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.

Merry, Alumni Mentor | @merpreb | Jun 11, 2022
In reply to @felix536 "Hi, I have stage 1 lung cancer, lobectomy of lower left lobe in March. Had pluerul..." + (show)
@felix536

Hi,
I have stage 1 lung cancer, lobectomy of lower left lobe in March. Had pluerul effusion and pneumonia following surgery and a chest tube for two weeks. Other than that have recovered well but can't help thinking about the possibility of recurrence. The thought of recurrence to liver, brain or bones is frightening. I am 62 years old and feel fortunate that it was caught early however everything I read points to 30% recurrence rate. Any of you 5 year survivors without recurrence. I wish everyone the very best with their own situations.

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Welcome! Anyone who has had cancer fears recurrences. It seems to come with the territory. Please don't read statistics because there is really no way to tell who will have one and who won't.

I am a 24+ survivor. I have had many recurrences and I'm here to answer your question. You will drive yourself nuts thinking about it. Think about what you are going to do tomorrow or next week!

What do you think?

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felix536 | @felix536 | Jun 10, 2022
In reply to @colleenyoung "Hi @llwortman @burrkay @alicantina1 @merilee @alvinw @shortshot80 @mryzuch @amws @pearlgee @cheris @annette1 @cheris @windwalker @lesbatts @major..." + (show)
@colleenyoung

Hi @llwortman @burrkay @alicantina1 @merilee @alvinw @shortshot80 @mryzuch @amws @pearlgee @cheris @annette1 @cheris @windwalker @lesbatts @major @bestcare and @sistergoldenhair

I'd like to invite you to the new group dedicated to discussions about lung cancer. It's a space where we can ask questions, share tips and learn from each other. Whether you in treatment or caring for someone with lung cancer, or you're a lung cancer survivor, please join us.

Pull up a chair and tell us a bit about yourself.

Jump to this post

Hi,
I have stage 1 lung cancer, lobectomy of lower left lobe in March. Had pluerul effusion and pneumonia following surgery and a chest tube for two weeks. Other than that have recovered well but can't help thinking about the possibility of recurrence. The thought of recurrence to liver, brain or bones is frightening. I am 62 years old and feel fortunate that it was caught early however everything I read points to 30% recurrence rate. Any of you 5 year survivors without recurrence. I wish everyone the very best with their own situations.

REPLY
1 reply
kamoto | @kamoto | Jun 6, 2022

Thanks all. Talked to Mayo last week, they downloaded the records, and I'm now in analysis by the Oncology team where they will assign me to the right Doctor. Was hoping to get that assignment Friday, but nothing yet. Saw a Merck trial in the news today, where 100% of participants had their tumors melt away. 1st time ever they said.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 5, 2022
In reply to @kamoto "Hi Colleen. Diagnosed with a 3.2 CM adenocarcinoma of the right lung. MRI also shows a..." + (show)
@kamoto

Hi Colleen. Diagnosed with a 3.2 CM adenocarcinoma of the right lung. MRI also shows a 9mm nodule on the brain. PET scan show vertebra L8 cancerous, left rib is cancerous, esophagus has cancer, and nasal cavity as well. I’m in MT and tried to sign up for a Mayo appointment but haven’t heard back from them. Not hopeful anyone can stop this freight train given the spread. But, let’s see. Thanks

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@kamoto, I hope you have heard from Mayo Clinic since you last posted. If not, I encourage to contact them to find out the status of your request for an appointment.

How are you doing?

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sierracharlie | @sierracharlie | Jun 5, 2022
In reply to @kamoto "Hi Colleen. Diagnosed with a 3.2 CM adenocarcinoma of the right lung. MRI also shows a..." + (show)
@kamoto

Hi Colleen. Diagnosed with a 3.2 CM adenocarcinoma of the right lung. MRI also shows a 9mm nodule on the brain. PET scan show vertebra L8 cancerous, left rib is cancerous, esophagus has cancer, and nasal cavity as well. I’m in MT and tried to sign up for a Mayo appointment but haven’t heard back from them. Not hopeful anyone can stop this freight train given the spread. But, let’s see. Thanks

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Hi kamato, just wanted you to know you are not alone. Mayo found two large tumors in my right lung and another butting up against my heart. Like almost everyone else, I thought this was fatal.

But it's not. We are all similar but we are also all different. Each patient has a very specific program for their specific need. Your treatment will be different than mine, for sure.

I think the biggest complaint from patients is the long time it takes for treatment. I know that was my case and the same with @rlogan. For me, it was diagnosis in July, surgery in November, finally began chemo and radiation in January. I felt that every day delayed was only helping these tumors to grow larger.

You have an awesome support group here. I read these comments every morning and they do help to give me strength. Mayo has outstanding videos for cancer that I highly recommend. The one for lung cancer covers virtually everything a patient needs to know, from treatment to social assistance. Please feel free to post all your questions here. I guarantee that you will get a prompt response.

