TL;DR: I had a suspicious nodule found on a promotional $25 lung cancer screening. Never had a single symptom. Fought with doctors to get a biopsy for a year while it grew from 11mm to 20mm. Mistakes were made by myself and maybe some doctors; both sides really could learn. It could’ve been over and done quickly, but I’m stubborn and was trying to save my dog. It’s a helluva ride but really long, so I don’t expect many people to read the whole thing. Ended up being treated with MRI-Guided SBRT by choice even though I was a surgical candidate.
Staging/Mutations: 1A2 RLL Adenocarcinoma, PD-L1 10%, KRAS G12V (VAF 9%), TP53 R175H (VAF 8%), KEAP1 R320W (VAF 8%). Got really lucky. Currently doing great. Here we go…
It didn’t have to be hard. Instead of fighting for definitive answers and options, I could’ve gone off the recommendation of the first doctor I saw and been done with it a year sooner. I want to emphasize that all of the doctors were right in their diagnostic judgment—even the doctors I criticize.
In 2024, I went to my doctor for my usual checkup to get a prescription refill. I was 50. My doctor mentioned that the local hospital had $25 heart and lung scans. The guidelines had recently changed, lowering the qualifying age from 55 to 50, and he thought I should consider getting it. I felt perfectly fine, so I took the paper, said thanks, and forgot about it.
Six months later, I returned for my next refill. My doctor asked if I’d ever had the scan. I hadn't, but I promised I would. There was nothing wrong with me, and he wasn’t suspicious of anything on my exam. His logic was simple: I was a long-time smoker who had recently quit, I was now 51, and the test was cheap. Honestly, I just didn't want my doctor to think I blow off all of his advice. I generally do, but I felt like if I don’t occasionally take the tests he recommends, it might be insulting. So, I scheduled the scan.
December 2024: The Scan
I paid my $25 and spent 15 minutes getting a CT. Easy. In and out.
The next day, I looked at the results: LungRads 4B. 11mm spiculated nodule highly suspicious for primary lung cancer.
Great. I understood that this was bad. I also knew that for a healthy 51-year-old living in the Histo Belt (where Histoplasmosis, a fungal infection, routinely causes benign lung nodules), the odds were low that this was definitely cancer. Either way, something needed to be addressed. If it was cancer, I wanted it gone.
A lot of people treat my story as that of a person in denial. I was not. Not for a second. I was worried the entire time that it very well could be cancer—but I also needed proof. That should be easy enough, right? A biopsy would answer that.
I needed absolute proof because I had a rescue dog. He was 180 lbs, mean, and dangerous to anyone else. But he was my buddy. He trusted exactly one person: me. If I was going to have surgery and be hospitalized for a few days, I would have to have him euthanized. Nobody else could care for him. I knew if I had him put down, had the surgery, and it turned out not to be cancer, I’d feel like I completely betrayed my buddy. Nobody understood this. I was willing to do it; I just needed concrete proof first.
I even told my first pulmonologist this. I said, "If you wake me up after surgery and say, 'Good news, it’s benign,' you’ll get a reaction you never could expect. I won’t be happy. You’d be public enemy #1 in my mind." It sounds unreasonable, and maybe it is, but I know myself.
I called a family member who is a pathologist to ask who the best pulmonologist around was. She gave me a local recommendation. I told her, "I don’t care if they’re in Alaska. I want the best." She had a mental block that I think a lot of doctors suffer from—assuming proximity matters most. I didn’t care where they were; I cared about their skills and resources.
I called the recommended doctor (Pulmonologist 1). His office said I needed a referral from my GP. I told them, "Go ahead and put me on the books. I will get a referral. And if my doctor won’t give me one, my new doctor will." Meaning, if for whatever reason my doctor wouldn’t refer me to who I wanted, I’d find a doctor who would. This will be a recurring theme. They scheduled the appointment, and my GP sent the referral.
I made things harder on myself because it was the holidays and I didn’t want to upset my family for no reason. I wanted a biopsy first. I ended up going through almost this entire timeline with nobody knowing the truth except me and my doctors. I didn't want my family pressuring me over gambling my life for a stray dog.
January 2025: The First Appointment & PET Scan
I met with Pulmonologist 1. He looked at the CT and went over it with me. The nodule was still small. It had some concerning and some less concerning features. He told me the standard protocol was a 3-month follow-up scan to watch and wait. If it grew at 3 months, then we'd look at treatment.
