Living with lung cancer - Introduce yourself & come say hi

Welcome to the Lung Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with lung cancer or caring for someone with lung cancer. Let’s learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentors and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself?

Yes he really has never lost his appetite; at times foods have not tasted all that great but he has pretty well maintained his wight over the almost last 3 years – Oct 25 i think is when was diagnosed so will be starting the 3rd years soon

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@reibur1951

I am tired from all the clean up work… I had just came in from being in front yard all daydid nto catch the typo and internet has been down since Thursday
till late sometime yesterday afternoon and its been popping on/of and down several times completely since June phone/internet service has been absolutely the pits from centurylink this summer for some reason. Because of the neck lymph node he was taken off of the clinical studies but his Dr. is continuing with the immunology KEYTRUDA® (pembrolizumab) treatments… there may be other clinical studies down the line… he is staying with IU Medical/Simon Cancer center

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@reibur1951 Sorry to hear how you keep finding out how much fuller your plate can get. Glad to hear your sticking with the experts, even with the distance and additional pulls on your time lately. May you sleep well at night not just from exhaustion but from knowing how you've put your sick friend's best interest first!

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@bluelagoon I have never minded or regretted the distant of travel it involves… I fact when ct's are invovled for all of 5-10 minutes we travel to IU Medical/Simon Cancer center for them they know what they want – they are there for the next visit which is 2-3 days later and there is no hassle of getting them sent to them. It beats the care his father received to Me QUALITY of care and COMMUNICATION are of the utmost I do not care how far would have to travel to get it… I know his father's dr/ (hematologist/oncologist) could not understand why he was not coming to his practice but it was because of him – his lack of communication; take this medication because I tell you too and side effects be dam and not listening and talking in analogies (which do not cut the mustard)

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My husband was diagnosed with stage 4 lung cancer, about two weeks ago? The time is a blur. He just finished week one of 5 or so projected weeks of radiation. He wasn't feeling well, we thought it was a sinus infection and chest cold. He signed up for his VA benefits and his doctor sent him for a chest xray. Since then, CAT Scan, bronchoscopy, PET scan and endless blood work. The VA has been great, so far. Now we recognize what were likely symptoms that we just thought were just not related to anything serious.

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@mcleslie

My husband was diagnosed with stage 4 lung cancer, about two weeks ago? The time is a blur. He just finished week one of 5 or so projected weeks of radiation. He wasn't feeling well, we thought it was a sinus infection and chest cold. He signed up for his VA benefits and his doctor sent him for a chest xray. Since then, CAT Scan, bronchoscopy, PET scan and endless blood work. The VA has been great, so far. Now we recognize what were likely symptoms that we just thought were just not related to anything serious.

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Hello @mcleslie and welcome to Mayo Connect. I'm sorry to hear of your husband's recent diagnosis of lung cancer. I can imagine the time is a blur for you both. Cancer is always an unsettling diagnosis that leaves everyone in a tailspin. I'm glad that he is getting good treatment from the VA.

You said that he had symptoms prior to the diagnosis that was related to lung cancer. If you are comfortable sharing more, what were those symptoms? What is his most difficult symptom now?

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@mcleslie

My husband was diagnosed with stage 4 lung cancer, about two weeks ago? The time is a blur. He just finished week one of 5 or so projected weeks of radiation. He wasn't feeling well, we thought it was a sinus infection and chest cold. He signed up for his VA benefits and his doctor sent him for a chest xray. Since then, CAT Scan, bronchoscopy, PET scan and endless blood work. The VA has been great, so far. Now we recognize what were likely symptoms that we just thought were just not related to anything serious.

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Hi McLeslie – I am sorry about your husband's recent diagnosis and that he is not feeling well. Yes, the symptoms mimic so may other things and it can come as quite a shock when you finally get the diagnosis. And that diagnosis is terrifying and difficult. Things do tend to settle down to a new normal however and I am praying for peace and healing for you both. Many survivors here and we are here for you.

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@hopeful33250

Hello @mcleslie and welcome to Mayo Connect. I'm sorry to hear of your husband's recent diagnosis of lung cancer. I can imagine the time is a blur for you both. Cancer is always an unsettling diagnosis that leaves everyone in a tailspin. I'm glad that he is getting good treatment from the VA.

You said that he had symptoms prior to the diagnosis that was related to lung cancer. If you are comfortable sharing more, what were those symptoms? What is his most difficult symptom now?

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What we thought was an on again off again muscle strain/knot in his upper back was likely warning pain. His Dad, who hadn't seen him in awhile said he looked flushed but he has always been an outdoor guy, we thought it was too much fishing. And now his most difficult symptom is fatigue and swelling of his face (we thought it was a sinus infection), shortness of breath. The tumor is pressing against an artery causing the swelling but steroids are helping and radiation should shrink the mass/tumor.

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@mcleslie

What we thought was an on again off again muscle strain/knot in his upper back was likely warning pain. His Dad, who hadn't seen him in awhile said he looked flushed but he has always been an outdoor guy, we thought it was too much fishing. And now his most difficult symptom is fatigue and swelling of his face (we thought it was a sinus infection), shortness of breath. The tumor is pressing against an artery causing the swelling but steroids are helping and radiation should shrink the mass/tumor.

