I'm armed....

HollyID
HollyID Member Posts: 946 Member
edited March 2014 in Colorectal Cancer #1
Ready for my appointment with my onc on Monday.

I've got (literally) 40 questions for him... well, I guess more than that because I've got more than a couple that are in the same question.

I've got my hospital records copied (one for him and one for me). It was suggested that I get a three-ring binder with dividers and put all my records in there. I do plan on asking for copies of all my labs and other paperwork when it's done.

I've got my pathology reports from both the scope and the resection.

The only thing I wish I could change is why I didn't come here earlier (read: before my resection) so I could have been better informed on what I could have and should have had done during surgery. Why didn't we put a port in then? Why didn't we have a CT done before or after surgery? I know he looked and felt every organ I have in there, but does it really take the place of a CT? I have lots of why questions. LOL... I'm figuring I'll always have those, but in reality, I think we all may. Another nature of the beast.

I think I'm pretty well armed with all the questions I have, all the research I've done on the drugs and their side effects and I can at least, make some educational decisions based on that. I had an author friend of mine ask me why I don't write a book on becoming your own advocate, because as we all know, if you aren't your own advocate, things can go south pretty fast. :)

If you guys can think of something I'm missing, I'd sure appreciate your input or comments.

I'm still pretty green when it comes to "the beast". Geez, sometimes I wished I would have at least studied it a bit more when I was in school. I digress. :)

Holly

Comments

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #2
    This Also Will Help You :)
    Hi Holly

    This will help you too - since you have so many questions for your doctor, why don't you FAX them over to your doctor in advance - this will give your onc time to address your concerns.

    Trying to ask 40 questions and get 40 answers and trying to remember those 40 answers is a daunting task to say the least - and the length of the appointment time factors in.

    I did this with my onc - I'd fax them to him and when I hit his door I had my copy in my mind and we'd go down the list. It makes for a better visit and you can jot down notes and such.

    Try this :)

    -Craig
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    #3
    port answer
    I can answer one question for you.

    The insurance company won't pay for a second surgical site (port insertion) during a surgery. Ka-CHING!
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #4
    Sundanceh said:

    This Also Will Help You :)
    Hi Holly

    This will help you too - since you have so many questions for your doctor, why don't you FAX them over to your doctor in advance - this will give your onc time to address your concerns.

    Trying to ask 40 questions and get 40 answers and trying to remember those 40 answers is a daunting task to say the least - and the length of the appointment time factors in.

    I did this with my onc - I'd fax them to him and when I hit his door I had my copy in my mind and we'd go down the list. It makes for a better visit and you can jot down notes and such.

    Try this :)

    -Craig

    or copy and paste em here...
    and we'll proof read them for ya...we live for this kinda stuff...:)
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #5
    dianetavegia said:

    port answer
    I can answer one question for you.

    The insurance company won't pay for a second surgical site (port insertion) during a surgery. Ka-CHING!

    I have kin folk that let me know that ....
    the National Guidelines do not allow but so many scans in so much time...The difference between the possibility of radiation damage from scans versus the damage cancer does. It seems as the lesser of two evils I guess.....Im thinking KA-CHING again.....
  • geotina
    geotina Member Posts: 2,111 Member
    #6
    dianetavegia said:

    port answer
    I can answer one question for you.

    The insurance company won't pay for a second surgical site (port insertion) during a surgery. Ka-CHING!

    I wondered the same thing
    When George had his resection, I wondered why didn't they do the port at the same time instead of making us come back for a second surgery, even though the port is minor, you still have to go to the hospital, get admitted, get put under, etc. Ka-Ching, never though of that. Thanks Tina
  • HollyID
    HollyID Member Posts: 946 Member
    #7
    dianetavegia said:

    port answer
    I can answer one question for you.

    The insurance company won't pay for a second surgical site (port insertion) during a surgery. Ka-CHING!

    Ka-CHING!!
    Of course! *slapping myself in the forehead*

    It's always better and easier to have another outpatient thing to pay for. *Sarcasm*

    I know they don't take long. Never seen one applied in a Dr's office, but used to put em in all the time in the ER.
  • HollyID
    HollyID Member Posts: 946 Member
    #8
    Buzzard said:

    or copy and paste em here...
    and we'll proof read them for ya...we live for this kinda stuff...:)

    I could... but they would
    I could... but they would probably put you asleep.

    I think one of the best things about my questions is they all don't have to be answered on the first visit... Except they told me to plan on at least an hour and a half to two hours for this visit. I plan to use those minutes wisely. :o)
  • HollyID
    HollyID Member Posts: 946 Member
    #9
    Buzzard said:

    I have kin folk that let me know that ....
    the National Guidelines do not allow but so many scans in so much time...The difference between the possibility of radiation damage from scans versus the damage cancer does. It seems as the lesser of two evils I guess.....Im thinking KA-CHING again.....

