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.

pb50 | @pb50 | Dec 17, 2023
In reply to @bernl "I was diagnosed with stage 1 lung cancer .. had a lobectomy upper right lobe. Lymph..." + (show)
@bernl

I was diagnosed with stage 1 lung cancer .. had a lobectomy upper right lobe. Lymph node are clear . Had surgery 2 1/2 wks ago .. waiting to see post op surgeon and oncologist.. the hardest thing for me was unable to understand what was happening to me.. No one to talk to that understood what I was feeling and going through. The waiting time for all test, biopsies and doctor appointments were like a life time to me.. Now the thought of it returning stays on your mind.. there is no support group out there for you to get help mentally.. I am positive most of the time .. need other to talk to that understand..

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Hi. You are in a good place here - There are a lot of us here who understand what you have been and are still going through. I had a 1.5cm mucinous Adenocarcinoma removed 7 months ago in a left lower lobectomy. Margins and lymph nodes were all clear.
So you and I are very very lucky.
How was yours discovered? Mine was picked up 5 yrs ago in a routine screening. It was only 6mm then. By last April it was 14mm so they recommended removal. I will have CTs every six months for five years so I don’t really worry about it returning without me being aware.

What kind of cancer did yours turn out to be?

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2 replies
bernl | @bernl | Dec 17, 2023
In reply to @pb50 "Hi. You are in a good place here - There are a lot of us here..." + (show)
@pb50

Hi. You are in a good place here - There are a lot of us here who understand what you have been and are still going through. I had a 1.5cm mucinous Adenocarcinoma removed 7 months ago in a left lower lobectomy. Margins and lymph nodes were all clear.
So you and I are very very lucky.
How was yours discovered? Mine was picked up 5 yrs ago in a routine screening. It was only 6mm then. By last April it was 14mm so they recommended removal. I will have CTs every six months for five years so I don’t really worry about it returning without me being aware.

What kind of cancer did yours turn out to be?

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Thank you sooooo much for responding so kindly .. mind was picked up at a wellness visit when I asked for a chest x-ray. 2.1cm same type of tumor as yours. Yes , as you said , we are very lucky it seems it has been caught early .. just being able to communicate with someone that understands is a comfort.. thank you again . I’ll keep you posted on my doc visit and keep me posted on yours or if you just need to talk ..

Bernadette

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Mentor
Lisa, Volunteer Mentor | @lls8000 | Dec 17, 2023
In reply to @shirleyod "I was diagnosed with stage 3 lung cancer in October of 2022. I have had 6..." + (show)
@shirleyod

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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@shirleyod, I'm glad that you are doing well, and hope your latest scan looked promising too! It's nice to hear good news, hoping for a better 2024 for you.

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Mentor
Lisa, Volunteer Mentor | @lls8000 | Dec 17, 2023
In reply to @spikeb1 "I wasn’t aware that targeted therapy was so prevalent. I will ask at my next appointment..." + (show)
@spikeb1

I wasn’t aware that targeted therapy was so prevalent. I will ask at my next appointment but if not done, won’t request it. If I have a reoccurrence, would have it then just to see. But heck, I’m already 73.

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Hi @spikeb1. There is much hope in the lung cancer world. With new findings and advances, we are all given better outlooks. I have one of the gene mutations; ALK. The mutations are usually (but not always) found in 'younger' patients that have very few risk factors for lung cancer. Anyone with lungs can get lung cancer. Testing for biomarkers/mutations is becoming more standard, and some states are mandating that insurance companies cover the cost.
I'm glad you are doing well, post-surgery and hopefully you are free and clear now!

