1. < Head & Neck Cancer

How much information do cancer patients need?

Posted by Maureen, Alumna Mentor @alpaca, Apr 15, 2018

Hello everyone in the head and neck cancer group. I hope you are doing okay. As for me, I have been struggling with my new dental plate but have also been energized by some advocacy work my group has been doing in Auckland. Our mission is to improve the amount of information we get from our clinicians. At the moment we get very little in my district. We would like access to more of our notes. Leading surgeon said, "But those pathology reports are very hard to read." I said Google. He said, "That's dangerous." What do you think?

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

Mentor
Sue, Volunteer Mentor | @sepdvm | Apr 16, 2018

One of the things I love about Mayo Clinic is how accessible our records are. I can usually get what I need by logging in to my online account. Your health care is all about active communication between the healthcare professionals and patients, so that the best decisions can be made together. As a veterinarian with 40 years of medical experience, I likely find it easier to digest the information, but any patient should have the opportunity to learn about their cancer. While I agee that Dr. Google can be dangerous, all it takes is picking and choosing between websites for those that are accurate scientific data.......government and major health care providers for example. I can see how MDs might not want their patients to know all the negative details, as I found it rather depressing when researching my cancer initially. I still think that if a patient desires to learn about and understand their diagnosis and treatment, then the information should be available to them.

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5 replies
Maureen, Alumna Mentor | @alpaca | Apr 16, 2018
In reply to @sepdvm "One of the things I love about Mayo Clinic is how accessible our records are. I..." + (show)
@sepdvm

One of the things I love about Mayo Clinic is how accessible our records are. I can usually get what I need by logging in to my online account. Your health care is all about active communication between the healthcare professionals and patients, so that the best decisions can be made together. As a veterinarian with 40 years of medical experience, I likely find it easier to digest the information, but any patient should have the opportunity to learn about their cancer. While I agee that Dr. Google can be dangerous, all it takes is picking and choosing between websites for those that are accurate scientific data.......government and major health care providers for example. I can see how MDs might not want their patients to know all the negative details, as I found it rather depressing when researching my cancer initially. I still think that if a patient desires to learn about and understand their diagnosis and treatment, then the information should be available to them.

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Hi @sepdvm, Hi Sue! would you mind if I cut and pasted this into a discussion I'm having on my closed FB group about access to info. We are very behind here and I want to change some minds.

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Douglas Loewen | @douger | Apr 16, 2018

In the past 2/3 years, following radiation, my wife Willa has made regular visits to Princess Margaret Cancer Hospital in Toronto , about a 2 1/2 hour drive, for a review of her inoperable tongue cancer. By the time we get home her oncologists full report of the visit is on-line to her . This report also goes to our Family Doctor. We find this a very helpful way to keep up to date on conditions and suggestions for ongoing care. Most of the info is well explained and if needbe discussed with our Family Doctor.

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Maureen, Alumna Mentor | @alpaca | Apr 16, 2018

Thank you @douger. This is good information for me to share with my people in Auckland. We still have lots of patients saying "I don't want to know" and many docs saying "Do patients really want to know that technical stuff?" We still need a cultural change here. It's probably also probably a matter of good IT.

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Mentor
Sue, Volunteer Mentor | @sepdvm | Apr 17, 2018
In reply to @sepdvm "One of the things I love about Mayo Clinic is how accessible our records are. I..." + (show)
@sepdvm

One of the things I love about Mayo Clinic is how accessible our records are. I can usually get what I need by logging in to my online account. Your health care is all about active communication between the healthcare professionals and patients, so that the best decisions can be made together. As a veterinarian with 40 years of medical experience, I likely find it easier to digest the information, but any patient should have the opportunity to learn about their cancer. While I agee that Dr. Google can be dangerous, all it takes is picking and choosing between websites for those that are accurate scientific data.......government and major health care providers for example. I can see how MDs might not want their patients to know all the negative details, as I found it rather depressing when researching my cancer initially. I still think that if a patient desires to learn about and understand their diagnosis and treatment, then the information should be available to them.

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That would be fine. Good luck making changes.