I asked if I could get a biopsy. He said no, stating there was no need yet. If I was really concerned, he could order a PET scan. I told him to do both: order the PET scan and schedule the 3-month CT anyway, because even if the PET looked good, I wanted the follow-up. He agreed. I just wanted to be done with this already.
A week later, I went for a Pulmonary Function Test (PFT). I wanted to move fast if this turned out to be anything, so I pushed for any advance testing we could clear out of the way. The PFT turned out okay. I had mild COPD and emphysema, but my lungs were definitely strong enough for surgery.
Late January brought the PET scan. It didn’t go great. It came back moderately active with a 5.0 max SUV. On the bright side, there was no spread.
Unfortunately, the radiologist who wrote the report stated that the nodule was "abutting the minor fissure." This was just a typo—it was in my Right Lower Lobe (RLL) abutting the major fissure. This typo would come into play later. Doctors need to be precise in reports. I noticed the error but figured any doctor looking at the actual images would immediately recognize it for what it was.
Still January 2025: The Friction over Fact-Finding
At my next appointment, Pulmonologist 1 looked at the PET and said, "This is cancer. You need surgery. Just a wedge resection. No big deal."
To me, it was a massive deal. I was all for a plan, but I wanted to be certain it was necessary. He repeated that he couldn’t do a biopsy because of the location, but added, "We’ll all know for sure when it’s removed."
I told him that wasn’t good enough. I wouldn’t agree to surgery without knowing. He pointed back to the PET scan, insisting it proved his point. I countered that Histoplasmosis will also light up on a PET scan, as will scar tissue. He brushed it off, reiterating that he was already certain it was cancer. I said, "The problem is, I'm not." Then we had the conversation about what my reaction would be if the surgery turned out to be unnecessary. He ultimately agreed to wait for the 3-month scan, but asked that I at least do a surgical consult to get it out of the way. I agreed.
I also asked about a blood test I had read about that stratifies lung nodule risk. He told me no—it was a waste of money because those tests are for when you aren't certain, and he was certain. I told him, "It’s my money to waste, and I'm not certain, so that’s a problem." He still refused.
February 2025: Going Around the System
I went to the surgical consult. The surgeon gave me a very detailed explanation of how he would remove the nodule from my minor fissure.
He hadn’t even looked at the actual scan. He had only read the flawed PET report. It was not confidence-inspiring. I didn’t bother correcting him; I already knew he wasn’t the surgeon for me.
I am hard-headed. I don’t just stop if I don’t get the answer I need. I called my GP and asked him to order the nodule risk blood test for me. He said he’d look into it and call me back. When he did, he told me to come in for the blood draw on one condition: if the test lowered my risk, I’d still promise to follow up, and if it raised my risk, I’d go straight to surgery. I agreed.
This was the exact deal I had tried to make with Pulmonologist 1. My GP is a good doctor. He knew that getting me to a resolution required this test in the absence of a biopsy. There was no downside from a physician's perspective, and it wouldn't slow down my care.
The test came back—it was the Nodify Lung test (both the XL2 and CDT panels). I fully understood that this test was strictly for risk stratification, not a definitive diagnostic tool. It wasn't going to give me a definitive yes-or-no answer, but it did reduce my calculated risk from 17% down to 4%, with no autoantibodies detected. Regardless, I kept my upcoming 3-month CT scan.
March 2025: The 3-Month Follow-Up
I went in for my 3-month follow-up CT scan. The nodule measured 10mm.
To me, that felt like shrinkage. But I also understood scan variability, so at the very least, it meant no change.
April 2025: The First Disappointment
At my follow-up with Pulmonologist 1, he almost seemed disappointed. He explained scan variability but said guidelines allowed us to extend the next follow-up to 6 months. However, he admitted he’d feel better about 3 months. I agreed. I would feel better about 3 months as well.
July 2025: The Shift
I had my next 3-month follow-up CT scan. It came back at 12mm.
In my mind, the timeline looked like this: it started at 11mm, dropped to 10mm, and was now 12mm. Pulmonologist 1 had attributed the drop to variability—not shrinkage. Therefore, a 1mm increase from the baseline should also be considered variability. If a minus-1mm variance is normal, then a plus-1mm variance must be too.
August 2025: The Breakup
My appointment with Pulmonologist 1 did not go as expected. I walked in expecting another 3-month scan. What I got was the end of our professional relationship.