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Mentor
Lisa, Volunteer Mentor | @lls8000 | Dec 17, 2023
In reply to @soupycampbell "Just an update on my lung cancer. As you know from previous posts I had said..." + (show)
@soupycampbell

Just an update on my lung cancer. As you know from previous posts I had said I did not want chemo or radiation because I’m healthy and just wanted to enjoy my life. Well, I decided to go with 5 treatments of lower dose radiation and have just got results of the latest scan. The one larger on the upper lung has actually shrunk some so good news. Also in the last months I’ve had another on my lower back and now from this scan one on my higher thigh. They’re small so no worries. I’m now good to next scan in June. I’m still travelling some with my daughter and walking as much as I can depending on weather. Life is good. Merry Christmas to all and praying for all who needs it! 🙏💕
Joan Campbell

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Hi Joan (@soupycampbell), It's so good to hear from you. I'm glad that you are doing well and are able to be out enjoying your life the way that you choose. I wish you the best, and hope you continue to travel and do the things that bring you joy. Take care, and venture onward...

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Mentor
Lisa, Volunteer Mentor | @lls8000 | Dec 17, 2023
In reply to @bernl "Thank you sooooo much for responding so kindly .. mind was picked up at a wellness..." + (show)
@bernl

Thank you sooooo much for responding so kindly .. mind was picked up at a wellness visit when I asked for a chest x-ray. 2.1cm same type of tumor as yours. Yes , as you said , we are very lucky it seems it has been caught early .. just being able to communicate with someone that understands is a comfort.. thank you again . I’ll keep you posted on my doc visit and keep me posted on yours or if you just need to talk ..

Bernadette

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Hi Bernadette (@bernl), The diagnosis is usually quite a shock for all of us. I'm glad you were proactive and asked for the chest x-ray. If you didn't qualify for CT lung screening, the x-ray was a blessing that caught the tumor early. I hope your surgery recovery is manageable, and that you have the physical assistance that you need. The emotional support can be difficult. There are many people here on Mayo Connect who have been through similar circumstances, so feel safe to share what you are going through. Your primary care provider or oncologist may have some good suggestions on resources for dealing with the mental health side of the diagnosis too. Is your oncology appointment coming up?

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1 reply
bernl | @bernl | Dec 17, 2023
In reply to @lls8000 "Hi Bernadette (@bernl), The diagnosis is usually quite a shock for all of us. I'm glad..." + (show)
@lls8000

Hi Bernadette (@bernl), The diagnosis is usually quite a shock for all of us. I'm glad you were proactive and asked for the chest x-ray. If you didn't qualify for CT lung screening, the x-ray was a blessing that caught the tumor early. I hope your surgery recovery is manageable, and that you have the physical assistance that you need. The emotional support can be difficult. There are many people here on Mayo Connect who have been through similar circumstances, so feel safe to share what you are going through. Your primary care provider or oncologist may have some good suggestions on resources for dealing with the mental health side of the diagnosis too. Is your oncology appointment coming up?

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I see the surgeon on the 20th then I’ll have an appointment for the oncologist after that.. Thank you for your kind words and for reaching out to me .. I am progressing well , get short of breath and my pain is definitely manageable.. just taking Tylenol . I spoke with my regular MD about support groups and they referred me to a therapist. I really wanted to talk to people who were experiencing the same medical issues as myself.. so happy I found this site ..

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Merry, Alumni Mentor | @merpreb | Dec 17, 2023
In reply to @spikeb1 "I did have a biopsy but not sure if they did genetic testing. Is it possible..." + (show)
@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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Spike- It's up to you. Usually, DNA will stay the same if you have the same type of cancer again. I do not know if it changes with a different kind of cancer. I've had two types of lung cancer, and there wasn't a DNA test for the first. I don't know if they were doing them in 1981.

Have you been told if you will need any treatment?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 17, 2023
In reply to @shirleyod "I was diagnosed with stage 3 lung cancer in October of 2022. I have had 6..." + (show)
@shirleyod

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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Hi @shirleyod, I look forward to your update when you get the results of your scan. How have you been doing on Infinzi?

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 17, 2023
In reply to @easydoesit1928 "I would like to give hope to lung cancer patients. I was diagnosed in 2017 and..." + (show)
@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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I'd like to add my welcome, @easydoesit1928. Your post definitely gives hope.

There are several members taking Tagrisso who would benefit from your experience. See these various discussions: https://connect.mayoclinic.org/group/lung-cancer/?search=Tagrisso&index=discussions

Perhaps you have some tips to offer.

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