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.

Profile picture for billcomiskey @billcomiskey

@whitewolflpw
My story is identical. 55 year smoker, quit at age 70 for Mayo treatment.
I am now 90 carry the small, 2 lb oxygen, go to the gym 3xwk and am Catholic attending daily Mass and in love with my wife.
I have had 5 different cancers so besides the lung cancer, I have had my epiglottis removed so I eat and drink by a PEG (hose) in my stomach wall. Throat is closed.
Recently had lymphoma nodes removed from my left upper chest
All 5 of my cancers treated at Mayo
So my dear, stay strong, stay busy if you can and any exercise you can do…do it
For certain….love your doctors
Bill
Boca Taton

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Hi Bill @billcomiskey, Congrats on 20 years post diagnosis. Even if they haven't been easy, your history and your message are inspirations for us all. I've been treated for two cancers, metastatic lung and early-stage breast. I'm not looking to add any more! You've experienced a lot. I'm glad that you've found good care. Thanks for sharing your story. Was your lung cancer small-cell?

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Profile picture for karick @karick

Hi, I'm Karen. I'll be 72 next week and married for 45yrs.
I was born with asthma. I started smoking at the age of 28. I quit in 2010, only to be diagnosed with COPD 7mo. later.
I had an extremely bad experience where my world literally blew up in 2021 because of multiple infidelities. Of course, I started smoking again. I endured finding out more and more things over the next 4yrs. It's only been 6mo. since my last 2 discoveries. So I've been trying to process and make any sense of that. I now suffer with C-PTSD.
I was able to quit smoking again last February 1st.
On December 1st, not even a month ago, I was diagnosed with Stage 1 non-small cell lung cancer. I've had the CT SCAN last Friday and I'm waiting for an appointment for the PET/CT SCAN. I haven't yet met with anyone yet, to discuss a treatment plan. I'm overwhelmed and very scared!
Every day, there's a battle of disbelief and mental anguish going on in my head over these two life changing events. A lot of days, I just sit and cry, not knowing how or what to feel.
I'm so sorry this is so long and in great depth 😪

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Hello Karen @karick , The stress and trauma that you've endured is more than anyone should have to bear. I hope you are getting help for the C-PTSD. The weight of this diagnosis is difficult on its own, but there is help available. Let those feelings out, cry when you need to. Just try not to stay in that low place for too long. Be honest with your doctors when they ask how you are doing. They can help with the emotional side of the diagnosis too.
It sounds like your cancer was identified at an early stage, which your future PET scan will help to confirm. It's normal to have all of the tests prior to determining the treatment plan. It's not easy to wait for appointments, but each scan or test helps fill in the clues to your story, and ultimately your specialized treatment plan. Are you working with a pulmonologist? They often drive the process in the beginning, and then they may pass you to another expert based on what these initial tests revel. Did you have a biopsy already?

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Profile picture for Lisa, Volunteer Mentor @lls8000

Hello Lynn, @whitewolflpw, Your doctors made a lot happen during a holiday week, wow! Your head is rightfully spinning. The beginning of the diagnosis process is overwhelming for all of us, and I'm guessing that you haven't had a chance to begin processing the psychological side of what's happening. Be sure to ask your doctors and nurses all of your questions. No question is too small. Ask them what your appointment schedule will look like, it has to be less than what you've seen during this past week. Take a breath and deal with one day at a time.
Do you have support from family or friends during this time? Are they keeping up with your whirlwind?

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@lls8000 I meant to tell you that my journey began the day before Thanksgiving I wasn't diagnosed with the small cell lung cancer until the day before Christmas Eve. So is actually about 6 weeks of a busy schedule that I've had so far. Much less condensed than a week. Whew thank goodness!!

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Profile picture for whitewolflpw.  @ LynnStevens @whitewolflpw

@lls8000 I meant to tell you that my journey began the day before Thanksgiving I wasn't diagnosed with the small cell lung cancer until the day before Christmas Eve. So is actually about 6 weeks of a busy schedule that I've had so far. Much less condensed than a week. Whew thank goodness!!

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@whitewolflpw, Ahh ok! A month is still fast to process a life changing event like this!

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Profile picture for Lisa, Volunteer Mentor @lls8000

Hi Bill @billcomiskey, Congrats on 20 years post diagnosis. Even if they haven't been easy, your history and your message are inspirations for us all. I've been treated for two cancers, metastatic lung and early-stage breast. I'm not looking to add any more! You've experienced a lot. I'm glad that you've found good care. Thanks for sharing your story. Was your lung cancer small-cell?

