Is it back?

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Brenda Bricco
Brenda Bricco Member Posts: 579 Member
in Colorectal Cancer #1
Husband went in for his blood work (routine while on Xeloda), His CEA has risen from 9.9 to 12.5. He said PA suggested bone mets, I am not sure what she would base that on, I wish I would have gone with him. This is local clinic over seeing his chemo for UW, he has appt on the 7th at UW Hospital for scan and results with His team. I know it's not time to panic but I think that is where I am headed. He was crying when he got home from appt. today. I can feel my heart breaking... any advice or thoughts?
Brenda

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  • Doc_Hawk
    Doc_Hawk Member Posts: 685
    #2
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    The PA System
    Hi Brenda,

    Just like you, I have wonder what a Physicians Assistant is making a diagnosis of bone mets based off a CEA rise. Of course the scan is a good idea, but can he also consult with an oncologist about this? What are the rest of his numbers like, especially the WBC?

    Doc
  • Brenda Bricco
    Brenda Bricco Member Posts: 579 Member
    #3
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    Doc_Hawk said:

    The PA System
    Hi Brenda,

    Just like you, I have wonder what a Physicians Assistant is making a diagnosis of bone mets based off a CEA rise. Of course the scan is a good idea, but can he also consult with an oncologist about this? What are the rest of his numbers like, especially the WBC?

    Doc

    WBC+ white blood count? I
    WBC+ white blood count? I was not there and when I ask him what the rest of the blood work looks like he says he doesn't know, that he pretty much shut down with the news of the CEA. He scans on the 7th and get results on the 8th.
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    #4
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    Brenda Bricco said:

    WBC+ white blood count? I
    WBC+ white blood count? I was not there and when I ask him what the rest of the blood work looks like he says he doesn't know, that he pretty much shut down with the news of the CEA. He scans on the 7th and get results on the 8th.

    My oncolgist orders a
    My oncolgist orders a calcium test on the side with my blood work, I was told it could be a marker for bone mets. Too bad he didn't get the print out of the blood work.
  • Brenda Bricco
    Brenda Bricco Member Posts: 579 Member
    #5
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    smokeyjoe said:

    My oncolgist orders a
    My oncolgist orders a calcium test on the side with my blood work, I was told it could be a marker for bone mets. Too bad he didn't get the print out of the blood work.

    He did say that they
    He did say that they commented that he is less anemic and his liver panel keeps improving (65% resected in Feb). I asked him if he felt like she was trying to give him bad news and he said no. He is so afraid and we don't even know what it means yet. I wish I could help him feel better, I just told him that I am here and we will take this a step at a time like we have since dx. I am wondering if she mentioned something about it sometimes resurfaces in the bones and he just ran with that idea. I think I am going to encourage him to take something to settle his mind and do that same for myself. This has been a long day.
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #6
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    Hi Brenda
    I find it "so wrong" that a PA gives out anyones CEA numbers. I can only get my CEA from my Onc. That's it, period. I don't know if that's just the policy at Sloan Kettering or not. One time (and only one time) a Dr I was seeing for pain management gave me the results of my CT scan without me asking for them and he was WRONG. I did have something to worry about. I told him the next time I saw him to NOT interpret scans for me again and I explained what happened. He got my point.

    Also, it's 2012 (I think) and in this day and age patients records should be accessible online. Find out if your husbands hospital has a Patient Portal, as they call them, and if they say "No" ask when will they have one. With everything being digitized there's no reason why he does not have access to his medical records.

    I hope that the PA made a mistake (aside from giving an opinion) and that your husband is OK.
    And do ask if there's a Patient Portal. That goes for others who read this post too...
    -phil
  • Doc_Hawk
    Doc_Hawk Member Posts: 685
    #7
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    Brenda Bricco said:

    He did say that they
    He did say that they commented that he is less anemic and his liver panel keeps improving (65% resected in Feb). I asked him if he felt like she was trying to give him bad news and he said no. He is so afraid and we don't even know what it means yet. I wish I could help him feel better, I just told him that I am here and we will take this a step at a time like we have since dx. I am wondering if she mentioned something about it sometimes resurfaces in the bones and he just ran with that idea. I think I am going to encourage him to take something to settle his mind and do that same for myself. This has been a long day.

