How do you guide your oncologist to prescribing the tests you know you need?

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dayhooter
dayhooter Member Posts: 1
edited March 2014 in Colorectal Cancer #1
I had colon cancer 15 months ago - was successfully operated on to remove the tumor and a bit of the colon. My oncologist at the time was very optimistic and did not think it was necessary for any chemotherapy. Since then my CEA level has been rising slightly and my last PET and CT scans were in early January (and did not show anything). I also had a colonoscopy at the end of March and the results were 'clean'.

Now my CEA level is extremely high and rising...in a little over two weeks it rose 6 more points over a 2-1/2 point rise in the last three months.

I recently moved here to Texas and my new oncologist is suggesting just a PET scan - how do I approach him to say that I would like the PET and CT scans done in conjunction with one another so that everything is done at the same time? Since they both show slightly different things (and we know we're facing 'something' growing)...wouldn't this combo pinpoint where, how big, etc. versus just knowing that there's a concentration of growing cancer cells in a general area of the body?

Help! I'll be talking to him again in the next couple of days - I want to be tactful and respectful but this does have a profound affect on what happens to me in the upcoming weeks and months.

I don't know if it makes any difference, but I'm a 64 year old female.

Thank you to anyone and everyone for whatever insight you may give me.

Pat

Comments

  • Patteee
    Patteee Member Posts: 945
    #2
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    Hi
    How high is your CEA?
    Hi
    How high is your CEA? You were staged at what level 15 months ago?

    I don't know for sure exactly what to tell you, hoping others will chime in. But my understanding is the PET is done after an evaluated CEA. I don't think both are called for?
  • abrub
    abrub Member Posts: 2,174 Member
    #3
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    Just ask him
    Ask him directly whether a PET/CT option is reasonable, and if he says no, find out why.

    Hopefully, you've researched your new oncologist, and can have trust and respect in his judgment calls. If not, why did you choose him?

    I'm always straightforward with my drs when I have questions why or why not something is done.

    (I'm female, 58)

    Alice
  • ktlcs
    ktlcs Member Posts: 358
    #4
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    Ask
    You have the right to ask and the right to an explanation of why something is or isn't being done! this is your life, not the Dr.'s. Ask, ask, ask and if you son't like the answer ask again

    K
  • John23
    John23 Member Posts: 2,122 Member
    #5
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    Pat -


    Re:
    "I want to be tactful and respectful but this does have a profound
    affect on what happens to me in the upcoming weeks and months."

    You are entitled to a second, third, or however many other opinions
    you desire. Any good physician welcomes second opinions, since
    they get information about new procedures, etc, that way.

    Get all the facts from the one you have, and get to different one,
    one that isn't in the same association as your present one.

    Planning your life based on one individual's opinion, isn't a good idea.

    Physicians are human, and all humans make mistrakes.


    Good health!


    John
  • Nana b
    Nana b Member Posts: 3,030 Member
    #6
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    John23 said:

    Pat -


    Re:
    "I want to be tactful and respectful but this does have a profound
    affect on what happens to me in the upcoming weeks and months."

    You are entitled to a second, third, or however many other opinions
    you desire. Any good physician welcomes second opinions, since
    they get information about new procedures, etc, that way.

    Get all the facts from the one you have, and get to different one,
    one that isn't in the same association as your present one.

    Planning your life based on one individual's opinion, isn't a good idea.

    Physicians are human, and all humans make mistrakes.


    Good health!


    John

    ??
    No Mop up Chemo? Did it not get in your lymph nodes?
  • geotina
    geotina Member Posts: 2,111 Member
    #7
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    Pat:
    What stage is your cancer? How high is your CEA and exactly how much has it gone up? For some, CEA is not a good indicator for some it is an excellent indicator. For my hubby, it is an excellent indicator.

    The board just needs a little more info.

    Doctors do things differently. My hubby is Stage IV and has never had a PET, only CT's. Since he is Stage IV, doc said that CT showed him everything he needed to know. Several on here have only had CT's for various reasons.

    Tina
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #8
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    geotina said:

    Pat:
    What stage is your cancer? How high is your CEA and exactly how much has it gone up? For some, CEA is not a good indicator for some it is an excellent indicator. For my hubby, it is an excellent indicator.

    The board just needs a little more info.

    Doctors do things differently. My hubby is Stage IV and has never had a PET, only CT's. Since he is Stage IV, doc said that CT showed him everything he needed to know. Several on here have only had CT's for various reasons.

    Tina

    My Onc.......
    decided that an elevated CEA does indeed need a PET scan to see if there or what there is that is upsetting the apple cart....Am I wrong in my thinking that CAT scans see mostly masses and that PET scans show more miniscule cancers lingering...My CEA elevated from a 2 to a 9.7 then to a 10.2 and my PET scan is taking place tomorrow at noon..........

    Your ONC as well as other caregivers do work for you but for the most part I am entrusting my onc to make all the decisions ..I do trust him, I have to. If I didn't I wouldn't be there....
  • Left Coaster
    Left Coaster Member Posts: 25
    #9
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    Buzzard said:

    My Onc.......
    decided that an elevated CEA does indeed need a PET scan to see if there or what there is that is upsetting the apple cart....Am I wrong in my thinking that CAT scans see mostly masses and that PET scans show more miniscule cancers lingering...My CEA elevated from a 2 to a 9.7 then to a 10.2 and my PET scan is taking place tomorrow at noon..........

    Your ONC as well as other caregivers do work for you but for the most part I am entrusting my onc to make all the decisions ..I do trust him, I have to. If I didn't I wouldn't be there....

    Buzz got it pretty well right on CT vs PET
    When my oncologist needs to re-assess my cancer she orders a PET/CT scan. Like others have said already, ask questions and be sure you understand why the Dr. is ordering a particular test over a similar one. I tend to write down my questions before hand. When you find a good Dr. they will address all those questions on the paper.

    Here is a little tid bit of different imaging technologies.

    Positron Emission Tomography (PET) scans measure emissions from positron-emitting molecules. Because many useful, common elements have positron emitting forms (carbon, nitrogen, and oxygen), valuable functional information can be obtained. This is the main difference between the CT and MRI scans. The PET shows molecular function and activity not structure, and therefore can often differentiate between normal and abnormal (cancerous / tumor) or live versus dead tissue. Like SPECT (single photon emission tomography), PET also can produce three dimensional images, and is usually used to compliment rather than replace the information obtained from CT or MRI scans.

    Hope this helps!
  • taraHK
    taraHK Member Posts: 1,952 Member
    #10
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    combined PET/CT
    My PETs are always combined PET/CT. Perhaps you could first ask if this will be the case for you. If not, ask if he would consider doing CT as well -- and if not, why not. Your doc shd be able to provide an explanation which you are comfortable with.

    Meanwhile, sending all best wishes to you, for the best possible results

    Tara

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