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.

@sura

Oh, I thank you for you response, it is incredibly helpful to hear others' experiences. My 3 largest nodules doubled in the past 7 years and doctor says they are not solid. but mostly ground glass and very low grade. He is thinking that the worst that could happen would be a doubling again over the next 7 years but they could also slow. Meantime, we will be doing CT scans every 6-12 months. It is the new way of things, I realize, and I am glad surgeons are more hesitant to chop up parts of women's bodies than they had ben in the past but it is weird to 'live with' cancer...please tell me about your surgery, was it minimally invasive, did they need to remove an entire lobe? ..one reason to do an earlier surgery - for me - is surgeon says i would lose just 1% lung function on two lobes and 3% on a third lobe...how has your recovery been? how is your breathing? Are you relieved?

suraleah

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"surgeon says i would lose just 1% lung function on two lobes and 3% on a third lobe…"
Did surgeon say if it would be a wedge resection, or greater part of lobe? And does he do VAT (video assisted thoracic) surgery? And does he do Robotic bronchoscopy?
Also when looking at size, there is a distinction between total size which would include the ground glass portion and any parts solid or part solid vs. how big only the solid or part solid area is. The solid/part solid is what is of consequence.

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@pb50

Well the last sentence you wrote is just flat wrong, wrong, wrong. Surgeons’ noses should grow when they say that. I will say when I am sitting calmly in a chair, I test almost 😅 Normal on pulmonary function. But I am absolutely short of breath easily - lifting my mattress corner to change sheets, bending over to dust baseboards, walking with virtually any incline, lifting anything, sweeping - all will have me gasping and my heart rate above 120. And I use that little device they gave me to use. Again, sitting calmly I’m golden. And I still have rib and diaphragm pain when I try to take a deep breath.

Now to be fair I am 73 and a tad overweight. But I was old and chubby before the surgery too. 🙂

Not trying to scare you. I’m managing and I’m sure you will too. I’m just trying to share my reality. I don’t think I’m alone in that experience. It shouldn’t prevent you from surgery if that’s the recommendation at some point. But just go in with eyes wide open.

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I have the same issue. On my sofa my oxygen saturation levels (oximeter reading) just fine, but with exertion they fall even below 88. My pulmonary function tests confirm it. So did my cardio rehab after stent.
Walking will strengthen your capabilities. But there can be several causes for this shortness of breath. Lungs (lost lung function, scarring from fibrosis, interstitial disease etc.) and heart issues.

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@vic83

"surgeon says i would lose just 1% lung function on two lobes and 3% on a third lobe…"
Did surgeon say if it would be a wedge resection, or greater part of lobe? And does he do VAT (video assisted thoracic) surgery? And does he do Robotic bronchoscopy?
Also when looking at size, there is a distinction between total size which would include the ground glass portion and any parts solid or part solid vs. how big only the solid or part solid area is. The solid/part solid is what is of consequence.

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Yes, he does VAT. It would be wedge resection. There are 3 nodules to remove: 2 are completely groundglass, the smallest of the three is subsolid. All are low-grade. It would be 2 surgeries as each is in a different one, so one surgery for a lobe on the right. Then another surgery for 2 nodules in the left lung, different lobes: one upper, one lower. I do not know about the robotic bronchoscopy.

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@vic83

You mention multiple nodules needing treatment. That sounds like multifocal adenocarcinoma (multifocal lung cancer). Have they mentioned that to you? The nodules start out as "groundglass" on the CT scan and then eventually change to part solid and solid. They are considered to be primary independent cancers, but some may be metastasis of others - they can't tell on scan. This type of lung cancer is being studied for best way to treat, whether to be aggressive or not, etc. There are a few people on Connect with this cancer (Merry started thread).
I was diagnosed at age 80, and am now 82 and active. More than age, it is your overall health that matters. The idea is not to let the little suckers go outside the lung. And the goal is to preserve lung function, so treatment options are designed to provide you with the highest quality of life for as long as possible.
You don't mention a PET scan. Have you done one? That goes a long way in telling them what is going on with certain nodules. CT scan shows growth in size, but PET shows intensity indicative of cancer.