    I really trust my doc when
    I really trust my doc when he said he didn't see or feel anything in any other organ other that my colon. Maybe it's just a peace of mind thing, but then even scans miss sometimes, ya know?

    I need Clark Kent's x-ray vision. :O)
  • KFalvey
    KFalvey Member Posts: 118 Member
    #10
    Port at same time of surgery
    Hi Holly,
    The main reason they don't put in a port during surgery is unless they already know it has spread to your lymph nodes or other organs ( surgery is when they stage the cancer), they don't know if you will need a port. I did have one put in at the same time as my second surgery to remove a recurrance in my ovary. The doctor told me I'd have to go back on chemo so I had the surgeon place another port at that time. My insurance covered it without any questions. They actually save since you don't have to go in for another procedure and be put to sleep again. I had the first port removed as soon as I was done with chemo because it was very uncomfortable.
    This is one thing none of us wanted to be really knowledgable in but end up with a crash course in it pretty quickly after we have been diagnosed. I found it is comforting to be well informed; that way you are ready for almost anything you will face and it all was easier for me than I expected. I hope it turns out that way for you too. Good Luck.
    Kandy
  • k1
    k1 Member Posts: 220 Member
    #11
    "The Notebook"
    Hey I also heard about the notebook/binder idea and I finally did my ultimate cancer notebook yesteday before I went back to oncologist. It helps!

    The last four months I was attempting to carry a cheap paper pocket folder with loose papers for question lists and copies of lab reports or research articles to each visit. Thought that would be good enough.

    But everytime I went to an appointment I'd be fumbling around and papers falling out and they'd give me a few new ones and then first folder got full and I had to get a second one and by then I had two different ones my gray folder (pre surgery and surgeon visits) and then my pink one (Oncologist appointments). Both overstuffed.

    If I would get an answer to a question I'd be jotting down notes on this or that or the reverse side of a lab report or something totally unorganized like that -- This was no system at all and if I had to call a dr. office I still had to fumble around or call information to get a phone number to double check my appointment time etc.. because the little appointment cards were lost in the shuffle of bigger papers -- in other words, a mess!

    Yesterday I got serious. I bought a zippered cloth three-ring binder at WalMart (so my stuff could remain private if I had to leave it lying around somewhere during treatment). I also bought a set of dividers, and a business card holder page (for all the business cards of providers so phone numbers and next appoointment date are handy).

    This particular binder also has three file folder pocket where you can stick stuff they give you on a visit until you have time to later put it in a section. And pen holders, and a zipper mesh pocket for miscellaneous stuff. And I actually took a plain spiral notebook with three hole punch and put it in the ring binder too, for ongoing questions lists and to jot down the answers I get.

    It really made a difference to go to the doctor organized like that and I see why they suggest cancer patients keep something like that. I felt organized and empowered. Maybe other people do not need such a system but for me it's working and I sure feel less stress knowing exactly where things are and being able to pull out my tumor path report or my CEA report on a moment's notice on a medical visit.

    K1
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #12
    Don't go alone
    If you can, have someone go with you to that visit. Oncology visits can be so daunting at first.

    *hugs*
    Gail
  • HollyID
    HollyID Member Posts: 946 Member
    #13
    tootsie1 said:

    Don't go alone
    If you can, have someone go with you to that visit. Oncology visits can be so daunting at first.

    *hugs*
    Gail

    Thanks Gail...
    My husband is going with me. He's been a rock through this whole thing. He catches things that are said that I miss. If I could fine mine, I'd bring a little tape recorder I bought in college that I used to take to class.

    I also have kids that would go with me as well, but I don't really want to put them through this, either.

    When I was first diagnosed, it was funny how my mind was stuck and all I could do was focus on one thing, while the doc kept talking. I missed it all. Dave picked up everything else he said. They taught us that happened in nursing school, and now that I've experienced that, I know it does. :o)
  • HollyID
    HollyID Member Posts: 946 Member
    #14
    k1 said:

    "The Notebook"
    Hey I also heard about the notebook/binder idea and I finally did my ultimate cancer notebook yesteday before I went back to oncologist. It helps!

    The last four months I was attempting to carry a cheap paper pocket folder with loose papers for question lists and copies of lab reports or research articles to each visit. Thought that would be good enough.

    But everytime I went to an appointment I'd be fumbling around and papers falling out and they'd give me a few new ones and then first folder got full and I had to get a second one and by then I had two different ones my gray folder (pre surgery and surgeon visits) and then my pink one (Oncologist appointments). Both overstuffed.

    If I would get an answer to a question I'd be jotting down notes on this or that or the reverse side of a lab report or something totally unorganized like that -- This was no system at all and if I had to call a dr. office I still had to fumble around or call information to get a phone number to double check my appointment time etc.. because the little appointment cards were lost in the shuffle of bigger papers -- in other words, a mess!

