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.

@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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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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@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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Hi Lisa! I was diagnosed as Stage IV and went directly to targeted therapy with no other treatments.

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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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@loriwt

Hello! I'm Lori and I was diagnosed with NSCLC RET+ in June 2022 and started targeted therapy (Retevmo) in July 2022. Anyone else RET+ and on Retevmo or similar?

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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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Hello! I'm Lori and I was diagnosed with NSCLC RET+ in June 2022 and started targeted therapy (Retevmo) in July 2022. Anyone else RET+ and on Retevmo or similar?

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@jessicamc

Thank you for the links. What is the pillow used for?

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The pillow is to hold against your incision area when you cough. The pressure helps with muscle spasm. There were none on the floor when I was in hospital so my nurse nabbed one from the cardiac surgery unit 🙂

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@colleenyoung

Jessica, you got some helpful responses from @pb50 and @spikeb1. You may also appreciate the tips shared in this related discussion:

- Robotic Lobectomy: What can I expect? What is recovery like https://connect.mayoclinic.org/discussion/hello-from-the-bluegrass-state/

At Mayo Clinic, they give lung surgery patients lung pillows that are really helpful. Micheal, @corgimenow's husband is showing off his pillow post surgery here:

- My husband had lobectomy surgery: Mayo was wonderful! https://connect.mayoclinic.org/discussion/mayo-was-wonderful/

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Thank you for the links. What is the pillow used for?

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@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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Jessica, you got some helpful responses from @pb50 and @spikeb1. You may also appreciate the tips shared in this related discussion:

- Robotic Lobectomy: What can I expect? What is recovery like https://connect.mayoclinic.org/discussion/hello-from-the-bluegrass-state/

At Mayo Clinic, they give lung surgery patients lung pillows that are really helpful. Micheal, @corgimenow's husband is showing off his pillow post surgery here:

- My husband had lobectomy surgery: Mayo was wonderful! https://connect.mayoclinic.org/discussion/mayo-was-wonderful/

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@pb50

I went home on day 5. I had prepared for food that I could open and manage with one hand because I (erroneously) assumed I would have pain in the arm on that side - but no such issue.

I had prepared some meals and froze them and bought frozen entrees I enjoy and squeeze peanut butter and ice cream
And having meals like egg cups and chicken pie etc already made was helpful. Also I would have band aids and maybe a few sterile bandages and tape for your incision.
Oh. You may ooze out of the incision. Put old sheets on your bed before you go, and a towel under the sheet where you will lie - because that fluid will stain linens and your mattress cover. Ditto old pajamas.

If your shower has a handheld attachment that makes it easier to avoid the wound when shampooing, etc. get a baseball cap or bandana because your hair will be a fright for a while. 🙂

On balance, I didn’t really have an issue caring for myself.

Best of luck!!

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That’s a lot of great ideas

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