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it is indeed adenocarcinoma, in the non smallcell group. Yes there is debate about how these nodules are dealt with these days, with an emphasis placed on quality of life. I have read the staging and grading that is currently being used to assess treatment or waiting with repeated CT's., mine falls in the 'do nothing for now' range, relying on 7-month CT scans to assess changes and change course if need be. They are low-grade and primarily groundglass at this point. My doc indicates the nodules are too small to be picked up on a PET scan. l am 77, these nodules were first seen 7 years ago, they have doubled since then. I too am active, still working, involved. The docs do not want to change that at this point, so the protocol these days , confirmed by much of my sleuthing is to keep a close eye via CT scans - this is based on size of nodule, quality of nodule (groundglass versus solid, etc), that they are all contained at present and considered small in medical terms - 9mm, 11mm, 13mm.....I have no other chronic conditions. I know this would have been immediate surgery in earlier times, typically removing the entire lobe, not a wedge resection. I am appreciate we have come that far.....I will find the thread that Merry has begun. Thank you for your response and for letting me know about others with these same modules. And adding your knowledge. It is deeply appreciated..

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@vic83

You mention multiple nodules needing treatment. That sounds like multifocal adenocarcinoma (multifocal lung cancer). Have they mentioned that to you? The nodules start out as "groundglass" on the CT scan and then eventually change to part solid and solid. They are considered to be primary independent cancers, but some may be metastasis of others - they can't tell on scan. This type of lung cancer is being studied for best way to treat, whether to be aggressive or not, etc. There are a few people on Connect with this cancer (Merry started thread).
I was diagnosed at age 80, and am now 82 and active. More than age, it is your overall health that matters. The idea is not to let the little suckers go outside the lung. And the goal is to preserve lung function, so treatment options are designed to provide you with the highest quality of life for as long as possible.
You don't mention a PET scan. Have you done one? That goes a long way in telling them what is going on with certain nodules. CT scan shows growth in size, but PET shows intensity indicative of cancer.

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I have another question. Because I am close to your age and also active in life with no chronic medical conditions - tell me, have you had surgery? or any other treatment? Or are you on the repeat CT-scan watchful waiting path?
Thanks for whatever you want to add.
s

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@sura

I have another question. Because I am close to your age and also active in life with no chronic medical conditions - tell me, have you had surgery? or any other treatment? Or are you on the repeat CT-scan watchful waiting path?
Thanks for whatever you want to add.
s

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In Oct 2021 I had some shortness of breath. In Nov, I had abnormal chest x-ray, followed by abnormal CT scan followed by abnormal PET scan. Reading the reports, I knew I had a problem, so I had everything sent to Mayo and was called immediately. I went from abnormal chest x-ray to first VAT surgery in 7 weeks with Thanksgiving and Christmas in-between. They removed a 3.1 cm stage 1b cancer from RUL. They told me 80% chance it is cancer before surgery. I was part of a new process where they do robotic bronchoscopy to biopsy and if it looks suspicious, they take it out then and there to avoid making patient return for second procedure. I was driving my car a week later.
At the same time, I discovered I had a heart problem. I had an angiogram before going to Mayo and they found a blockage. But I did not do stent then because with the blood thinners I would not have been able to do the lung surgery. I waited another four months to put in a stent.
Because i have multifocal with lots of nodules in different stages of development, I started going 3 months, then once 6 months when things were quiet but then after 6 months, they decided to do second VAT on LUL (based on CT scan and PET scan). I also saw Radiation Oncologist at that point and decided to do VAT for one nodule (I like cutting them out) and then radiation on another one which was not a good candidate for surgery. With the inflammation after radiation, I had another CT scan. Next I will do a PET scan in Jan as they are watching 2 nodules, so I expect treatment. I tell them I am a recurring customer.