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@mcleslie

I can certainly understand that a muscle strain in the upper back would certainly not lead you to think of lung cancer. I'm glad to hear that the tumor can be managed and reduced with radiation and that the steroids are helping the swelling. I'd like to invite @merpreb to this discussion as well. She is a volunteer mentor and has been dealing with lung cancer for a number of years. I'm sure she can add some perspective to your situation.

Do the doctors anticipate that your husband might need surgery at some point or will they wait and see how the radiation is working? Does he still have shortness of breath or has that improved?

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@mcleslie

My husband was diagnosed with stage 4 lung cancer, about two weeks ago? The time is a blur. He just finished week one of 5 or so projected weeks of radiation. He wasn't feeling well, we thought it was a sinus infection and chest cold. He signed up for his VA benefits and his doctor sent him for a chest xray. Since then, CAT Scan, bronchoscopy, PET scan and endless blood work. The VA has been great, so far. Now we recognize what were likely symptoms that we just thought were just not related to anything serious.

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@mcleslie – I also welcome you to Mayo Clinic Connect. It's gut wrenching when you learn that your husband is ill. I almost lost my husband a couple of years ago to a bad virus. I know just what you mean when you say that life has been a blur. This is not an easy road. When I first was told that I had lung cancer 20+ years ago I don't think that I even could remember one test or scan from another. It was like someone put me on remote control while I walked around feeling sheer terror. I'm familiar with how the VA responds to medical problems and I must say that I'm impressed with the speediness that your husband has received treatment. What type of radiation is your husband receiving? What type of lung cancer does your husband have?

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@hopeful33250

@mcleslie

I can certainly understand that a muscle strain in the upper back would certainly not lead you to think of lung cancer. I'm glad to hear that the tumor can be managed and reduced with radiation and that the steroids are helping the swelling. I'd like to invite @merpreb to this discussion as well. She is a volunteer mentor and has been dealing with lung cancer for a number of years. I'm sure she can add some perspective to your situation.

Do the doctors anticipate that your husband might need surgery at some point or will they wait and see how the radiation is working? Does he still have shortness of breath or has that improved?

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@hopeful33250 Thank you for inviting me to this post. @mcleslie– I welcomed you here this morning but we really didn't get into the nuts and bolts of lung cancer. I think that when I initially feel that I have an ache or pain I gloss over it too. I think that it's a a matter of self preservation, denial.
I'm curious to know what kind of radiation that your husband is having?

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I just completed VAT surgery in Chicago for stage 1a lung cancer. I will have to report back in 3 months for a mother CAT scan. I am doing well now 3 weeks later. I would like to visit my home in Arizona but find that Mayo will not accept Medicare. I have been a patient in Rochester with no problem. Since this a Mayo website can someone tell me if I qualify for care at Mayo or if I should look elsewhere. Last year I tried 3 time for anappintment but was denied ar Scottsdale. Thanks

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@woodedareas

I just completed VAT surgery in Chicago for stage 1a lung cancer. I will have to report back in 3 months for a mother CAT scan. I am doing well now 3 weeks later. I would like to visit my home in Arizona but find that Mayo will not accept Medicare. I have been a patient in Rochester with no problem. Since this a Mayo website can someone tell me if I qualify for care at Mayo or if I should look elsewhere. Last year I tried 3 time for anappintment but was denied ar Scottsdale. Thanks

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Hi and congratulations on your surgery. I am a 12 year lung cancer survivor (never smoker diagnosed stage 1a)
I love my Mayo Thoracic team. Dr Steven Cassivi is brilliant and kind!
Try calling Kristin or Karen on his team directly to see if they will give you appointment(?) 5072842808.
If you prefer Pulmonology you may want to call Dr David Midthun.
My feeling is they are the best team and cal answer your questions and help you decide who you can see and where. Have your Mayo Clinic number when you call. The call is worth the wait. I’m happy to talk with you if you would like.
Best,
Linda Wortman

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@llwortman

Hi and congratulations on your surgery. I am a 12 year lung cancer survivor (never smoker diagnosed stage 1a)
I love my Mayo Thoracic team. Dr Steven Cassivi is brilliant and kind!
Try calling Kristin or Karen on his team directly to see if they will give you appointment(?) 5072842808.
If you prefer Pulmonology you may want to call Dr David Midthun.
My feeling is they are the best team and cal answer your questions and help you decide who you can see and where. Have your Mayo Clinic number when you call. The call is worth the wait. I’m happy to talk with you if you would like.
Best,
Linda Wortman

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I started with Dr Cassini in Rochester but chose to have my surgery in Chicago with my family nearby. I am now looking for a doctor in Arizona for the winter. Mayo in Scottsdale will not accept Medicare, unlike Rochester. Happy you are well. Thanks

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@woodedareas

I started with Dr Cassini in Rochester but chose to have my surgery in Chicago with my family nearby. I am now looking for a doctor in Arizona for the winter. Mayo in Scottsdale will not accept Medicare, unlike Rochester. Happy you are well. Thanks

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Talk to Thorasics in Rochester. They can refer you to Arizona. I just heard the same story from a friend. They got in after we spoke!

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@llwortman

Talk to Thorasics in Rochester. They can refer you to Arizona. I just heard the same story from a friend. They got in after we spoke!

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Thanks that is a great recommendation.

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