually the spokesperson for typical responses, but

    if you need to speak to your doctor tell them, you cannot have another scan

    until you discuss this with your doctor. Now my guess is that they will tell you

    to come IN to  discuss it, still..  its YOUR life, YOUR  health,  YOUR treatment.


    Do you have a good relationship with your MD? Then again, leave yet another

    message that you want to speak to the doctor BEFORE you have this scan.

    Let u sknow how it goes and know  we're here for you.

    Warmly, Jan

    If he said your scan is to be

     

    For the NP “not to allow” you to speak to your doctor when you have concerns is absurd and borders on the unethical. I would insist on speaking with him. That’s just ridiculous. Hope you get it resolved quickly and get the best scan results and lab work.

     

  • donna_lee
    donna_lee Member Posts: 1,045 Member
    #7
    Srashedb said:

    Labs

    Tom:

    it is obviously not great that the PA is not letting you speak to the doctor; that being said, the scans were set for March UNLESS the labs indicated something.

    clearly, the labs showed something your doc wa to follow up.

    Good luck and stay in touch, 

    Sarah

    What's is too many?

    Tbuck

    There is a time frame that comes into play with most Onc'sts.  After about 4 yeats of CT's every 3 months, the Onc. started alternating a CT of chest/abd/pelvis with a chest x-ray and US of abd/pelvis.  Then it was stretched to every 4 months....then 6 months.  I've had only 2 CT's in the previous 18 months, but they also have to keep an eye on my thyroid; and in 5 months, it will be a total of 10 years since I began my new life without a kidney, 1/2 a liver, a gall bladder and set of nodes.

    As I see others have encouraged you to get the Dr. to define his procedures, time lines for tests and/or treatments, I won't try to bully you into being aggressive.  But INSIST that you get answers to what is being ordered.

    Since I began this stuff, Dr. opinions and procedural orders from them may have changed.  Hang in there and have HOPE.

    Hugs, Donna

     

  • mrou50
    mrou50 Member Posts: 389 Member
    #8
    Not familiar

    I am not familiar with the scan issue but like everyone else here I agree demand to speak to your doctor make her/him take the time. They work for you and if they won't I would say it is time to find a new ONC and get out away from the one you have.

     

    Mark

  • Pandabear1011
    Pandabear1011 Member Posts: 123 Member
    #9
    Hmmmm....

    Like all the comments above...I would demand to speak to your doctor. If they refuse then it sounds like it's time to search for a new one. It certainly sucks getting the run around!!....Take care, Panda

  • NewDay
    NewDay Member Posts: 272
    #10
    Scan Frequency

    Hi Tom,

    I'll make a couple of comments.

    I know evereyone says you should demand to speak directly to the doctor, but my experience has been, regardless of specialty, I have not been allowed to speak to the doctor over the phone (unless they initiated the call).  I have not had reason to try this with my oncologist so I don't know his policy.  I know a lot of people here and on SP have really good access to their doctors, even email, but that has not been my experience.  I wonder if practices differ in different areas or the county or large hospitals.  Where are you being treated?  I would still try and, if he won't speak to you on the phone, call the office and tell them you need as appointment ASAP.

    Your doctor says that you had too many scans in 2015, but you did not mention how many you had.  Most Stage IV patients are scanned every 3 months, depending on their tumor burder and aggressiveness.  The NCCN guidelines call for every 6 to 16 weeks.  Because this can be an aggressive, deadly disease, the benefits of tracking progression far outweigh any concern about the possiblity of developing cancer because of frequent scans.

    I always get a copy of my scan reports and lab results.  At least you would be able to see if there was anything abnormal prior to speaking with the doctor.

    That's my two cents.

    I wish you the best and hope the scans coming up are good news.

    Kathy

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    #11
    NewDay said:

    Scan Frequency

    Hi Tom,

    I'll make a couple of comments.

    I know evereyone says you should demand to speak directly to the doctor, but my experience has been, regardless of specialty, I have not been allowed to speak to the doctor over the phone (unless they initiated the call).  I have not had reason to try this with my oncologist so I don't know his policy.  I know a lot of people here and on SP have really good access to their doctors, even email, but that has not been my experience.  I wonder if practices differ in different areas or the county or large hospitals.  Where are you being treated?  I would still try and, if he won't speak to you on the phone, call the office and tell them you need as appointment ASAP.

    Your doctor says that you had too many scans in 2015, but you did not mention how many you had.  Most Stage IV patients are scanned every 3 months, depending on their tumor burder and aggressiveness.  The NCCN guidelines call for every 6 to 16 weeks.  Because this can be an aggressive, deadly disease, the benefits of tracking progression far outweigh any concern about the possiblity of developing cancer because of frequent scans.

    I always get a copy of my scan reports and lab results.  At least you would be able to see if there was anything abnormal prior to speaking with the doctor.

    That's my two cents.

    I wish you the best and hope the scans coming up are good news.

    Kathy

    Who?

    Is making the decision? Not a scan goes by without my insurance ptotest the scan, 'aving a Barney with me doc before giving in

  • cheatinlil
    cheatinlil Member Posts: 197
    #12
    Hi Tom,

    It is so good to

    Hi Tom,

    It is so good to hear from you!

    Too many scans?  Is the dr’s first language English?  I ask because when you get good reports, they push the scans out more.  More frequent scans can be he is concerned or just as a precaution.  We have been told to come back in 3 months, but after explaining my husbands symptoms they pushed it up to 10 days once.  It was scary but scans came back good so no harm done.  As far as getting past the assistant to the dr.  you can call after hours and have him paged for an emergency.  I did that once when I was frustrated.  I wouldn’t abuse it but if I feel like I’m not being heard or I’m getting the run around I will do it.  They asked what my emergency is and I just listed all his regular symptoms and diagnosis:  stage 4 kidney cancer high blood pressure shortness of breath. Etc.  Yes it is the “assistant" or "nurse practitioner" job to tell you what he says.  BUT my experience has been sometimes the info gets lost in translation like the game telephone when you tell one person and they tell someone else and when it gets to the end the story is different.   We have to be responsible for getting through to them.  I have called and left messages or sent emails that didn’t get returned and I send a follow up or 2 until I do get through.  It is in my best interest to be persistent, not theirs.  To a lot of them, we are just a number.  Sad but true. 

    It couldn’t hurt to get a second opinion too.  I get losing faith in them.  You have to realize they are all guessing and using their best judgment.  They really don’t know what to do. A dr’s judgment is better than the assistants though.     

    I’m sorry it gets so frustrating though.  I only say this because I know you and I are people of faith but pray for wisdom for the drs and assistants.  Our faith is in God, pray that He direct them.  Its between us and God and “they” are just a tool God is using.  Keep posting, you are not alone, we are all going through the same thing, sad but true!  and good luck!

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