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@vic83

In Oct 2021 I had some shortness of breath. In Nov, I had abnormal chest x-ray, followed by abnormal CT scan followed by abnormal PET scan. Reading the reports, I knew I had a problem, so I had everything sent to Mayo and was called immediately. I went from abnormal chest x-ray to first VAT surgery in 7 weeks with Thanksgiving and Christmas in-between. They removed a 3.1 cm stage 1b cancer from RUL. They told me 80% chance it is cancer before surgery. I was part of a new process where they do robotic bronchoscopy to biopsy and if it looks suspicious, they take it out then and there to avoid making patient return for second procedure. I was driving my car a week later.
At the same time, I discovered I had a heart problem. I had an angiogram before going to Mayo and they found a blockage. But I did not do stent then because with the blood thinners I would not have been able to do the lung surgery. I waited another four months to put in a stent.
Because i have multifocal with lots of nodules in different stages of development, I started going 3 months, then once 6 months when things were quiet but then after 6 months, they decided to do second VAT on LUL (based on CT scan and PET scan). I also saw Radiation Oncologist at that point and decided to do VAT for one nodule (I like cutting them out) and then radiation on another one which was not a good candidate for surgery. With the inflammation after radiation, I had another CT scan. Next I will do a PET scan in Jan as they are watching 2 nodules, so I expect treatment. I tell them I am a recurring customer.

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I am so appreciative of you revealing this. I am well behind you on all these developments but believe I am headed in a similar direction. My nodules were found inadvertently, with a CT scan of a respiratory infection. I have large & small nodules in 3 lobes; if i did surgery now it would be wedge resection of 2 lobes, 2 different VAT surgeries.... So I am at a low-grade early stage, small in the medical view, largest 13mm. They have grown in the past 7 years, doubled. So I am headed down the surgery path, just not yet....I am not a candidate yet for a PET scan because their small size and placement will not be seen in any significant way on the scan. I had contacted Mayo but they are currently not doing much unless you physically go there, a medical licensing problem in being out of state. But I do know MDAnderson will review your records and send a report. But I suspect we will not know much more until the next CT scan in May as the previous CT scan was 7 years ago so we are not really sure how active the nodules are.....my doctor has suggested - if i want - that he refer me to a radiology oncologist for another opinion but he thinks they would not want to do radiation yet. I may do that after the first of the year. I am 77 at this point, still working & active and would like to keep it that way for as long as possible....I see i will have to devote considerable energy to keep my spirits up!
s

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@lls8000

Hi @thieschafer, I have an ALK mutation, and have been taking a first-line targeted therapy for 43 months now, but who's counting. That's longer than the median for this particular drug, so I'm appreciative of the science behind these drugs. Some of us get lucky and go beyond expectations, I'm hoping that you are one of those. Learning to accept that there are things that we just can't control can help, but it's not easy.
I'm hoping that you do well on the Tabrecta, with minimal side-effects. Did your doctors test your tissue from your original surgery for biomarkers, MET?

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Thanks for your encouraging response. I am actually starting Tabrecta today. Hoping I will have the kind of success you are havimg. My original tumor was tested for biomarkers and MET was identified. So right now, a little hopeful and a little scared.

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@thieschafer

Thanks for your encouraging response. I am actually starting Tabrecta today. Hoping I will have the kind of success you are havimg. My original tumor was tested for biomarkers and MET was identified. So right now, a little hopeful and a little scared.

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@thieschafer, You may want to keep notes about the side effects that you encounter, so you can remember to ask your doctors about them. Hopefully your list is short! Feel free to ask about dealing with any side effects here too. There are many of us on other targeted therapies. Good luck with the Tabrecta! 🙂

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Hi, my Nme is Debby, and I have stage 2A adenocarcinoma. I had the upper rt lobe removed last August . Genetic testing was done and I have an EGFR mutation, which is orally treatable with 80mg Tagrisso. I started the drug a month ago and am having fatigue and weakness and some brain fog. Otherwise, I have been doing well

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