Living with lung cancer - Introduce yourself & come say hi

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.

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

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..

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.

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.

"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.

I am finally recognizing that there are indeed pros and cons to any course of action. I am fortunate to be living in Chicago were NW Hospital has opened a Lung Nodule Clinic with a team of specialists: pulmologists, thoracic surgeons, radiologists, oncologist. So they consult with each other before setting out options. In my situation the thinking is that the nodules cannot yet be confirmed as malignant, grow very slowly, are not solid but ground glass, and slow-growing. Surgery or radiation at this point is not advised, the side effects of either/both not being worth it at this point. Of course if I want surgery they will do so. My doctor is fine to refer me to a radiology oncologist to see what they recommend and that may be my next step. Removal of the existing 3 larger nodules would require 2 surgeries as they sit on both the left and right lung and in different lobes. I have wrapped my mind around eventually needing surgery but will wait until the next CT scan results, in five months. .....You have had quite a lengthy process attending to your nodules; like your situation, my doctors are confident the removal will be entirely successful (whether malignant or benign). My doctor had just been informing me about the possible side effects of radiation & apparently you have experienced a major one. It is quite a journey. ...I am sure my age is factoring into the recommendations -currently 77 (high-energy, still working and active in life). If the nodules continue with their slow growth I could be 87-90 by the time surgery would be a necessity. I think they think I might not care at that age but I imagine I might still! and who wants surgery at 87 or 90 (versus in the next few years). Anyway, i am appreciative of your offering your experience as it provides reassurance that one can do all this and helps me feel less alone. It can be so confusing and in some ways is sort of a gamble. But then again, really so is life.
s

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.

I fully agree with the advice to be well informed on all options for a specific issue.
That means understanding that given any nodule under consideration, there are going to be pros and cons to various treatment options.
Surgery option depends on the location of the nodule. It does get rid of the cancer, and it allows tumor analysis. I have multifocal lung cancer and I chose to have surgery twice and do not regret it. I had video assisted thoracic surgery so that is much easier than open chest.
I have also had a round of SBRT (3 sittings) on one nodule. Quick and painless but within 6 weeks I developed radiation induced pneumonitis (one of the risks) and have been on Prednisone for 6+weeks and now tapering off. While my last pulmonary function test was an improvement over the earlier one done at time of full-blown breathing problem - it is not back to where it was 7 months ago.
Always look for experienced specialists, preferably with some kind of "Tumor Board" where different specialists discuss your case and make recommendations, so you are not dependent on one doctor.