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zadah7 | @zadah7 | Jun 4, 2022
In reply to @kamoto "Hi Colleen. Diagnosed with a 3.2 CM adenocarcinoma of the right lung. MRI also shows a..." + (show)
@kamoto

Hi Colleen. Diagnosed with a 3.2 CM adenocarcinoma of the right lung. MRI also shows a 9mm nodule on the brain. PET scan show vertebra L8 cancerous, left rib is cancerous, esophagus has cancer, and nasal cavity as well. I’m in MT and tried to sign up for a Mayo appointment but haven’t heard back from them. Not hopeful anyone can stop this freight train given the spread. But, let’s see. Thanks

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Oh, I'm sorry, I just realized that Colleen is the moderator. (new to this!) I responded to Colleen but mean to respond kamoto.

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zadah7 | @zadah7 | Jun 4, 2022
In reply to @kamoto "Hi Colleen. Diagnosed with a 3.2 CM adenocarcinoma of the right lung. MRI also shows a..." + (show)
@kamoto

Hi Colleen. Diagnosed with a 3.2 CM adenocarcinoma of the right lung. MRI also shows a 9mm nodule on the brain. PET scan show vertebra L8 cancerous, left rib is cancerous, esophagus has cancer, and nasal cavity as well. I’m in MT and tried to sign up for a Mayo appointment but haven’t heard back from them. Not hopeful anyone can stop this freight train given the spread. But, let’s see. Thanks

Jump to this post

Hi Colleen, God love you! Don't give up and don't give up on the Mayo Clinic. They are phenomenal!!! They are nothing like you've ever seen. Call them. They should get you an appointment as soon as they possibly can. I am praying for you and hope to hear positive updates from you. God speed.

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kamoto | @kamoto | May 31, 2022
In reply to @colleenyoung "Hi @llwortman @burrkay @alicantina1 @merilee @alvinw @shortshot80 @mryzuch @amws @pearlgee @cheris @annette1 @cheris @windwalker @lesbatts @major..." + (show)
@colleenyoung

Hi @llwortman @burrkay @alicantina1 @merilee @alvinw @shortshot80 @mryzuch @amws @pearlgee @cheris @annette1 @cheris @windwalker @lesbatts @major @bestcare and @sistergoldenhair

I'd like to invite you to the new group dedicated to discussions about lung cancer. It's a space where we can ask questions, share tips and learn from each other. Whether you in treatment or caring for someone with lung cancer, or you're a lung cancer survivor, please join us.

Pull up a chair and tell us a bit about yourself.

Jump to this post

Hi Colleen. Diagnosed with a 3.2 CM adenocarcinoma of the right lung. MRI also shows a 9mm nodule on the brain. PET scan show vertebra L8 cancerous, left rib is cancerous, esophagus has cancer, and nasal cavity as well. I’m in MT and tried to sign up for a Mayo appointment but haven’t heard back from them. Not hopeful anyone can stop this freight train given the spread. But, let’s see. Thanks

REPLY
4 replies
callalloo | @callalloo | Apr 27, 2022
In reply to @merpreb "@callalloo- Good morning, it's nice to meet you. What a wonderful story. It gave me goosebumps!..." + (show)
@merpreb

@callalloo- Good morning, it's nice to meet you. What a wonderful story. It gave me goosebumps! The doctors must have done some research after your mom proved them wrong!

Thank you for sharing this story and for visiting the Lung Cancer group. And your story was worth a million smiles! Don't you?

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I'm not certain that anyone told the doctors about the forbidden food sneaked into her hospital room :-). My mother had a professor in med school that stressed never underestimating the body's ability to heal if given the right environment. I think that that made her take the craving for a food that she ordinarily disliked seriously.

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Merry, Alumni Mentor | @merpreb | Apr 27, 2022
In reply to @callalloo "For what it's worth, my mother was in the hospital and dying. A priest had said..." + (show)
@callalloo

For what it's worth, my mother was in the hospital and dying. A priest had said last rites, my brother and I were allowed to visit to sat good-bye (minor children weren't allowed otherwise at the time) and I was too young to really understand what was happening. My mother begged my father to go to the cheap burger hole-in-the-wall near our marina and buy a bagful of burgers with tons of fried onions. She hadn't been able to keep any food down for over a week and he was afraid to do this. But the other relatives said that, well, it's her dying wish and phooey on what the doctors would think.

My dad sneaked the 'sliders' past the nursing station under his coat. My mom ate one, ate another a half hour later, ate the rest of the fried onions before the night nurse came on duty.

My mom was released from the hospital a few weeks later and lived another 30+ years. She was a doctor and figured her body might be craving that meal for a reason.

She later suspected that maybe the sulfur from the onions, sugar in the ketchup and salt and oil some rehydrated her or kicked some imbalance back into stasis.

In my family, paying attention to what the body is trying to tell us became a mantra. I don't always pay attention but pay a price when I don't. And my mom's not exactly 'last meal' would never have been medical protocol. But it worked!

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@callalloo- Good morning, it's nice to meet you. What a wonderful story. It gave me goosebumps! The doctors must have done some research after your mom proved them wrong!

Thank you for sharing this story and for visiting the Lung Cancer group. And your story was worth a million smiles! Don't you?

REPLY
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