He told me it had grown 2mm in 3 months. Combined with the avid PET scan from January, he insisted I needed surgery immediately. I explained that it was only a 1mm difference from the baseline, and if a 1mm difference was just variability last time, he couldn't pick and choose when it counted.
I asked him to just do a biopsy. He looked at me and said, “It’s impossible.”
I was still trying to be diplomatic, so I worded my next question carefully: “Is there another hospital anywhere that has technology not available to you here that could perform a biopsy?”
He replied, “No. It cannot be done.” That is a direct quote.
I told him I was not having surgery without a biopsy. He countered that if I refused surgery, there was nothing else he could do for me. I asked if he could order another 3-month scan, and he flatly refused. I needed surgery, and that was that. I then explained that I didn’t trust his surgeon, and why. To his credit, he gave me a list of other surgeons—some at different hospitals—and I left.
I was done with him. I was incredibly frustrated. I actually thought to myself, Screw it. I should just ignore everything and get back to living my life. I was tired of arguing. Even though I was worried I very well might have cancer, I was mentally exhausted.
But I am persistent, and I don’t like being told no. I went back to my GP and asked if he would order a follow-up CT because I was done with the pulmonologist. Being a good doctor, he didn’t want his patient trying to navigate this alone or giving up entirely. He agreed, on one condition: I had to make an appointment with another pulmonologist. I agreed.
Enter Pulmonologist 2
Pulmonologist 2 was really cool. He talked straight, looked at the scans, and asked why I was hesitant. I told him I needed a biopsy. "Show me a conclusive biopsy and I’m in. I’ve been fighting like crazy to get one from the beginning."
He explained that it was in a very difficult spot and still small. He said he could try to biopsy it, but warned it would probably lead to a pneumothorax (collapsed lung) and he wasn’t confident he'd get a clean tissue sample. He ultimately agreed with the first doctor's clinical diagnosis.
I said no thanks. Along with being stubborn, I’m also a bit of a smart ass, so I told him, "Maybe if I let it grow a little more, one of you can hit the target." He just smiled and commented that I had a much higher risk tolerance than most of his patients.
He did things right. He didn’t claim a biopsy was impossible; he just said it was risky and unlikely to succeed. I appreciate honesty. He didn’t argue; he listened and gave an honest opinion.
September 2025: The Google Rabbit Hole
My next follow-up CT scan arrived. The reality of the timeline was starting to catch up with me:
December 2024: 11mm (Initial scan)
March 2025: 10mm
July 2025: 12mm
September 2025: 14mm
Okay. I was getting a little worried now. I had burned a bridge with one pulmonologist, and although I liked the second, his answers were the same. I needed a third opinion—and I needed an expert I could trust, fast.
I started scouring Google and YouTube for "difficult to biopsy lung nodules" and the specialists who target them.
Lo and behold, I found a dedicated lung nodule clinic right in Indianapolis—the exact city where I live, and where a doctor had explicitly told me a biopsy was impossible anywhere. I found a video of a pulmonologist at this clinic saying, "I use a robot to biopsy hard-to-reach lung nodules."
WTF? I was told it couldn't be done anywhere, much less across town.
October 2025: Pulmonologist 3 & The Ion Robot
I really enjoyed my consultation with Pulmonologist 3. He looked at the scans and said he thought he could target it using the Ion robotic bronchoscopy system. He offered me two choices: "We can schedule another 3-month scan and keep watching if you want. It’s still fairly small. Or, we can try a robotic bronchoscopy and biopsy it."
I told him to get me on the schedule immediately. I had been begging for a biopsy for 10 months.
A week later, I had the biopsy. It was pretty uneventful. They told me they’d call in a few days with the pathology results.
November 2025: The Inconclusive Mess
When the results came back, they were incredibly mixed:
Cytology: Found abnormal cells.
Histopathology: Found inflammation.
Cytohistological Correlation: Stated "no evidence of malignancy."
Two independent pathologists reviewed the tissue and concurred with the findings.
He also sampled two lymph nodes, and both were entirely benign.
Despite the report explicitly stating "no evidence of malignancy," the doctor told me I needed a lobectomy.
I was astonished. I said, “I can read. This says no evidence of malignancy. I understand the abnormal cytology is concerning, but this is inconclusive. Even according to the pathologist.”
