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What questions to ask

Thanks to everyone who saw my first post!

So here's the story. My dad had his first colonoscopy screening and was told a small tumor was found, and was called a few days later and told it had abnormal cells and he would need to have a foot of colon removed. He had a CT scan with contrast and barium and was told it looked ok. His CEA was less than .5. He was told his total protein, albumin, and globulin were mildly elevated. He has a surgical consult and sigmoidoscopy on Monday. 

What questions should I write down for him to ask at that Monday appointment? I want him to ask the surgeon about getting a sample for a functional profile to be done (basically testing the cancer to see which chemo will work best), but I feel like there is a million things we should be asking, I just don't know what...

Any thoughts would be greatly appreciated 

Comments

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,203 **
    edited December 2020 #2
    Turmoil

    You might be getting a bit ahead of yourself, because if surgery is successful and the staging is good, there may be no need for chemo.  Also, is it yet clear that surgery is necessary?  There will likely be a million things to consider and worry about in the upcoming days and months.  Probably the most important thing is for you to be there for your dad, to let him know you support him, and to listen and respect his concerns and opinions.  Best of luck with all of this.

  • MandiePandie
    MandiePandie Member Posts: 83
    edited December 2020 #3

    Turmoil

    You might be getting a bit ahead of yourself, because if surgery is successful and the staging is good, there may be no need for chemo.  Also, is it yet clear that surgery is necessary?  There will likely be a million things to consider and worry about in the upcoming days and months.  Probably the most important thing is for you to be there for your dad, to let him know you support him, and to listen and respect his concerns and opinions.  Best of luck with all of this.

    You’re right

    I probably am getting ahead of my myself. I guess I feel like if I assume the worst then maybe we can be a bit proactive? Idk. From what I've read though, micrometasis seem like they happen early and I just don't want him to get an all clear for now and then be devastated with a met in a year or two...

    Also, we are getting so little info from the doctors so far anyway that I just don't want to miss the chance of asking pertinent questions. Guess I'm just grasping for control. 

  • Annabelle41415
    Annabelle41415 Member Posts: 6,712 **
    edited December 2020 #4
    Father

    It's hard to ask right now as you aren't sure what kind of follow up they want to do. Make sure that you trust your doctors though and they sound concerned with any questions that you do have.  It's good to know that it doesn't sound like their was anymore involvement in other areas.  Wishing you dad the best on Monday.  He is lucky to have you as a caregiver.  It's going to be rough for him for a while, so he will need some reassurance on your part.  Please make sure that he always has someone that will go to his appointments with him so he has another set of ears.

    Kim

  • SnapDragon2
    SnapDragon2 Member Posts: 589 **

    You’re right

    I probably am getting ahead of my myself. I guess I feel like if I assume the worst then maybe we can be a bit proactive? Idk. From what I've read though, micrometasis seem like they happen early and I just don't want him to get an all clear for now and then be devastated with a met in a year or two...

    Also, we are getting so little info from the doctors so far anyway that I just don't want to miss the chance of asking pertinent questions. Guess I'm just grasping for control. 

    Read Life Extension guide, LEF.org, to preventing mets.  There are certain things your dad can do before and after surgery to help prevent it.

    If cea is .5 its probably not a good marker for him so I would request the ca19-9 and LDH for starters before surgery.  There are several blood panels that might be important now or later that SOC usually doesn't test for but I would request them anyway just to have on file as a baseline before surgery for just in case scenarios later.

  • MandiePandie
    MandiePandie Member Posts: 83
    edited December 2020 #6

    Read Life Extension guide, LEF.org, to preventing mets.  There are certain things your dad can do before and after surgery to help prevent it.

    If cea is .5 its probably not a good marker for him so I would request the ca19-9 and LDH for starters before surgery.  There are several blood panels that might be important now or later that SOC usually doesn't test for but I would request them anyway just to have on file as a baseline before surgery for just in case scenarios later.

    CEA

    How is CEA less than .5 not good? The reference said like 0-3 was normal, and his value was < . 5?

  • SnapDragon2
    SnapDragon2 Member Posts: 589 **

    CEA

    How is CEA less than .5 not good? The reference said like 0-3 was normal, and his value was < . 5?

    The cea marker is not a good

    The cea marker is not a good value to watch for your dad since he has active cancer.  Many people find cea isn't a good indicator because it is not elevated with their cancer.

  • MandiePandie
    MandiePandie Member Posts: 83

    The cea marker is not a good

    The cea marker is not a good value to watch for your dad since he has active cancer.  Many people find cea isn't a good indicator because it is not elevated with their cancer.

