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CLL - Follow Up Appointment Questions

Posted by joeeduffy @joeeduffy, Feb 22 8:59am

Hi everyone-

I don't know if anyone else after they were first diagnosed noticed that now everywhere you turn, everything you see is cancer this, cancer that. It is everywhere. Every commercial. Every guest on a talk show. Every movie. I feel that it has become all encompassing.

Except today, I had Good Morning America on the TV in the background and happened to overhear Robin Roberts speaking with someone. That someone was Kathy Giusti who wrote a book called Fatal and Fearless. She has some excellent advice and I ordered the book already.

Given the average amount of time that we are speaking with the Oncologist/Hemotologist, which is quoted to be approx 16 minutes (not a whole lot of time), what are the top questions that we need to ask for those of us who are completely in the dark having gone through blood work with a fine tooth comb before talking to anyone while we 'patiently' wait.

Thanks so much in advance and I hope that everyone is feeling as fantastic as fantastic can be today and everyday.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 26 4:16pm

@joeeduffy, it's so true. Once diagnosed with cancer, one hears it everywhere! The uses of the word that get to me the most are when the word cancer is used out of the medical context, like "the surge in urban sprawl was like a cancer on the landscape" or similar.

Your time with the oncologist or hematologist is precious, so preparing questions ahead of time can be helpful for organizing your thoughts and verifying that everything got addressed.

Here's a few to get the ball rolling:
- What do my test results mean? (insert more specific questions you may have after reading test results on the patient portal)
- Do these results change anything in my management plan or treatment?
- I have other health conditions. How can I best manage them together?
- When do I see you again?
- What else do I need to know?

I also like to offer the tip of repeating back to the physician anything that you're unsure. I repeat back in my own words what I understood the information or instructions to be. This allows the doctor to clarify anything I've understood incorrectly, but also to see where their explanation may have missed something.

What questions would you add?

REPLY
1 reply
legacyrock | @legacyrock | Feb 26 6:30pm

Check out a book called, Chris Beat Cancer. There’s also a podcast by the same title that I have found very interesting.

REPLY
joeeduffy | @joeeduffy | Feb 27 1:37pm
In reply to @colleenyoung "@joeeduffy, it's so true. Once diagnosed with cancer, one hears it everywhere! The uses of the..." + (show)
@colleenyoung

@joeeduffy, it's so true. Once diagnosed with cancer, one hears it everywhere! The uses of the word that get to me the most are when the word cancer is used out of the medical context, like "the surge in urban sprawl was like a cancer on the landscape" or similar.

Your time with the oncologist or hematologist is precious, so preparing questions ahead of time can be helpful for organizing your thoughts and verifying that everything got addressed.

Here's a few to get the ball rolling:
- What do my test results mean? (insert more specific questions you may have after reading test results on the patient portal)
- Do these results change anything in my management plan or treatment?
- I have other health conditions. How can I best manage them together?
- When do I see you again?
- What else do I need to know?

I also like to offer the tip of repeating back to the physician anything that you're unsure. I repeat back in my own words what I understood the information or instructions to be. This allows the doctor to clarify anything I've understood incorrectly, but also to see where their explanation may have missed something.

What questions would you add?

Jump to this post

Colleen-

Thank you so much! It happened again yesterday morning as I had the news on in the background and heard them start talking about the PACT Act and Veterans (of which my husband is a NAVY veteran). We are in the process of working with them to see if he qualifies under the act as he was on one of the ships during a time of coverage as well as being in Kuwait during his time in the Reserves. It is so strange how it really is everywhere.

One of my clients just today told me her brother had another form of blood cancer and it has been 11 years and he is doing wonderfully.

I pray everyday that everyone does and that there are cures and advancements as it seems a bit out of control and becoming much, much too common.

Thank you so much for the questions to ask. I am working on some more so I am armed for them on Thursday. As well, I am such a believer in repeating! I do this when someone introduces themselves as well. Saying it back is supposed to help remember better (sometimes....). LOL

Thank you again so very much and please keep us in your prayers and I will keep everyone in ours.

REPLY
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