1. < Lung Cancer
Moderator

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.

Linda | @llwortman | Mar 7, 2017
In reply to @merilee "Good idea Its been awhile since I've been on here at least posting on here I..." + (show)
@merilee

Good idea Its been awhile since I've been on here at least posting on here I read it from time to time . Diagnosed adenocarcinoma non small cell stage 2A 2015, I had surgery resection and chemo following . Months later lymph nodes in the mid chest were enlarged due to cancer . The doctor said she believed that that it was there earlier but never showed on any scans they called it a local reoccurrence . I then had radiation x30 and chemo . My last scan was in January and everything was stable some nodules are being watched but are very small , too small to biopsy . I constantly worry ..especially right before scan which is coming up mid April I'm just keeping my fingers crossed and praying that all is good . The doctor said this was caught fairly early which I believe is a good thing . They did mutation testing and from what I understand all checked were negative .. i don't know if that's good or bad but that's all I know . It seems your life kind of stops once you're diagnosed and everything is put on hold at least mine has.. I lived with my son through the treatment and I'm thinking about getting my own place again and possibly even working part-time ,I can no longer hide behind a diagnosis .Online support groups have helped me in many ways . But I am looking for a face-to-face support group also . Will keep reading and try to post more often. I'm
from Milwaukee Wisconsin... . If anyone else is .but if so would like to hear from you. Hope all are doing well .....Thanks

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You are in an amazing place with a brilliant team! I truly am inspired reading your journey together! What a great team you are! Bless you!
All my best
Linda

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jms7 | @jms7 | Mar 7, 2017
In reply to @llwortman "@bestcare Welcome to connect. Thank you for sharing your story with such openness. I am a..." + (show)
@llwortman

@bestcare
Welcome to connect. Thank you for sharing your story with such openness. I am a 9 year lung cancer survivor. I have an understanding about what you may feel. You are not alone. I hope by sharing I can help you find a way to rise above the fear.May I share a little about my story ?
Jan 2008most of my left lung and a 3cm tumor was removed just days after Mayo Clinic properly diagnosed my shoulder pain, annoying cough, night sweats...I have a feeling you understand?

I had these symptoms for at least two years, but my local docs found nothing. That was in the year 2008, when most everyone thought, Ih you got lung cancer? You smoked! Well I never smoked.
Now I can continue to "thank Mayo Clinic Teams", at all of my follow up apts for saving my life!...I am equally, deeply grateful to the Lung Cancer researchers who answered my question, Why did I get lung cancer?"
About three years ago I jumped at the chance to have my 3cm tumor tested. I had a mutated EGFR gene! I did not pass lung cancer to my children & I did not get this gene from my parents! Whew!
So I cannot wait for researchers to find what's behind the EGFR and other mutation, and one day find a cure.

Because of this cancer roller coaster,I have learned the importance of rising above the fear that may bring depression. So I go for walks, even in the rain & cold! I tell my body to relax when I breath deep! And I continue to blow cancer away! I've even found relief with complimentary medicine.
Now we have Connect! Great to meet you.
Linda
I

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Awesome!!! Your attitude will create the next great chapter in your life. Wow great story thank you! Life is a gift, and we have a choice to treat it that way. Loved your post. : )

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bestcare | @bestcare | Mar 10, 2017
In reply to @merilee "Good idea Its been awhile since I've been on here at least posting on here I..." + (show)
@merilee

Good idea Its been awhile since I've been on here at least posting on here I read it from time to time . Diagnosed adenocarcinoma non small cell stage 2A 2015, I had surgery resection and chemo following . Months later lymph nodes in the mid chest were enlarged due to cancer . The doctor said she believed that that it was there earlier but never showed on any scans they called it a local reoccurrence . I then had radiation x30 and chemo . My last scan was in January and everything was stable some nodules are being watched but are very small , too small to biopsy . I constantly worry ..especially right before scan which is coming up mid April I'm just keeping my fingers crossed and praying that all is good . The doctor said this was caught fairly early which I believe is a good thing . They did mutation testing and from what I understand all checked were negative .. i don't know if that's good or bad but that's all I know . It seems your life kind of stops once you're diagnosed and everything is put on hold at least mine has.. I lived with my son through the treatment and I'm thinking about getting my own place again and possibly even working part-time ,I can no longer hide behind a diagnosis .Online support groups have helped me in many ways . But I am looking for a face-to-face support group also . Will keep reading and try to post more often. I'm
from Milwaukee Wisconsin... . If anyone else is .but if so would like to hear from you. Hope all are doing well .....Thanks