    WBC
    Yes, WBC is white blood cell count. Anemia is related to red blood cells, so if she's concerned about that then the WBC is probably good. One thing that I started doing at the start of this year was getting print outs of the CBC and CEA blood work and track it on a spreadsheet so that I can refer to it and use the numbers to adjust my diet and vitamins. A couple of months ago, my albumin and protein levels were pretty low, so I started adding a raw egg to my morning smoothie and now the levels are right mid-range.
  • steveandnat
    steveandnat Member Posts: 886
    #8
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    odd
    Strange the pa would comment like this. The cease is up but not horrible. I hope when you meet with the onc that the interpretation will be different. Jeff
  • steveandnat
    steveandnat Member Posts: 886
    #9
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    odd
    Strange the pa would comment like this. The cease is up but not horrible. I hope when you meet with the onc that the interpretation will be different. Jeff
  • steveandnat
    steveandnat Member Posts: 886
    #10
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    odd
    Strange the pa would comment like this. The cease is up but not horrible. I hope when you meet with the onc that the interpretation will be different. Jeff
  • taraHK
    taraHK Member Posts: 1,952 Member
    #11
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    wiating
    The 7th is a long time to wait. Is it possible you or he could call the PA and request clarification. Like others, I find it impossible (not to mention inappropriate) that she could suggest bone mets on the basis of a slight rise in CEA. Yes, it's possible that he misheard/misinterpreted -- I have done that hundreds of times (which is why I always take someone with me -- I know that is not possible always -- or a notebook). It would be great if you could get this clarified asap.

    Tara
  • Doc_Hawk
    Doc_Hawk Member Posts: 685
    #12
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    taraHK said:

    wiating
    The 7th is a long time to wait. Is it possible you or he could call the PA and request clarification. Like others, I find it impossible (not to mention inappropriate) that she could suggest bone mets on the basis of a slight rise in CEA. Yes, it's possible that he misheard/misinterpreted -- I have done that hundreds of times (which is why I always take someone with me -- I know that is not possible always -- or a notebook). It would be great if you could get this clarified asap.

    Tara

    Another good ear
    Another good ear to make sure you get what the doc has to say, and I did this today when discussing liver surgery, is take a long a digital recorder. They have a USB port on them so that you can upload it to your computer in case you want to email the recording to someone else.
  • janie1
    janie1 Member Posts: 753 Member
    #13
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    Doc_Hawk said:

    Another good ear
    Another good ear to make sure you get what the doc has to say, and I did this today when discussing liver surgery, is take a long a digital recorder. They have a USB port on them so that you can upload it to your computer in case you want to email the recording to someone else.

    Brenda
    Hard to do, but please dont panic. Many people like to diagnose way too soon. It's like a "control" thing, imo.
    Let the docs in charge make the real determination. Making a statement of bone mets from a cea is......well........you know what i mean.
    Many times after liver surgery, something needs beaten down again. I, too, just feel exhausted at how this seems to go on and on. But, i see how many people get through some of the toughest stuff possible, and it keeps me in the game.
    Praying for strength for you and everyone here in the fight.
  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #14
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    I dont know the PA would
    I dont know the PA would think he has bone mets becuse of a rising CEA. Bone mets are not real common in CRC.
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #15
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    Speculative...
    Brenda

    Sounds like she is just scattershootin'.

    And unfortunately her aim hit you both in the eyes.

    The only confirmed method to determine a bone met is through a bone scan. It's like many scanners...they inject you with a radioactive dye...it has to circulate through your bloodstream for about 2 hours or so....and then they lay you on the table on your back.

