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?

Interested in more discussions like this? Go to the Lung Cancer Support Group.

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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@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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Welcome to Connect, @woodedareas. I agree with @llwortman. You may wish to contact Mayo Clinic billing directly to find out if your care can be transferred from one campus to another. Here is the contact information for billing https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/contact-us

You can also contact your care team through the Mayo patient portal, Online Patient Services https://onlineservices.mayoclinic.org/content/staticpatient/showpage/patientonline

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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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@woodedareas- Congratulations and welcome to Mayo Connect. I can only address your lung issues as I use and hospital on the east coast. Three weeks is a short time of recuperation so I hope that you are taking it easy. I'm a 22 year survivor of lung cancer. Did you have a lobe removed?

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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- Good morning. It's been over a month since you last posted and that we heard from you. I am hoping that your husband's health has stabilized and that the radiation is working. I am a 22 year lung cancer survivor and know first hand the initial emotions that come with those dreadful three words, "You have cancer." How are you both doing? Has you husband had any further treatments?

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@merpreb

@mcleslie- Good morning. It's been over a month since you last posted and that we heard from you. I am hoping that your husband's health has stabilized and that the radiation is working. I am a 22 year lung cancer survivor and know first hand the initial emotions that come with those dreadful three words, "You have cancer." How are you both doing? Has you husband had any further treatments?

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Thank you for checking in. The VA has been simply amazing and thankfully being a Veteran, this is all covered. My husband finished 5 weeks of radiation (69Gy in 23 fractions at 3Gy per) and completed 3 rounds of chemo (port in leg due to SVC), 2 more "mega" doses because everyone keeps saying he is young and can take it. Next up, immunotherapy for a year. Radiologist says he is doing well, and will evaluate by another scan in 3 months but indicates it is working.

So the official diagnosis is T2bN2Mx Stage 3A and most likely stage 3B per records. All I know is that it isn't great... no one really has translated that for us. Frankly I'm not sure I want to know but I guess I should. Right now nothing is operable. He has battled fatigue and nowjust a bit of peeling skin on his chest. We have hope and we don't live CANCER every day. It has been a quick long few weeks. We are coping but struggling financially on only one source of income... denied SS disability but will likely apply again. On to VA benefits compensation.

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@mcleslie

Thank you for checking in. The VA has been simply amazing and thankfully being a Veteran, this is all covered. My husband finished 5 weeks of radiation (69Gy in 23 fractions at 3Gy per) and completed 3 rounds of chemo (port in leg due to SVC), 2 more "mega" doses because everyone keeps saying he is young and can take it. Next up, immunotherapy for a year. Radiologist says he is doing well, and will evaluate by another scan in 3 months but indicates it is working.

So the official diagnosis is T2bN2Mx Stage 3A and most likely stage 3B per records. All I know is that it isn't great... no one really has translated that for us. Frankly I'm not sure I want to know but I guess I should. Right now nothing is operable. He has battled fatigue and nowjust a bit of peeling skin on his chest. We have hope and we don't live CANCER every day. It has been a quick long few weeks. We are coping but struggling financially on only one source of income... denied SS disability but will likely apply again. On to VA benefits compensation.

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@mcleslie- Oh it's great that you answered back! First about the fatigue. Unfortunately, it's the name of the game. Lung cancer takes up room in your lunges and gives you less oxygen to use on top of that radiation and chemo will make him very very tired. That will change as he gets through them. Living cancer every day could very well be your lives for a while. Cancer will stay with your husband as he will be looking over his shoulder to see if it returns, gets worse or is cured. For now, because of his on going treatment it is your lives, but you know that. As time goes by activities will be more of your focus than the illness itself.
I am so glad that the Vet is taking good care of you. Being on one income is tough but it looks as if you are on top of things for nowe link:.
Would you be interested in our caregiver's group? You have a very tough job that requires a lot of patience and love. It's tiring and stressful and you will need support from people who know how you feel and have been "there" Here is the link: https://connect.mayoclinic.org/group/caregivers/
I know that your husband is very tired. Might you ask him if would like to join this conversation himself?

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