    Ohhhhh

    Oh ok! Thank you for sharing that. Could it just possibly mean that his cancer is not that bad yet? Loaded question I know :P Im grasping for straws here, forgive me. I was hoping it was just an indicator that maybe his cancer has not spread. I'll do more research but please, if you have insight share. I appreciate it SOOOOOOOO much. 

  • MandiePandie
    MandiePandie Member Posts: 83

    Father

    It's hard to ask right now as you aren't sure what kind of follow up they want to do. Make sure that you trust your doctors though and they sound concerned with any questions that you do have.  It's good to know that it doesn't sound like their was anymore involvement in other areas.  Wishing you dad the best on Monday.  He is lucky to have you as a caregiver.  It's going to be rough for him for a while, so he will need some reassurance on your part.  Please make sure that he always has someone that will go to his appointments with him so he has another set of ears.

    Kim

    I wish I could go with him

    Darn COVID means he has to go solo. I can't tell you how much I hate that. Already I imagine my father feeling overwhelmed and scared and he is SUCH a polite man that I worry a busy doctor will just, bark information and send him on his way. I am extrapolating I know, but I feel like I have to share every thought or I might explode! 

  • SnapDragon2
    SnapDragon2 Member Posts: 589 **
    edited December 2020 #10

    Ohhhhh

    Oh ok! Thank you for sharing that. Could it just possibly mean that his cancer is not that bad yet? Loaded question I know :P Im grasping for straws here, forgive me. I was hoping it was just an indicator that maybe his cancer has not spread. I'll do more research but please, if you have insight share. I appreciate it SOOOOOOOO much. 

    CT/PET scans are good for

    CT/PET scans are good for finding spread.  True telling of the primary cancer will be by pathology.

  • Annabelle41415
    Annabelle41415 Member Posts: 6,712 **

    I wish I could go with him

    Darn COVID means he has to go solo. I can't tell you how much I hate that. Already I imagine my father feeling overwhelmed and scared and he is SUCH a polite man that I worry a busy doctor will just, bark information and send him on his way. I am extrapolating I know, but I feel like I have to share every thought or I might explode! 

    I'm so saddened that your father cannot have anyone with him during his appointments.  Is there anyway he could bring some type of recorder in with him to tape the conversation that the doctor has with him?  Maybe some type of app on his phone, or a small recorder on it's own.  He really needs assurance that others are with him, even when they can't be physically.  The more you know about what the surgeon/oncologist recommends, the more you can ask here. 

    Kim

  • np22526
    np22526 Member Posts: 4 **
    edited December 2020 #12

    I wish I could go with him

    Darn COVID means he has to go solo. I can't tell you how much I hate that. Already I imagine my father feeling overwhelmed and scared and he is SUCH a polite man that I worry a busy doctor will just, bark information and send him on his way. I am extrapolating I know, but I feel like I have to share every thought or I might explode! 

    During one visit when i

    During one visit when i couldn't go with him, We asked doctor if its Ok to have me on call, so my dad called from oncologist's office and kept the phone on speaker. It wasn't the best solution but certainly worked.

  • AnneO1965
    AnneO1965 Member Posts: 182
    np22526 said:

    During one visit when i

    During one visit when i couldn't go with him, We asked doctor if its Ok to have me on call, so my dad called from oncologist's office and kept the phone on speaker. It wasn't the best solution but certainly worked.

    Right, that's what my

    Right, that's what my daughter and I just did... wasn't perfect, but better than nothing.

  • MandiePandie
    MandiePandie Member Posts: 83
    AnneO1965 said:

    Right, that's what my

    Right, that's what my daughter and I just did... wasn't perfect, but better than nothing.

    Yeah

    He is planning on calling my mom so I'm going to try and get in on it, but I'm getting the sense that maybe my dad wants to filter info to me. Idk. I don't want to baby him... but I also want to baby him lol. 

  • Annabelle41415
    Annabelle41415 Member Posts: 6,712 **
    np22526 said:

    During one visit when i

    During one visit when i couldn't go with him, We asked doctor if its Ok to have me on call, so my dad called from oncologist's office and kept the phone on speaker. It wasn't the best solution but certainly worked.

    Definitely

    Actually, that would be a better solution than a recorder because you could actually intervene and ask questions while the examination is going on.  Good idea and thanks for suggesting that during this time when other loved ones aren't able to be there with them.

    Kim