@kgbsawyr ,Welcome to Mayo Connect, we’re happy to have you with us. Are you using the Mayo patient portal? You can log on and select Health Record and then Test Results. You should see a list of radiology and most other results there.
Hi @cindyjk, I like to tell people that 'anyone with lungs can get lung cancer'. It's difficult to overcome the stigma, no thanks to anti-smoking campaigns from the 80's and 90's.
The truth is that no one deserves to get any cancer, including lung cancer. It's difficult to not pit one cancer against another, but I do try to share statistics when I'm presented with the opportunity. From the American Cancer Society:
"Lung cancer is by far the leading cause of cancer death in the US, accounting for about 1 in 5 of all cancer deaths. Each year, more people die of lung cancer than of colon, breast, and prostate cancers combined."
Also, federal funding for lung cancer has traditionally been disproportionately low. Hopefully that is starting to change.
We need to keep telling our stories, and I will continue to refuse to wear pink in October. Keep up the good fight. Wishing you many years of good health.
Lisa, I'm with you. We need to use our unique positions as survivors to advocate for more research funding. I've been giving lung cancer awareness talks at my workplace and was joined by the Director of Lung Cancer screening at my local cancer institute during my last presentation.
She told me about GO2 for Lung Cancer, go2.org, which is the largest fundraiser for lung cancer research dollars in the U.S. They've helped raise over $200M to date. I'll be traveling to their annual Summit in Washington, D.C. in early March as a survivor advocate. There, I will join other advocates, including survivors, caregivers, and members of the medical community, to present our reasons for advocacy to our Congressional leaders. My wife and I already have appointments scheduled to speak directly with our local representatives. Those meetings were arranged by GO2. Through GO2, I've received instructions on how to be an effective advocate, both in the 15-minute meeting with our representatives and with the local media.
I don't know how much time I have left, none of us do. But I'm determined to use whatever time I have left to advocate for increased awareness, more lung cancer screenings, more money for research, and anything else I can do to keep other people from having to go through what I've gone through and am going through.
Lisa, I'm with you. We need to use our unique positions as survivors to advocate for more research funding. I've been giving lung cancer awareness talks at my workplace and was joined by the Director of Lung Cancer screening at my local cancer institute during my last presentation.
She told me about GO2 for Lung Cancer, go2.org, which is the largest fundraiser for lung cancer research dollars in the U.S. They've helped raise over $200M to date. I'll be traveling to their annual Summit in Washington, D.C. in early March as a survivor advocate. There, I will join other advocates, including survivors, caregivers, and members of the medical community, to present our reasons for advocacy to our Congressional leaders. My wife and I already have appointments scheduled to speak directly with our local representatives. Those meetings were arranged by GO2. Through GO2, I've received instructions on how to be an effective advocate, both in the 15-minute meeting with our representatives and with the local media.
I don't know how much time I have left, none of us do. But I'm determined to use whatever time I have left to advocate for increased awareness, more lung cancer screenings, more money for research, and anything else I can do to keep other people from having to go through what I've gone through and am going through.
@kgbsawyr ,Welcome to Mayo Connect, we’re happy to have you with us. Are you using the Mayo patient portal? You can log on and select Health Record and then Test Results. You should see a list of radiology and most other results there.
Thanks. Yes, I downloaded the app. When I go to test results, all I see are blood test results. Oh I just noticed that you said “health records” I just thought you should look under test results for current stuff & health records for prior things. I’ll give it a go. Thanks again.
YES, awareness is important. I tell people what I have and describe my treatments so they can learn from my experience.
I also promote a "family tree" for health issues. They always ask you if someone in your family has a certain disease and most of the time we don't know much. But that is important information because it can determine your risk profile, and help doctors make a diagnosis. So we should track health issues down to 3rd degree relatives.
I should mention that everyone here can join me. As lung cancer survivors, we all qualify for GO2 free membership at go2.org. They have tons of information and support, including monthly live "Living Room" sessions attended by survivors, advocates, and sometimes medical personnel that are broadcast on either Zoom or YouTube Live. A camera is optional. New attendees are invited to tell their stories. Personally, I enjoy the real-time discussions, and I've already learned a lot about my EGFR mutation and its variations.
I should mention that everyone here can join me. As lung cancer survivors, we all qualify for GO2 free membership at go2.org. They have tons of information and support, including monthly live "Living Room" sessions attended by survivors, advocates, and sometimes medical personnel that are broadcast on either Zoom or YouTube Live. A camera is optional. New attendees are invited to tell their stories. Personally, I enjoy the real-time discussions, and I've already learned a lot about my EGFR mutation and its variations.
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@kgbsawyr ,Welcome to Mayo Connect, we’re happy to have you with us. Are you using the Mayo patient portal? You can log on and select Health Record and then Test Results. You should see a list of radiology and most other results there.
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1 ReactionLisa, I'm with you. We need to use our unique positions as survivors to advocate for more research funding. I've been giving lung cancer awareness talks at my workplace and was joined by the Director of Lung Cancer screening at my local cancer institute during my last presentation.
She told me about GO2 for Lung Cancer, go2.org, which is the largest fundraiser for lung cancer research dollars in the U.S. They've helped raise over $200M to date. I'll be traveling to their annual Summit in Washington, D.C. in early March as a survivor advocate. There, I will join other advocates, including survivors, caregivers, and members of the medical community, to present our reasons for advocacy to our Congressional leaders. My wife and I already have appointments scheduled to speak directly with our local representatives. Those meetings were arranged by GO2. Through GO2, I've received instructions on how to be an effective advocate, both in the 15-minute meeting with our representatives and with the local media.
I don't know how much time I have left, none of us do. But I'm determined to use whatever time I have left to advocate for increased awareness, more lung cancer screenings, more money for research, and anything else I can do to keep other people from having to go through what I've gone through and am going through.
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10 ReactionsThank you for your work Matthew @flusshund!
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1 ReactionThanks. Yes, I downloaded the app. When I go to test results, all I see are blood test results. Oh I just noticed that you said “health records” I just thought you should look under test results for current stuff & health records for prior things. I’ll give it a go. Thanks again.
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Like -
Helpful -
Hug
1 ReactionYES, awareness is important. I tell people what I have and describe my treatments so they can learn from my experience.
I also promote a "family tree" for health issues. They always ask you if someone in your family has a certain disease and most of the time we don't know much. But that is important information because it can determine your risk profile, and help doctors make a diagnosis. So we should track health issues down to 3rd degree relatives.
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Like -
Helpful -
Hug
1 ReactionI should mention that everyone here can join me. As lung cancer survivors, we all qualify for GO2 free membership at go2.org. They have tons of information and support, including monthly live "Living Room" sessions attended by survivors, advocates, and sometimes medical personnel that are broadcast on either Zoom or YouTube Live. A camera is optional. New attendees are invited to tell their stories. Personally, I enjoy the real-time discussions, and I've already learned a lot about my EGFR mutation and its variations.
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Like -
Helpful -
Hug
2 ReactionsThanks, I just joined go2.org