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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.

Profile picture for pb50
pb50 | @pb50 | Dec 15, 2023
In reply to @spikeb1 "I did have a biopsy but not sure if they did genetic testing. Is it possible..." + (show)
Profile picture for spikeb1 @spikeb1

I did have a biopsy but not sure if they did genetic testing. Is it possible that they wait for staging to do that. I had nothing show up in PET Scan and all nodes removed during surgery were negative. So how important is it that it be done now? If I ever have a reoccurrence, I suppose it could be done then?

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I didn’t have an oncologist and my surgeon took out a 1.5cm tumor, tested modes and margins and everything was clean. So I didn’t do any DNA evaluation - didn’t even know to ask the question then. But the truth is I watched this one in annual ct
Screenings go from 6 to 14mm over four years. So if I were to see another one, I won’t have surgery again. Therefore I don’t care about the dna 🙂

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1 reply
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spikeb1 | @spikeb1 | Dec 15, 2023
In reply to @merpreb "@spikeb1- Good morning. Did you have a biopsy? Perhaps call the surgeon's office that did the..." + (show)
Profile picture for Merry, Alumni Mentor @merpreb

@spikeb1- Good morning. Did you have a biopsy? Perhaps call the surgeon's office that did the biopsy and ask if genetic testing was done. Your sample should still be around and they can still test it. That's how mine was done.

Merry

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I will check with them though. Thanks!

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spikeb1 | @spikeb1 | Dec 15, 2023
In reply to @merpreb "@spikeb1- Good morning. Did you have a biopsy? Perhaps call the surgeon's office that did the..." + (show)
Profile picture for Merry, Alumni Mentor @merpreb

@spikeb1- Good morning. Did you have a biopsy? Perhaps call the surgeon's office that did the biopsy and ask if genetic testing was done. Your sample should still be around and they can still test it. That's how mine was done.

Merry

Jump to this post

I did have a biopsy but not sure if they did genetic testing. Is it possible that they wait for staging to do that. I had nothing show up in PET Scan and all nodes removed during surgery were negative. So how important is it that it be done now? If I ever have a reoccurrence, I suppose it could be done then?

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2 replies
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cmcguire10 | @cmcguire10 | Dec 15, 2023
In reply to @easydoesit1928 "I would like to give hope to lung cancer patients. I was diagnosed in 2017 and..." + (show)
Profile picture for easydoesit1928 @easydoesit1928

I would like to give hope to lung cancer patients. I was diagnosed in 2017 and am still here and plan Christmas with my family. I was given first Tarceva and now taking Tagrisso. Thank you.

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easydoesit1928- So Honestly Happy for you and your family! Any of us fighting lung cancer understand what a wonderful milestone that is! Hope you and your family enjoy a Beautiful Christmas Season! And Many many more years!
Cindy

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Merry, Alumni Mentor | @merpreb | Dec 15, 2023
In reply to @spikeb1 "I see many references to genetic mutations. I had a left upper lobectomy a year ago..." + (show)
Profile picture for spikeb1 @spikeb1

I see many references to genetic mutations. I had a left upper lobectomy a year ago but there was no mention of genetic testing. My stage was 1a.

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@spikeb1- Good morning. Did you have a biopsy? Perhaps call the surgeon's office that did the biopsy and ask if genetic testing was done. Your sample should still be around and they can still test it. That's how mine was done.

Merry

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2 replies
Profile picture for Merry, Alumni Mentor
Merry, Alumni Mentor | @merpreb | Dec 15, 2023
In reply to @jessicamc "I am having surgery in Jan 2024 for a 13 mm typical neuroendocrine tumor. Dr. said..." + (show)
Profile picture for jessicamc @jessicamc

I am having surgery in Jan 2024 for a 13 mm typical neuroendocrine tumor. Dr. said will probably remove 10% of left lung. I’m female, 77, walk 30 minutes minimum at the Y on indoor track 5x a week, do another 30 minutes on rowing or elliptical. I was told it will be robotic and probably discharged two days after surgery. I live alone and am considering employing a caregiver. I understand we are all different, but am interested in a guesstimate of how many days I may need someone to stay with me.

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@jessicamc- I'm unsure if you received my message as my computer acted up when I hit print- of course. I meant to share these links with you.
https://www.mayoclinic.org/diseases-conditions/neuroendocrine-tumors/symptoms-causes/syc-20354132
https://www.netcancerawareness.org/what-is-net-cancer/
To answer your question concerning home care, I bet you would need someone to help out for a week. You can then decide if you want to keep that person on or not.

One of my closest friends just celebrated her fifth anniversary from surgery. She is our age and doing extremely well. She takes care of a needy son and a needy husband.

Merry

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spikeb1 | @spikeb1 | Dec 15, 2023
In reply to @lls8000 "Hi again @loriwt, I'm glad you found us. There are certainly other members here with gene..." + (show)
Profile picture for Lisa, Volunteer Mentor @lls8000

Hi again @loriwt, I'm glad you found us. There are certainly other members here with gene mutated cancers; EGFR, ALK. Many gene mutation lung patients are found at later stages. Were you diagnosed at a late stage? Did you go straight to the retevmo, or did you have other treatments/surgery?

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I see many references to genetic mutations. I had a left upper lobectomy a year ago but there was no mention of genetic testing. My stage was 1a.

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1 reply
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shirleyod | @shirleyod | Dec 14, 2023

I was diagnosed with stage 3 lung cancer in October of 2022. I have had 6 rounds of chemotherapy and 30 radiation treatments that ended in December of 22. I have been on immunotherapy (Infinzi) starting in January 2023 and should complete it at the end of the year. I have a CT scan 12/15/2023 and so far the previous scans have shown no symptoms of cancer.

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2 replies
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Mentor
Lisa, Volunteer Mentor | @lls8000 | Dec 14, 2023
In reply to @easydoesit1928 "I would like to give hope to lung cancer patients. I was diagnosed in 2017 and..." + (show)
Profile picture for easydoesit1928 @easydoesit1928

I would like to give hope to lung cancer patients. I was diagnosed in 2017 and am still here and plan Christmas with my family. I was given first Tarceva and now taking Tagrisso. Thank you.

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@easydoesit1928, that’s great news! There are more and more treatments available each year and people are living longer with lung cancer. Thanks for sharing.

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pb50 | @pb50 | Dec 14, 2023

Hi Lisa.
For the benefit of others, I am living with after effect of lung cancer. I had surgery for a 1.5 cm mucinous adenocarcinoma in late May. The surgeon took the left lower lobe after receiving pathology report that it was malignant. All margins and nodes were clean, so stage PT1cPN0.
I have persistent rib/diaphragm pain with no insight as to why beyond “these things happen”.

That’s the short version 🙂

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