Living with lung cancer - Introduce yourself & come say hi

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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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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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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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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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 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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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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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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