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?

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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@llwortman

Hello Lindsay:
Welcome to Mayo Connect. I have met many amazing care givers and survivors in this wonderful and supportative community.
I was diagnosed with non small cell lung cancer 10 years ago when there was little printed information and little hope for lung cancer patients. Now, there are over 1100 therapies. With proper diagnosis and proper treatment there is hope!
My quality of life was greatly improved after my left lung VATS surgery at Mayo Clinic along with a Paced Breathing Research Study, lead by Dr Amit Sood.
The research at Mayo Clnic is remarkable and the support is the best in the world as well. So let’s stay Connected, ok?
A warm welcome,
linda

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I will stay connected! I want to hear only positive things as that’s what I need right now!

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@llwortman

Hello Lindsay:
Welcome to Mayo Connect. I have met many amazing care givers and survivors in this wonderful and supportative community.
I was diagnosed with non small cell lung cancer 10 years ago when there was little printed information and little hope for lung cancer patients. Now, there are over 1100 therapies. With proper diagnosis and proper treatment there is hope!
My quality of life was greatly improved after my left lung VATS surgery at Mayo Clinic along with a Paced Breathing Research Study, lead by Dr Amit Sood.
The research at Mayo Clnic is remarkable and the support is the best in the world as well. So let’s stay Connected, ok?
A warm welcome,
linda

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I’m so with you on
the positive!
linda

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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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I am having targeted brain radiation, then chemo, then a clinical trial that targets my EGFR Exon 20 Insertion mutation. They did the Guardant 360 blood test on me. So glad your wife is doing well!

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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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Hugs and silent blessings are coming to
you!
linda

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@merpreb

I am so sorry that you received this news. What will be your treatment?

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I am having targeted brain radiation, then chemo, then a clinical trial that targets my EGFR Exon 20 Insertion mutation. They did the Guardant 360 blood test on me.

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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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@cindylb, I'm so sorry to hear about your husband's diagnosis. Lung cancer and breast cancer definitely are different journeys. And it's also so different being the caregiver rather than the patient. However, I'm confident that your breast cancer experience will contribute to your caregiving skills. I've also noticed how compassionate, helpful and informative you are with others in the breast cancer group on Connect.

I know you'll get great support and information here from other lung cancer survivors. @burrkay in particular can share his caregiving experience with you.

Cindy, has your husband shared why he is resistant to getting chemotherapy treatment?

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Bless your heart…stay positive and keep asking questions. Sounds like you are getting excellent care. A positive attitude is very important!

Liked by testlady

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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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The Chemo question for my husband – My sister had Stage 4 Lung Cancer at diagnosis. Her cancer was in both lungs, had spread to her brain and her liver. She lived through four brain operations in four weeks…and survived and then my husband and I took care of her for the first six months. She had both radiation and chemo over those months and was already pretty beat up from the brain tumor. It was a difficult experience. She was given just a few months to live but made it 18 months (she was tough). Having seen that both my husband and I are reluctant to have Chemo. I think the primary concern is that Chemo kills good cells along with the bad and in her case, it was just prolonging the inevitable and it was a very tough go for her. The doctors assure us that there are newer and better therapies and drugs with Chemo but we'll have to weigh the alternatives. I'm sure many of you here have had Chemo and perhaps it's not as bad as what we've seen (which was 8 years ago). We're hopeful that there may be an alternative or we're just plain wrong about the Chemo or that radiation and a combo of immunotherapy or targeted therapy may be a more palatable option. At this point we're still trying to get to a final diagnosis and stage….but the more information I can get the more I can help my husband make this decision. He's a 'quality' vs.. 'quantity guy for sure. Thank you for your feedback and kind words.

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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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Hi Cindy- so sorry to hear about yours and you husband’s journey with cancer.

You are right…lung cancer is complicated, and at times even the experts have a hard time getting it isolated for treatment.
HERE IS MY WIFE’s story:

I am my wife’s caregiver. She went through a multitude of tests for a period of 15-18 months in 2014/15, including many bronchoscopic proceedures, tests for GURD, and ultimately a surgical procedure called nissen fundoplication or “tummy wrap” normally done for obesity. MY WIFE WAS NOT OBESE!

My wife’s lung cancer continued to grow….until finally the pulmonologist got a really “good biopsy” with a bronchoscope that nearly killed her! She ended up on a ventilator for two days due to the pulmonologist nicking a vein which caused her to start to bleed out!

From that biopsey, the pathologist report showed a “possible adnacarcinoma”! We were then referred to a thoracic surgeon who wanted to remove the lower lobe of her right lung, still not convinced it was due to cancer! Some 18 months after her first pneumonia experience!

Long story short, with that diagnosis, I packaged up all of her records including the many scans, path reports, etc., and FedEx them to Mayo in Rochester.

Mayo received the package on Friday, and on the following Monday afternoon I received a call from Mayo informing me that my wife had a cancer that needed to come out NOW!

We journeyed to Rochester (2 days travel), the following Friday my wife had 2 lobes of her right lung removed.

She was stage 3a by the time she got to Mayo in May, 2015…opted for chemo…a year later she was restaged to stage 4 and told she needed immunotherapy, without which she woul probably die in 4-6 months.

We tried the Opdivo immunotherapy and the tumors grew even more…

The Mayo oncologist then ordered another biopsey and a genomics study in the fall of 2016…

The genomics test determined her mutation is a breast cancer mutation…thus the reason she was not responding!

My wife has been on a clinical trial drug since December, 2016 and gets infusions every tgree weeks…she has very little side effects, and a very good quality of life…playing golf, card clubs, etc..

She jokes that some people go in for an allergy shot every month…

If she had not had the chemo, she would not have qualified for The immunotherapy!

Stay positive keep your husband positive.
God bless you both…

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@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.

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Linda- I understand how hard it is to try and breath after waking up after lung surgery. I've had two of them, right lower lobectomy and upper left lobectomy. After I woke up from my second lob. I thought, Sh..t, I'm doomed! And when the nurse brought in the spirometer, knowing what it's used for, I was ready to leap out of bed and leave! But I didn't have the strength nor breath to do it.

When you are diagnosed with lung cancer and have never smoke it places and undue burden to defend themselves against smokers. No one starts smoking and thinks, oh goodie I might get cancer! I never wore a T shirt with a target on it asking to be shamed.
Shame and guilt are two different things but they should never be apart of anyone's life while ill. There was no complicity of self-affliction. I didn’t paint a target on my shirt and advertise target practice. No one deserves to be told "I told you so."

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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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@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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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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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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