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.

My mom was recently diagnosed with lung cancer. She was told by doctors here in north Dakota that she might now be able to have any treatment options. I dont if that's true. Our hospital doesnt have the best rep. I was thinking of talking to someone at the mayo to see if maybe she should be seen there. She is a heart attack survivor and cant have major surgery. Also on alot of medications for her heart. We are not sure of the stage. Idk what I'm looking for. I just dont want to lose my mom. She just had her first grandchild 4 months ago. I just need some help. I need to know if there could be a way to save her.

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@sltrail

My mom was recently diagnosed with lung cancer. She was told by doctors here in north Dakota that she might now be able to have any treatment options. I dont if that's true. Our hospital doesnt have the best rep. I was thinking of talking to someone at the mayo to see if maybe she should be seen there. She is a heart attack survivor and cant have major surgery. Also on alot of medications for her heart. We are not sure of the stage. Idk what I'm looking for. I just dont want to lose my mom. She just had her first grandchild 4 months ago. I just need some help. I need to know if there could be a way to save her.

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I commend you for asking about your mom and her diagnosis with lung cancer. I am an 11 year survivor.
Mayo Clinic "listened to my two year concerns & symptoms" Properly Diagnosed and Properly Treated me.
Dr Stephen Cassivi and his entire team in Thorasic's at Mayo are remarkable, compassionate and brilliant.
I encourage you to call and make an appointment. I have suggested this to others who live in the Dakota's.
I understand clearly that states line mine and yours do not always have the life saving resources for lung cancer.
My doctors in Montana told me, I looked healthy and perhaps my cough was psychological. It was in fact Non
Small Cell Carcinoma Lung Cancer. I have seen the world of lung cancer research grown in life saving leaps and
bounds and target therapies maybe an option for your mom? But call now and get in the car and drive. You can book hotels for significant discounts on Hotwire in the city of Rochester walking distance from Mayo.
I know many many people with stage 4 lung cancer living with a good quality of life...being treated at
research facilities like Mayo Clinic where doctors and staff work in teams. You are a blessing for caring so deeply.
That grandchild will be her inspiration. I believe there is HOPE. Many Blessings to you and your mom.

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Hello @sltrai,

I can only imagine what you must be going through – I’m so sorry! I moved your message and combined it with this existing discussion so that you can meet some other members who are talking about lung cancer.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

In the meantime, I'd encourage you to read this information from Mayo Clinic, https://www.mayoclinic.org/diseases-conditions/lung-cancer/diagnosis-treatment/drc-20374627

@sltrail, having a parent diagnosed with cancer can shake your very foundation, but I sincerely encourage you to try and not get sucked into moment-by-moment developments. Until you find out more, just being there for your mum, and continuing to participate in life to the utmost is perhaps the best that you can do. I’m glad you've joined us, and I want you to know we’re here and we’re listening.

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@merpreb

margot- wait and let the tests tell the story! I had a spot on my liver and it turned out to be nothing. Spots come and go.

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I too had spots (3) on my liver and went through a liver biopsy that proved they were they were nothing!

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@margot69

I don't have a definite diagnosis, just what the doctor said looking at the CT. I still need a biopsy done. The only doctor I trust here is my GI Doctor. I asked him to look at the CT. He called me at home as other people can see messages sent. He said wait to see what the PET and biopsy show. He also said to get a second opinion and Stanford has a Cancer satellite in a town close by and, if it goes that way, Imcoukd get treatment there and stay home. I am aware of Mayo in AZ but, also due to my husband needing to stay near his Cardiologist, at least for a while, it would be difficult to gave to travel and stay somewhere. I don't know how people do that then have no bs Kip when they return home. Thanks!

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I realized I skipped over something that in my case led me to leave my state for Mayo, but likely is just what you are looking for where you are. Google "best lung cancer hospitals in California" (and also just "best lung cancer hospitals" to see the National list) and you'll see a US New & World Report article on patch.com. In my case our major metro hospital wasn't even in our own state's top 10 and even the better ones nearby didn't look that much better compared to the Top 20 nationally. Since travel wasn't as issue we quickly decided with that info we wanted to travel. In California it looks like both of the places you asked about are listed in the National Top 20, which would give me great comfort with staying in your area.

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Hello! I' Maria from Greece. I' m 46 and my husband 63, has non small cell lung cancer stage 3b or 4. He' s on immunotherapy ( keytruda ) for a year now. The tumor has shrunk from 3 cm to 0.9 cm. He is very positive, he has a very good attitude but i' m depressed. We have 2 kids 17 and 15 and I don' t have a job. I' m worried about the future. Family is close to us but most of our friends not. I guess people are minding their own business. Wish you all the best! Merry Christmas ( sorry for my English. ...)

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@seaspray

I too had spots (3) on my liver and went through a liver biopsy that proved they were they were nothing!

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I pray that will be a be case. I messaged my GI Doctor, the only one I have any faith in around here, and he called me at home as others can read messages sent. He looked at the CT and said let's wait for the results of the PET scan. He also suggested I get a second opinion if it goes that way. At least he is some support! My Pulmonologist said he thought it was lung cancer, aggressive, handed me two phamphlets to read and left the room. My PCP gave me the name of his church and priest!

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@bluelagoon

I realized I skipped over something that in my case led me to leave my state for Mayo, but likely is just what you are looking for where you are. Google "best lung cancer hospitals in California" (and also just "best lung cancer hospitals" to see the National list) and you'll see a US New & World Report article on patch.com. In my case our major metro hospital wasn't even in our own state's top 10 and even the better ones nearby didn't look that much better compared to the Top 20 nationally. Since travel wasn't as issue we quickly decided with that info we wanted to travel. In California it looks like both of the places you asked about are listed in the National Top 20, which would give me great comfort with staying in your area.

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Thank you for taking the time to check. I did check that list and Stanford and UCSF are on the list but not at the top. My GI said Stanfird has a satellite Cancer near us I could get treatment at. I also read any biopsies should be sent out for genetic testing and he said they automatically do that but I don't trust things being done right.

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@margot69

I pray that will be a be case. I messaged my GI Doctor, the only one I have any faith in around here, and he called me at home as others can read messages sent. He looked at the CT and said let's wait for the results of the PET scan. He also suggested I get a second opinion if it goes that way. At least he is some support! My Pulmonologist said he thought it was lung cancer, aggressive, handed me two phamphlets to read and left the room. My PCP gave me the name of his church and priest!

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Oh Margot that's totally unprofessional. You really need to find a good doctor. I fear for you.

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Hello Maria @maraki,and welcome to Connect. It’s but natural to be worried and anxious when your spouse has cancer – I’m so glad you’ve joined this group. I'd like to introduce you to @burrkay @basil9 @bestcare @ina3 @sderbin @lady1lake, who are also living with or caring for someone with stage 3b or 4 non small-cell lung cancer. I’m also tagging @reibur1951 and @lighthouse68 who have some experience with immunotherapy and lung cancer and may be able to give you more insights.

@maraki, it’s very normal to want to “fix” things when your loved one is ill, but as one of our Mentors mentioned in another discussion, I sincerely encourage you to "try not to dwell too much on the future or the past – just stay in today. That is sometimes difficult but always useful!”
And, please lean on the Connect community for support, even if you just want to talk. We’re here and we’re listening.

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