Living with lung cancer - Introduce yourself & come say hi

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

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.

"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.

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.

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.

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

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.

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?

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.