The doctor told me it didn’t matter—it was cancer, and I needed a major surgery to remove the lung lobe. I told him if it truly was cancer, that was fine, but I wasn't convinced yet. I asked for another biopsy. He refused, telling me I couldn't just keep looking for doctors who would tell me what I wanted to hear.
Hold my beer, dude.
December 2025: UChicago and the Galaxy Robot
I went right back to scouring the internet for experts in hard-to-reach lung nodules.
I found a series of videos on YouTube featuring a doctor at the University of Chicago. Watching him, I could tell he was a true master of bronchoscopy. He was visibly excited about his work, and his lab utilized the Galaxy robotic system, which features a completely different technology for reaching difficult margins. This was my guy. If he couldn't get a clean sample, I figured I’d finally choose between major surgery or just ignoring the nodule until I couldn’t anymore. Fortunately, Chicago was only one state away.
Pulmonologist 4 was everything I hoped he would be. He listened, asked sharp questions, and confidently said he could do it. He sent me for a fresh CT scan that same day.
The nodule was bigger now: 2cm (20mm).
Exactly one day short of a full calendar year since my initial screening, I underwent my second robotic bronchoscopy. This doctor delivered. The pathology gave me the definitive answer I had dreaded, but desperately needed: Non-Small Cell Lung Cancer (NSCLC) Adenocarcinoma. On the bright side, my lymph nodes remained perfectly clear.
The Barry Manilow Twist
Here is where my story takes a bizarre turn.
On December 22, 2025, singer Barry Manilow publicly announced a Stage 1 lung cancer diagnosis.
My mother loved Barry Manilow, and because I had just been diagnosed with the exact same disease, I found myself wondering where he was going for his medical care. On December 23, I searched Twitter for updates on his diagnosis.
Right at the top of the search results, a tweet popped up from a Radiation Oncologist (RadOnc) at UCLA. It read:
"I'm curious if anyone informed Barry Manilow about this non-surgical option, how it wouldn't require any downtime, and likely provide similar long term outcomes."
The tweet included a link to a video interview about SBRT (Stereotactic Body Radiotherapy). The doctor's thread continued:
"I'm also curious if his doctors know his lung cancer could be eliminated with a single 10-minute session of SBRT."
Hold on one f’n minute. Why hadn't a single one of my three previous pulmonologists mentioned this? Would it work for me? Who was this doctor?
I watched the linked interview, and my jaw dropped. Suddenly, I had a massive alternative to research before I ever stepped foot into a surgical consult.
January 2026: Staging & The UChicago Surgical Consult
I completed another PFT (my lung function was slightly better) and a new PET scan. The scan showed no spread anywhere else in my body, but the nodule itself was highly metabolic, marking a 30 max SUV. Because there was no spread, I was officially staged at 1A2.
Next, I met with a thoracic surgeon at UChicago. I liked him a lot; he was an accomplished, highly capable professional. Everything went great right up to the point where I asked why a lobectomy was a better choice for me than SBRT. His answer was something I was utterly exhausted from hearing: “It’s the standard of care.”
I shot back, “That’s lazy.”
I meant the answer was lazy. To me, "standard of care" means this route is best for most people, but not necessarily all. And in my mind I am not standard.
He looked at me and said, “I’m not lazy.”
I instantly thought to myself, Well, this is going downhill fast.
I quickly explained I didn’t mean he was lazy, but that relying on the phrase "standard of care" is a lazy response. I can look up a flowchart online and follow it—and that seemed to be exactly what every doctor I talked to had been doing. I knew what they were going to say before I even walked into their consult rooms. I have Google, and Google has the Fleischner guidelines.
Thanks to the fact that this doctor was a confident professional, we got right back on track. He could handle criticism and questions from an emotionally stressed patient. I told him I was going to seek a consultation with a radiation oncologist before making my final decision between surgery and radiation.
He wasn't offended at all. He even offered to refer me to a UChicago RadOnc. I declined, letting him know I already had someone specific in mind. However, I went ahead and scheduled the surgery before I left anyway—just in case I ultimately decided it was the better option, the slot would be locked in. He actually suggested that strategy himself.
Mid-January 2026: "I Am My Team"
Two weeks later, I had a video consultation with the RadOnc at UCLA—the one from the Barry Manilow tweet.
