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Living with lung cancer - Introduce yourself & come say hi

Posted by Colleen Young, Connect Director @colleenyoung, Mar 2, 2017

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 Colleen Young, Connect Director
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 5 12:34pm
In reply to @blinken "Hi Colleen, you might remember me from a few years ago in the Ostomy group. This..." + (show)
Profile picture for blinken @blinken

Hi Colleen, you might remember me from a few years ago in the Ostomy group. This time I'm joining the Lung Cancer group as my husband has had a CT scan which showed a large ( a bit smaller than a baseball) mass in his lung and also in his liver. This was done over 2 wks ago and have been waiting to get on the schedule for biopsy of the liver. Yesterday we were contacted by an oncologist who, fortunately will see him on Christmas Eve at a Hospital clinic only 12 miles from us. The MRI and PET scans will also be done there in the first week of January. The liver biopsy can't be done until 1/5/26 and 50-60 miles away. We are in our mid-eighties and freeway travel has become daunting for us. He also has macular degeneration so is unable to drive. The MRI is being done on his brain...the oncology scheduler told me they do these on all their cancer patients since the route of lung metastasis can take that route as well as to the liver. I had scheduled him to see our PCP because he was falling asleep on the sofa several times a day, sometimes sitting up. He had also complained about having to stop and rest several times walking through the woods during deer hunting. He has always been active and very strong. He has had a cough ever since I've known him in the 70's but in the last few months seemed to me to be much worse. He refused to see the doctor about it. I am scared beyond words that this is small-cell and has spread to the point of being untreatable. I am scared beyond words. This site has been a daily visit for me since my health issues in 2021/22. Has anyone on this site had positive outcomes with late stage treatment?

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@blinken, I just saw your message today. You and your husband have been through a lot this past weeks. Today, I read that you are on the road to get the liver biopsy done. Sending you positive vibes and a virtual hug to let you know I'm thinking of you.

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Colleen Young, Connect Director | @colleenyoung | Jan 5 12:31pm
In reply to @dmpstinson "My name is Denise Stinson and and had surgery in September with MD Anderson to remove..." + (show)
Profile picture for dmpstinson @dmpstinson

My name is Denise Stinson and and had surgery in September with MD Anderson to remove neural endocrine tumors for my lungs. The pathology report diagnosed me DIPNECH. I am looking for a specialist in this area. MD Anderson does not have anyone that specializes in DIPNECH . I was hoping to find a doctor at Mayo to help me with my diagnosis.

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@dmpstinson, yes Mayo Clinic has specialists in NETs, specializing in DIPNECH. As @lls8000 mentioned, there is a support group dedicated to NETs. You may wish to see the DIPNECH-specific disussions. For example:

- New DIPNECH diagnosis, need advice on doctors https://connect.mayoclinic.org/discussion/new-dipnech-diagnosis-need-advice-on-doctors/
- Anyone living long-term with DIPNECH on lungs?https://connect.mayoclinic.org/discussion/carcinoid-dyptik-on-lungs-neuroendocrine-does-anyone-have/

See all: https://connect.mayoclinic.org/search/discussions/

Did you contact Mayo Clinic? How are you doing?

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Monkey2025 | @bkwood | Jan 2 1:02pm

I was diagnosed approximately six months ago and it’s been a very long and busy journey. It may depend on how you react to any medication he finally puts you on. The first couple of medicines didn’t work well for me or last long so I just started my 4th yesterday. I’ll get treatments every three weeks. They do blood draws on a weekly basis, and various scans quarterly, or more frequently if they feel it’s necessary.
If your medication works well for you, the pace may slow down for you. I hope it does and will be praying for you.

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dave56pa | @dave56pa | Jan 1 9:27pm
In reply to @whitewolflpw "Hello everyone, My name is Lynn Stevens, and I just received my diagnosis of small cell..." + (show)
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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@whitewolflpw Sorry to hear of your diagnosis. My experience is yes it slows down after some initial tests and treatments. Maybe radiation and/or chemo depending on your specific situation. Then follow ups every 3or 6 months.

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macallan | @macallan | Jan 1 8:11am
In reply to @whitewolflpw "Hello everyone, My name is Lynn Stevens, and I just received my diagnosis of small cell..." + (show)
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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@whitewolflpw

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billcomiskey | @billcomiskey | Dec 31, 2025
In reply to @whitewolflpw "@billcomiskey You must be a very strong person to have gone through so much and still..." + (show)
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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whitewolflpw. @ LynnStevens | @whitewolflpw | Dec 31, 2025
In reply to @lls8000 "@whitewolflpw, Ahh ok! A month is still fast to process a life changing event like this!" + (show)
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@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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billcomiskey | @billcomiskey | Dec 31, 2025
In reply to @whitewolflpw "@billcomiskey You must be a very strong person to have gone through so much and still..." + (show)
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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karick | @karick | Dec 31, 2025
In reply to @lls8000 "Hello Karen @karick , The stress and trauma that you've endured is more than anyone should..." + (show)
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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billcomiskey | @billcomiskey | Dec 31, 2025
In reply to @lls8000 "Hi Bill @billcomiskey, Congrats on 20 years post diagnosis. Even if they haven't been easy, your..." + (show)
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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