Jump to this post

Colleen, Just so you know, I immediately went to my lab results and found no mention of HER2.  All the other factors were tested and I am negative.  But I am bringing this information from burrkay with me and plan to inquire about it.  High priority on my Question List.Thank you for your inquiry re: burrkays info.  I appreciate it and am grateful for people like burrkay to read and pass on any info or experience they may have had.  I will gladly let you know the results of the visit and the Drs. response.  Thank you again.bestcare

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livethrufocus | @livethrufocus | Mar 24, 2017

Would like to view some of the videos on this topic but I need some text as well. Are there any with text available at the present time?

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2 replies
Linda | @llwortman | Mar 24, 2017

Dear liv:
MayoClinic has some Lung cancer interviews with visuals that have been helpful for me.
Dr Stephen Cassivi -Thorasic Surgeon, and
Dr David Midthun -Pulmonologist &
Dr Ping Yang - Lung Cancer Research...who also wrote a brilliant 19 page research paper that was posted Feb 2016.
We are blessed th have such brilliant and dedicated and compassionate human beings doing this amazing work!
Let me know if this was helpful? Bless you! Glad you decided to CONNECT!
linda

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merilee | @merilee | Mar 24, 2017

All good here, i have been trying to start walking again...not long distances but at least a few blocks...I have another scan coming up a week from Monday..I get so scared and nervous about it..Its like i put things on hold till i have it..crazy right......Think i am the only one here from Wisconsin.?? Hope is well with you....

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6 replies
Linda | @llwortman | Mar 24, 2017
In reply to @merilee "All good here, i have been trying to start walking again...not long distances but at least..." + (show)
@merilee

All good here, i have been trying to start walking again...not long distances but at least a few blocks...I have another scan coming up a week from Monday..I get so scared and nervous about it..Its like i put things on hold till i have it..crazy right......Think i am the only one here from Wisconsin.?? Hope is well with you....

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Keep walking girl! You are going thru perhaps some of the same  things I have...one day st a time, look up at the sky and the sun will shine on you. Keep putting one step in front of the other and breath deep! You are NOT alone. You deserve a BiG HuG! Let's keep connected & never give up;-)linda 

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 25, 2017
In reply to @merilee "All good here, i have been trying to start walking again...not long distances but at least..." + (show)
@merilee

All good here, i have been trying to start walking again...not long distances but at least a few blocks...I have another scan coming up a week from Monday..I get so scared and nervous about it..Its like i put things on hold till i have it..crazy right......Think i am the only one here from Wisconsin.?? Hope is well with you....

Jump to this post

Good for you @merilee for getting walking again. Length of distance is all relative. A long distance is one step further than yesterday and knowing when it is enough. I hope you'll share the things that spring starts to show you as you go on your walks. Yes, spring is coming even to Wisconsin. 🙂

Being nervous about an upcoming test or scan is totally normal. Did you know that patients coined the phrase "scanxiety"? Have you ever heard anyone say that?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 25, 2017
In reply to @livethrufocus "Would like to view some of the videos on this topic but I need some text..." + (show)
@livethrufocus

Would like to view some of the videos on this topic but I need some text as well. Are there any with text available at the present time?

Jump to this post

Hi @livethrufocus. I'd like to add my welcome to the Lung Cancer group.
Here is a library of Mayo Clinic videos related to lung cancer. https://www.youtube.com/user/mayoclinic/search?query=lung+cancer Included are patient stories, videos from experts about screening, treatment, research and more.

i will gladly find articles for you as well. What aspect of lung cancer are you interested in? Do you have lung cancer?
We look forward to getting to know more about you.

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Linda | @llwortman | Mar 25, 2017
In reply to @merilee "All good here, i have been trying to start walking again...not long distances but at least..." + (show)
@merilee

All good here, i have been trying to start walking again...not long distances but at least a few blocks...I have another scan coming up a week from Monday..I get so scared and nervous about it..Its like i put things on hold till i have it..crazy right......Think i am the only one here from Wisconsin.?? Hope is well with you....

Jump to this post

"Scanxiety" is my new favorite word!
How can we get spell check to accept it?
You both deserve a hug!
linda

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