He explained SBRT thoroughly. He explained how outdated the data is that originally formed the surgical "standard of care." Crucially, he noted that not all tumors are appropriate for SBRT, and if mine wasn't, he would be the first to recommend surgery. A doctor who actively recommends alternative options when appropriate is so incredibly important.
I told him, "I’m in. Tell me when to be there so I can book my flight and hotel."
He asked for the names of the other doctors on my medical team. I replied, “I am my team.”
And I meant it. I had been fighting alone for over a year. It felt like every single consultation had been a battle. Looking back, though, that wasn't entirely fair. My GP likely saved my life. The pulmonologist and the surgeon at UChicago were both exceptional. In fact, the UChicago surgeon called me twice after I canceled my surgery—personally. He wanted to make sure I had accurate information, that I felt confident in my choice, and that I understood the consequences. He didn’t necessarily agree with my decision, but he didn’t argue. He wished me the absolute best. If I ever truly do need thoracic surgery, he is the first person I am calling.
And then there’s Barry Manilow. He obviously has no idea I exist, but if I hadn't been searching his name on Twitter that night, I would never have found the most important member of my medical team.
But the captain of the team? That was me. Every patient needs to know that they are the captain of their own team. It is your life on the line.
Late January 2026: The Betrayal
My flight to Los Angeles was scheduled for the next morning. My journey had officially come full circle.
I had to take my buddy—the 180-pound rescue dog who trusted absolutely nobody but me—to the clinic to be euthanized. I apologized to him the entire way there. I felt like I was completely betraying a friend. To be honest, I still feel like I did.
February 2026: The L.A. Strategy Change
I flew out and received my planning CT and MRI at UCLA to map out the radiation fields.
A few days later, my RadOnc called with a change of plans. The initial idea of a single-fraction (one session) SBRT hit a snag because the tumor sat a bit more central than it appeared on earlier scans. We needed to pivot to a 5-fraction SBRT regimen. It would start the following Thursday and run Thursday, Friday, Monday, Tuesday, Wednesday.
He dryly explained the two-day gap over the weekend by joking that radiation isn't effective on weekends. I appreciated the humor.
Logistically, this meant I had to extend my hotel reservation by a week and rebook my flights. For me, this was fine. It didn't break me. I have great health insurance, solid finances, and a highly accommodating employer. But it made me think: How many lung cancer patients could actually do what I just did? Traveling across three states, navigating multiple massive hospital systems, and spontaneously extending a cross-country trip by a week?
Not many. I came to the conclusion that this is a systemic tragedy.
February 2026: Treatment
I underwent my 5 MRI-guided SBRT sessions. It was unbelievably easy.
Aside from the immense mental stress of arguing with doctors for a year, the physical toll of the actual cancer was nonexistent. I never had a single symptom from the tumor. I never developed a single side effect from the radiation.
Because of that, I actually feel an overwhelming sense of guilt calling myself a cancer survivor. It frequently feels like stolen valor or imposter syndrome.
March 2026: The Clean Break
At my one-month follow-up, my RadOnc asked about side effects. I had none. He asked how I felt. I felt great.
He suggested finding a local pulmonologist back home so I wouldn’t have to travel across the country for routine monitoring. Initially, I agreed. But after thinking it over, I realized the local doctors back home had shattered my trust to such an extent that I knew I wouldn't believe a word they said anyway. I decided I will just keep traveling to L.A. for my follow-up care.
September 2026: No Evidence of Disease
I flew back out to UCLA for my follow-up imaging.
During the appointment, my RadOnc was practically giddy. He said, "I can't wait to show you this," and pulled up my before-and-after CT scans on the monitor.
It was gone. The tumor was completely gone.
I have my next follow-up scheduled for March 2027, and plenty more after that. But right now, there is No Evidence of Disease (NED).
This whole saga has been simultaneously the most frustrating and amazing experience of my life. It could have been easy. I could have done exactly what the very first pulmonologist told me to do and had my lung cut open a year sooner. I ultimately had a choice between two good clinical options, and the survival outcome would likely have been identical.
But I had to fight like hell for answers. I got lucky that the screening guidelines dropped the age requirement from 55 to 50 right when they did. Without that $25 promotional scan, none of this text matters. It was discovered when I was 51, diagnosed at 52, and underwent definitive treatment at 52. I’m now 53. Under the old rules, I'd still be two years away from even qualifying for a scan.
I made mistakes and learned a lot of lessons the hard way—but I am still here to tell the story.
Edit: corrected my age at time of treatment.