    Yesterday I got serious. I bought a zippered cloth three-ring binder at WalMart (so my stuff could remain private if I had to leave it lying around somewhere during treatment). I also bought a set of dividers, and a business card holder page (for all the business cards of providers so phone numbers and next appoointment date are handy).

    This particular binder also has three file folder pocket where you can stick stuff they give you on a visit until you have time to later put it in a section. And pen holders, and a zipper mesh pocket for miscellaneous stuff. And I actually took a plain spiral notebook with three hole punch and put it in the ring binder too, for ongoing questions lists and to jot down the answers I get.

    It really made a difference to go to the doctor organized like that and I see why they suggest cancer patients keep something like that. I felt organized and empowered. Maybe other people do not need such a system but for me it's working and I sure feel less stress knowing exactly where things are and being able to pull out my tumor path report or my CEA report on a moment's notice on a medical visit.

    K1

    Your notebook sounds much
    Your notebook sounds much more organized than mine does! :o) I don't have a place for pens, etc... Just a plain old notebook that I scrounged up. I guess I'll have to see how this works.

    I'm not organized by nature. This could be tough for me! LOL
  • HollyID
    HollyID Member Posts: 946 Member
    #15
    KFalvey said:

    Port at same time of surgery
    Hi Holly,
    The main reason they don't put in a port during surgery is unless they already know it has spread to your lymph nodes or other organs ( surgery is when they stage the cancer), they don't know if you will need a port. I did have one put in at the same time as my second surgery to remove a recurrance in my ovary. The doctor told me I'd have to go back on chemo so I had the surgeon place another port at that time. My insurance covered it without any questions. They actually save since you don't have to go in for another procedure and be put to sleep again. I had the first port removed as soon as I was done with chemo because it was very uncomfortable.
    This is one thing none of us wanted to be really knowledgable in but end up with a crash course in it pretty quickly after we have been diagnosed. I found it is comforting to be well informed; that way you are ready for almost anything you will face and it all was easier for me than I expected. I hope it turns out that way for you too. Good Luck.
    Kandy

    Thank You!
    It's so funny because, when I look at the pictures from my scope and see that tumor, I knew it was cancer and I knew it wasn't good. I mean I already had pictures of me hooked up to chemo before surgery even took place.

    I know now that even stage II's get chemo. By the look of the tumor, you knew it wasn't a stage I. I still am trying to figure out how I couldn't have had any signs or symptoms of what was going on in there.

    I did look at my insurance policy yesterday after I seen Diane's post. It would have paid if I needed it. In fact, I wanted to look up what it pays for chemo and other things as well. We're so very lucky that we have good insurance. I really wish I would have signed up for AFLAC at work back in Oct. but I digress. :o)

    It does feel good to be well informed. I know what I need to ask to make me more informed.
    If it weren't for this board and ALL these WONDERFUL people, I would be LOST. I mean lost. I learned more here in a few weeks than I did in nursing school. :o)
  • ann2008
    ann2008 Member Posts: 118
    #16
    KFalvey said:

    Port at same time of surgery
    Hi Holly,
    The main reason they don't put in a port during surgery is unless they already know it has spread to your lymph nodes or other organs ( surgery is when they stage the cancer), they don't know if you will need a port. I did have one put in at the same time as my second surgery to remove a recurrance in my ovary. The doctor told me I'd have to go back on chemo so I had the surgeon place another port at that time. My insurance covered it without any questions. They actually save since you don't have to go in for another procedure and be put to sleep again. I had the first port removed as soon as I was done with chemo because it was very uncomfortable.
    This is one thing none of us wanted to be really knowledgable in but end up with a crash course in it pretty quickly after we have been diagnosed. I found it is comforting to be well informed; that way you are ready for almost anything you will face and it all was easier for me than I expected. I hope it turns out that way for you too. Good Luck.
    Kandy

    Port
    I was going to say ame thing, that my port wasn't put in until after surgery to make sure I had to have chemo. It showed up in 3 of 17 lymph nodes and so that was that. Good luck on Monday and know my prayers are with you. Ann.
  • Unknown
    Unknown
    #17
    HollyID said:

    Thanks Gail...
    My husband is going with me. He's been a rock through this whole thing. He catches things that are said that I miss. If I could fine mine, I'd bring a little tape recorder I bought in college that I used to take to class.

    I also have kids that would go with me as well, but I don't really want to put them through this, either.

    When I was first diagnosed, it was funny how my mind was stuck and all I could do was focus on one thing, while the doc kept talking. I missed it all. Dave picked up everything else he said. They taught us that happened in nursing school, and now that I've experienced that, I know it does. :o)

    This comment has been removed by the Moderator

Discussion Boards