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I l really don’t know if it was small cell but I’ll find out and let you know,
I had just completed my final treatment for my prostate cancer when I was diagnosed so I let my wonder wife do the listening….she’s also my savior
We will pray that you get everything under control

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Profile picture for Lisa, Volunteer Mentor @lls8000

Hello Karen @karick , The stress and trauma that you've endured is more than anyone should have to bear. I hope you are getting help for the C-PTSD. The weight of this diagnosis is difficult on its own, but there is help available. Let those feelings out, cry when you need to. Just try not to stay in that low place for too long. Be honest with your doctors when they ask how you are doing. They can help with the emotional side of the diagnosis too.
It sounds like your cancer was identified at an early stage, which your future PET scan will help to confirm. It's normal to have all of the tests prior to determining the treatment plan. It's not easy to wait for appointments, but each scan or test helps fill in the clues to your story, and ultimately your specialized treatment plan. Are you working with a pulmonologist? They often drive the process in the beginning, and then they may pass you to another expert based on what these initial tests revel. Did you have a biopsy already?

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@lls8000 Hi Lisa, thank you for getting back to me so quickly.
I have received counseling but it was for my marriage.
I haven't talked to anyone about my cancer though. I have looked into trauma therapy, but the cost is outrageous! The closest one is 2.5 hrs away. The cancer clinic is 3 hrs away. I can't afford to do both (gas $$).
I was referred to a pulmonologist and she did a Bronchoscopy, December 1st, that's when I was informed that I have cancer. She did a much deeper one, December 8th and passed me off to the cancer clinic. She did a biopsy both times. Now I'm just waiting for further tests before meeting with an oncologist.

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Profile picture for whitewolflpw.  @ LynnStevens @whitewolflpw

@billcomiskey
You must be a very strong person to have gone through so much and still be so active and positive. I'm afraid I'm new at this game and like I said my head is spinning from everything that's going on it's hard to focus. It's a very emotional time and I want to be strong. I have great people being there for me supporting my new journey but I have to be strong for them or they worry so much.

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Thank you! I am not so strong, I don’t want to get worse and felt that laying around would definitely weaken me. So at times goto the gym and do very easy exercises. Just getting there was exercise at times. I am a type “A” so that helped. I also tried setting an example for my employees when working. Even tho over 20 years ago, it was still part of my nature.
It’s good to move around and any type exercise normally benefits

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Profile picture for Lisa, Volunteer Mentor @lls8000

@whitewolflpw, Ahh ok! A month is still fast to process a life changing event like this!

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@lls8000 you're absolutely right! My head still spinning and my body is exhausted, but I've got much more to do before I can relax.

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Profile picture for whitewolflpw.  @ LynnStevens @whitewolflpw

@billcomiskey
You must be a very strong person to have gone through so much and still be so active and positive. I'm afraid I'm new at this game and like I said my head is spinning from everything that's going on it's hard to focus. It's a very emotional time and I want to be strong. I have great people being there for me supporting my new journey but I have to be strong for them or they worry so much.

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@whitewolflpw
Modern medicine is awesome. Please realize and accept that. Also realize Your attitude can be a “powerhouse” for you.. Make it happen by who you’re with and what you do…..any kind of exercise. Mayo encouraged me to walk the hallways . My employees would visit and take turns being my walking companion, I’m sure you realize it can be home or away…..
Discuss this with your primary for their thoughts and ideas..

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Profile picture for whitewolflpw.  @ LynnStevens @whitewolflpw

Hello everyone,
My name is Lynn Stevens, and I just received my diagnosis of small cell lung cancer the day before Christmas Eve. I was a 50-year smoker before I quit 4 months ago. I'm using nicotine replacement patches to help me get pass the worst of the cravings. I've been to so many appointments; had procedures and surgery done; tons of scans, etc. now we're down to placing the chemo port next. My mind is in a spin and my body is exhausted. I told my Oncologist that I didn't want him to drag his feet when it came to coming to a diagnosis and treatment. Well he didn't drag his feet! He hit the floor running and he hasn't stopped for a breath yet!
I just need to know does it slow down at some point or does it stay like this until you beat it or it beats you?

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