    You lay still and the scanner runs all over you. It's not painful. Just put your mind somewhere else or take a short nap....the scan runs about 45 minutes I believe.

    It's easy for the mind to wander off to dark places at a time like this. Recurrence always hides in the shadows. Perhaps you could request a phone consult with either the local onc or the remote one? Or request to see about having his appointment moved up and attend that one to get the full picture?

    And of course, he's concerned - well, he's probably scared straight. The first time is hard enough - but when the next time confronts us, we already have an understanding of what it took...and we simply don't want to fathom diving those waters again.

    But, if we do - then we do it.

    Phil made a good point...alot of facilities are making test results online now...I can view bloodwork results and CT scan results as well....before I ever get to the doctor, I've already got a good idea of what's happening.

    As he said, ask about it.

    Let's gather all of the facts and then see where we're at...we'll see what the onc's plan of action is.

    Hugs!

    -Craig
  • Vickilg
    Vickilg Member Posts: 281 Member
    #16
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    janie1 said:

    Brenda
    Hard to do, but please dont panic. Many people like to diagnose way too soon. It's like a "control" thing, imo.
    Let the docs in charge make the real determination. Making a statement of bone mets from a cea is......well........you know what i mean.
    Many times after liver surgery, something needs beaten down again. I, too, just feel exhausted at how this seems to go on and on. But, i see how many people get through some of the toughest stuff possible, and it keeps me in the game.
    Praying for strength for you and everyone here in the fight.

    Get The Results
    Hi there... I am so sorry to hear that your husband is upset by something a PA would say. You need to address this with the doctor. I would call and have them email or fax you the results today. From this point on, I would ask them to print out a copy every time you go so you can have a back up.

    Big hug...
    Vicki
  • Brenda Bricco
    Brenda Bricco Member Posts: 579 Member
    #17
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    Update
    Just got the result of CEA this week and it is 12.1... down 4/10 from previous one at 12.5. Still holding out for a clean scan in the 7th, I pray that it comes back clean. Other than cancer is there anything else that could cause a rise in CEA? I know smokers tend to have a higher CEA than non smokers, he is not a smoker.
  • danker
    danker Member Posts: 1,276 Member
    #18
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    Brenda Bricco said:

    Update
    Just got the result of CEA this week and it is 12.1... down 4/10 from previous one at 12.5. Still holding out for a clean scan in the 7th, I pray that it comes back clean. Other than cancer is there anything else that could cause a rise in CEA? I know smokers tend to have a higher CEA than non smokers, he is not a smoker.

    Brenda
    Don't let your imagination run away with you. Just hope for the best and take it a day at a time. All could be well you know. Best of luck.
  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #19
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    Brenda Bricco said:

    Update
    Just got the result of CEA this week and it is 12.1... down 4/10 from previous one at 12.5. Still holding out for a clean scan in the 7th, I pray that it comes back clean. Other than cancer is there anything else that could cause a rise in CEA? I know smokers tend to have a higher CEA than non smokers, he is not a smoker.

    Sending lots of hope your way for the 7th...
    and as others have said here, WHAT THE HECK?? I really can't believe a PA would throw out a crazy comment like that. I think that seems way off base, and should be reported to whoever supervises that person. Hugs-Ann
  • Maxiecat
    Maxiecat Member Posts: 544 Member
    #20
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    As a newbie here...i have no
    As a newbie here...i have no words of wisdom to offer...but i will keep you both in my thoughts and prayers. Can you call the oncologist before the 7th to get some clarification? The 7th seems a long time to have to wait.

    Alex
  • tko683
    tko683 Member Posts: 264 Member
    #21
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    Thinking of you
    Hi Brenda,
    My oncologist said that bone mets typically do not cause a rise in tumor marker. Usually, pain is the first sign of bone mets. Rising CEA could be caused by many many things. It seems to be a worry for so many. Praying that you get good news next week. Blessings,
    Teri

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