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.

@kanaazpereira

Hi @testlady,

You may notice that I moved your message to this discussion on living with lung cancer I did this because I thought it would be beneficial for you to connect with the members in this discussion, and I hope they will join in with more insight or information that might help.

@testlady, do you know what type of colitis you may have?

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My blood work showed no infection. My stool cults showed no bacteria. I do not have Cdif. I have been told this is a result of the Opdivo. My PET scan report stated "wall thickening of the colon w submucosal edema and stranding in the adjacent fat suspicious for pancolitis."

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@testlady

I am so despondent. My Opdivo infusions have been very successful; however, I have developed colitus and my infusions have been postponed until it is resolved. I have fear and anxiety because of the lack of treatment opportunities that directly affect my lung cancer. All the healthful eating I have done must cease because it affects colitus. The lectures about this is just a bump in the road are not helping. I don't know how to handle this setback.

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Thank you. Your such means a great deal.

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Welcome.That is how my first lung cancer was found. I had to have an Xray for an injury. Thank goodness. it was a very early, but virulent type of adenocarcinoma. Make sure you have follow-up CT scans at least once a year!

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Thanks to John for my invitation to join.
I was invited to join a Mayo program for smokers that had quit smoking (almost 6 years)
It was one of the chest x-rays that the cancer was found. Thank you Mayo Clinic!
They took a small pie wedge from my lower left lobe and I thing all is good.
I was only in the hospital for 1 1/2 days and went back to work after 3 days (Amazing)
Thanks again MAYO

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@testlady

I am so despondent. My Opdivo infusions have been very successful; however, I have developed colitus and my infusions have been postponed until it is resolved. I have fear and anxiety because of the lack of treatment opportunities that directly affect my lung cancer. All the healthful eating I have done must cease because it affects colitus. The lectures about this is just a bump in the road are not helping. I don't know how to handle this setback.

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I feel for you! One thing you might try to keep in mind is that there is no one universal 'healthful eating' program. So now you are doing healthful eating for your colitus and it is still putting good nutritious food into your body to help you to be strong and healthy. I hope it will be under control soon so that you can begin your infusions again.

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Hi @testlady,

You may notice that I moved your message to this discussion on living with lung cancer I did this because I thought it would be beneficial for you to connect with the members in this discussion, and I hope they will join in with more insight or information that might help.

@testlady, do you know what type of colitis you may have?

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I am so despondent. My Opdivo infusions have been very successful; however, I have developed colitus and my infusions have been postponed until it is resolved. I have fear and anxiety because of the lack of treatment opportunities that directly affect my lung cancer. All the healthful eating I have done must cease because it affects colitus. The lectures about this is just a bump in the road are not helping. I don't know how to handle this setback.

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@cindylb

Hello all, I just joined this group. I am a breast cancer survivor of four years total (Stage 0 and Stage 1). Just as I got back on my feet my husband was diagnosed with COPD and we are now going through the tests to determine his exact lung cancer status. The support I have received as part of the breast cancer group on this site has been invaluable and now I'm hoping to find support and information as a caregiver for my husband. My husband has been part of an on-going lung cancer study (CT scans) for four years. He is an ex-smoker. His last scan in January showed a mass that they've been watching for a year that during the last six months doubled. His biopsy showed a cancer from the upper GI tract (not lung cancer specifically). However, with some research I discovered a lung cancer that shows as upper GI in the pathology called Pulmonary Enteric Adenocarcinoma. Our doctors are considering this but also requesting additional tests. His PET scan and brain MRI show no cancer elsewhere in his body but there is a lymph node in the lung that showed possible cancer in the center of his lung, near the tumor but also near the esophagus. Our next step is an Endoscopy next week. The biopsy of that lymph node will give us and the doctors more information. Once we have those results we'll meet with his oncologist to discuss the test results and treatment options. So far they are only saying Chemotherapy, which my husband is very hesitant to do. Support, thoughts, encouragement welcome. I look forward to reading your posts and gaining some understanding and insight into treatments and outcomes on this. We are finding this process much more complicated than my breast cancer journey. Best to everyone.

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Thanks Cindy- keep asking those questions...don’t take for granted that the doc knows all the answers, and ask your oncologist if a molecular study should be done to make sure you husband is getting the right treatment.
Today, they are discovering new cancer treatments continuously! So keep the faith!
God bless you both...

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@burrkay

Lindsay keep the faith!
What type do u have? Small Cell or Non Small cell?
My wife was diagnosed with non small cell lung cancer in April, 2015...stage 3a...dr removed 2/3 of her right lung in May...re-staged her to stage 4 in July 2016...she had a genomics study done in the fall of 2016 and from that study, Mayo determined she had a breast cancer mutation in the lungs.
She has been on a clinical trial immunotherapy since Dec, 2016 and today she has a great quality of life. Infusions every three weeks, but very little side effects!
Be sure to ask the dr about a genomics study!
Best of luck!

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@burrkay, Thank you for sharing your story. That is amazing! So glad that you got her to the Mayo Clinic. The fact that YOU are posting on Mayo Connect shows what a great support you are to her. I wish here continued success.

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@cindylb

Hello all, I just joined this group. I am a breast cancer survivor of four years total (Stage 0 and Stage 1). Just as I got back on my feet my husband was diagnosed with COPD and we are now going through the tests to determine his exact lung cancer status. The support I have received as part of the breast cancer group on this site has been invaluable and now I'm hoping to find support and information as a caregiver for my husband. My husband has been part of an on-going lung cancer study (CT scans) for four years. He is an ex-smoker. His last scan in January showed a mass that they've been watching for a year that during the last six months doubled. His biopsy showed a cancer from the upper GI tract (not lung cancer specifically). However, with some research I discovered a lung cancer that shows as upper GI in the pathology called Pulmonary Enteric Adenocarcinoma. Our doctors are considering this but also requesting additional tests. His PET scan and brain MRI show no cancer elsewhere in his body but there is a lymph node in the lung that showed possible cancer in the center of his lung, near the tumor but also near the esophagus. Our next step is an Endoscopy next week. The biopsy of that lymph node will give us and the doctors more information. Once we have those results we'll meet with his oncologist to discuss the test results and treatment options. So far they are only saying Chemotherapy, which my husband is very hesitant to do. Support, thoughts, encouragement welcome. I look forward to reading your posts and gaining some understanding and insight into treatments and outcomes on this. We are finding this process much more complicated than my breast cancer journey. Best to everyone.

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Thank you for sharing your story and I'm sorry for all your wife and you have had to go through. I was thinking just yesterday before I read your post that science knows only so much and they do their best and are getting better but we're still the best stewards of our own bodies and health and we have to hope the doctors work WITH us to determine disease and outcomes. I'm glad you two have found something that is working to help your wife have a better, more manageable life.
I feel sometimes like I'm the only one who 'pushes' or asks questions with the medical community but I feel that we have to do that to get the best outcomes. It is do hard for anyone to advocate for themselves when they are ill however. That's where a good caregiver is so important. I'm sure your wife feels blessed to have had you in her corner throughout this. I'm encouraged by your post, so thank you!

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