REPLY
ettap | @ettap | Apr 17, 2018
In reply to @sepdvm "One of the things I love about Mayo Clinic is how accessible our records are. I..." + (show)
@sepdvm

One of the things I love about Mayo Clinic is how accessible our records are. I can usually get what I need by logging in to my online account. Your health care is all about active communication between the healthcare professionals and patients, so that the best decisions can be made together. As a veterinarian with 40 years of medical experience, I likely find it easier to digest the information, but any patient should have the opportunity to learn about their cancer. While I agee that Dr. Google can be dangerous, all it takes is picking and choosing between websites for those that are accurate scientific data.......government and major health care providers for example. I can see how MDs might not want their patients to know all the negative details, as I found it rather depressing when researching my cancer initially. I still think that if a patient desires to learn about and understand their diagnosis and treatment, then the information should be available to them.

Jump to this post

Although not a patient at Mayo, I agree with you wholeheartedly. In my area, doctors use a patient portal to access your medical records if you so choose. I do. Do I always understand everything? No. Have I found errors in it? You bet. Has it provided me a platform to discuss things with my doctor(s)? Absolutely. Do I expect everything to be rosy or routine all the time? Nope, or I wouldn't have seen the doctor in the first place. I am currently in the care of a hematologist who, after having had several blood clotting events, discovered I had a genetic mutation that predisposes me to several blood cancers. It hasn't reared its ugly head yet, but it will. After being told about the mutation and not much else, I did the Google thing. There is so much info out there that will make your head spin and spew green stuff, lol! But it gave me a wonderful opportunity to discuss cause, effect, treatment options, symptoms to watch and what the future MAY hold. This discussion may have been inconvenient to my doctor who kept telling me to not worry just yet, but it was calming to me. I am the type person who does so, so much better when I know what to expect. It isn't as scary to me although I am not without concerns. It certainly put into perspective my need to get things that I have been putting off done now and that ain't a bad thing! I am my own advocate and info is power is my philosophy.

REPLY
Maureen, Alumna Mentor | @alpaca | Apr 17, 2018
In reply to @sepdvm "One of the things I love about Mayo Clinic is how accessible our records are. I..." + (show)
@sepdvm

One of the things I love about Mayo Clinic is how accessible our records are. I can usually get what I need by logging in to my online account. Your health care is all about active communication between the healthcare professionals and patients, so that the best decisions can be made together. As a veterinarian with 40 years of medical experience, I likely find it easier to digest the information, but any patient should have the opportunity to learn about their cancer. While I agee that Dr. Google can be dangerous, all it takes is picking and choosing between websites for those that are accurate scientific data.......government and major health care providers for example. I can see how MDs might not want their patients to know all the negative details, as I found it rather depressing when researching my cancer initially. I still think that if a patient desires to learn about and understand their diagnosis and treatment, then the information should be available to them.

Jump to this post

Thank you @ettap. You put it so well. I think there is a sort of scary mental wall you have to break through to feel ready to access your records or raw data and face up to the truth of the situation. The reality is not always as horrible as your worst imaginings. The unknown puts a patient in a vulnerable position but armed with the facts, you can go forward being prepared for the worst but hoping for the best.

REPLY
eastiegirl | @eastiegirl | Apr 18, 2018
In reply to @sepdvm "One of the things I love about Mayo Clinic is how accessible our records are. I..." + (show)
@sepdvm

One of the things I love about Mayo Clinic is how accessible our records are. I can usually get what I need by logging in to my online account. Your health care is all about active communication between the healthcare professionals and patients, so that the best decisions can be made together. As a veterinarian with 40 years of medical experience, I likely find it easier to digest the information, but any patient should have the opportunity to learn about their cancer. While I agee that Dr. Google can be dangerous, all it takes is picking and choosing between websites for those that are accurate scientific data.......government and major health care providers for example. I can see how MDs might not want their patients to know all the negative details, as I found it rather depressing when researching my cancer initially. I still think that if a patient desires to learn about and understand their diagnosis and treatment, then the information should be available to them.

Jump to this post

I could have written your post. Do what you are doing and keep informed, however that info is found. Good luck.

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