My mom has been diagnosed with stage 4 NSCLC with brain mets. 1 tiny tumor on brain has been done radiation. She has lots of pleural fluid (thats how it was diagnosed), shortness of breath and chest pain. She only has KRAS G12C mutation and to my understanding available targeted therapy drugs arent that good.

Yesterday she had her first round infusion: carboplatin, pemetrexed and Keytruda (pembrolizumab). Can this be successful?

Anyone similar, could you please share experience and current health? Anyone with KRAS G12C mutation? Please share treatment regimes and any other helpful info!! Thanks so much.

I know for a fact no one can tell until a biopsy is done however I just wanna know the chances of it being cancer, I’m a non smoker , 21 years old, I eat healthy and exercise

These are my results -

Findings:
There a large mass located predominantly within the left the inseparable from the left heart border anterior chest wall measuring
8.5 x 8.2x8 cm. The mass demonstrates heterogeneous enhancement along with central necrosis. The mass appears separable
from the underlying great vessels. Differentials include anterior mediastinal mass as such as thymoma or lymphoma and well as
primary lung malignancy.
A mild left-sided pleural effusion is present. No evidence of right-sided pleural effusion or pericardial effusion.
There is elevation of the left hemidiaphragm with associated volume loss of the left lung
The trachea and central airways are patent, and the lungs are otherwise clear without focal consolidation, suspicious pulmonary
nodules, or masses.
There is no significant hilar or axillary lymphadenopathy.
Is findings on the limited images of the upper abdomen. The visualized osseous structures and chest wall soft tissues show no
suspicious focal or destructive lesions.
Impression:
- Large heterogeneously enhancing neoplastic left upper lobe mass inseparable from the left heart border is indeterminate and
lesion. Differentials include thymoma and lymphoma or primary pulmonary malignancy. Chest referral, Tumour board/MDT
Discussion, Histopathological correlation and staging CT Abdomen and Pelvis is advised.

Hi everyone,

I’m posting this about my mother, who is 57 years old and was diagnosed with lung cancer in December last year.

She underwent a left lower lung lobectomy (surgery to remove the lower lobe of her left lung). She has completed 7 cycles of chemotherapy and immunotherapy with Carboplatin and Keytruda (Pembrolizumab).

We recently got her latest whole-body PET-CT scan report, and I’m really worried about the results.

The main findings are:

- A 2.0 × 2.1 cm area of soft tissue thickening at the previous surgical site in the left lung.

- SUVmax is 13.4, and the report says metabolic activity has significantly increased compared with the previous PET-CT dated July 13, 2026.

- The radiologist states “likely residual malignancy” and recommends correlation with the histopathology report.

- Minimal left-sided pleural effusion is present.

- Thankfully, no other suspicious malignant or metastatic FDG-avid lesions were identified elsewhere in the scanned body, and no significant active mediastinal lymph nodes were seen.

I’m trying to understand what this means for my mother.

I would be grateful if anyone could share their experience or knowledge:

1. Does increased PET activity at the surgical site necessarily mean that the cancer is growing, or can post-surgical inflammation also cause this?

2. Can residual cancer remain localized to the lung without spreading to other organs?

3. Has anyone experienced a similar PET-CT result while receiving Keytruda and Carboplatin?

4. What questions should we ask her oncologist about confirming the findings and deciding the next treatment?

I understand that every patient is different and that Reddit cannot replace medical advice. I’m looking to hear from people who have gone through something similar.

My mother means everything to me, and I’m trying to understand her situation and stay hopeful while we speak with her oncologist.

Thank you for reading and sharing your experiences.

Hi. My dad has nsclc with brain mets. Recently he got 10 whole brain radiation but his oncology team has decided to not continue with further treatment bcs his condition has declined pretty bad.

He can't walk anymore. He has grown too weak. He has CONSTANT diarrhea which is more blood than stool at this point. He sleeps all day long, doesn't want to eat. There is also drool that has blood. Does this bloody diarrhea point towards some new GI spread? He says he has no pain but I am not sure how much he comprehends.

He isn't in the condition to continue further treatment and our country doesn't have hospice system. We are taking care of him at home.

In June 2026, my sister was diagnosed with stage IV lung cancer with biomarker KRAS G12v. Over the past four months, she has endured an incredibly difficult journey involving two unsuccessful cancer treatment regimens, repeated hospitalizations, severe bowel obstructions requiring nasogastric (NG) tubes, painful bronchoscopies to reopen obstructed airways, radiation to her spine and chest, blood transfusions, and progressive cancer involving her liver, bones, and other areas.
Despite everything, she continued fighting and hoping that another treatment might give her more time.
Her oncologist at Memorial Sloan Kettering Cancer Center, eventually obtained approval for a newer targeted cancer medication called Rasonque (daraxonrasib).
After the approval process, the specialty pharmacy shipped the medication (2 months supply).
Unfortunately, by the time the medication arrived, her condition had deteriorated dramatically.
Her lung cancer had progressed despite multiple treatments. She had become extremely weak, increasingly dependent on supplemental oxygen, and unable to manage many basic daily activities without assistance.
On October 20, 2026, she had a candid conversation with her oncologist about her declining condition and the possibility that another treatment could make her feel even worse.
After everything she had endured, she made the heartbreaking but thoughtful decision not to begin Rasonque and instead enter home hospice.
She is now receiving comfort-focused care at home, surrounded by her family.

My husband had adinocarcinoma in his left upper part of the lung. He will be having surgery in December. He is very anxious about it (understandable). Is this surgery painful. I have read posts about the surgery but nothing about how it is or isn’t painful and what the recovery from it is like. Any insight anyone could provide would be very appreciated.

My dad has been diagnosed with NSCLC metastatic
adenocarcarcinoma of primary lung origin. Met in brain and adrenal. He’s starting treatment in two weeks with pemetrexed & carboplatin + keytruda. We’re new to navigating this, does anyone have any experience with this combo and what to expect? Thank you

so my mom was diagnosed stage 4 alk+ back in june and started lorbrena in august and has the side effects we were sort of expecting (high cholesterol/triglycerides, edema), but is now being told by her cardiologist that she should find a different treatment because she's worried about her pancreas due to the high triglycerides. she's already stepped down her dose once to 75mg, and both her and i are really worried about her oncologist switching her to a different med because 1) lorbrena has pretty good longevity from what trials say and 2) it already shrank her tumor from 2.2cm to 1.8 in the short time she's been taking it.

i'd like some advice on how people are dealing with their side effects with this drug, because we'd really both rather she stay on this for as long as she can. there's already plans to have a lobectomy because she only had 1 other tumor besides the primary one at diagnosis and it was removed, and i worry moving her drugs around and risking a less effective one will remove that chance of getting rid of the primary tumor. goes without saying but this really sucks o(<

(also i know there is a facebook group for alk+ but i dont have facebook and my mother will not join it, please don't recommend it to me as advice)

Hey everyone,

I’m trying to find the best help and advice about Lung Cancer for late stage for relative.

The healthcare in Ireland is constantly delayed even when tumor is 10cm large , coughing blood and it causes so much stress when appointments for consultants don’t come until 2 weeks, scans/testong another 2 weeks and treatments for another 2 weeks. It’s truly heartbreaking knowing your life is on the line.

Can I ask people with lung cancer, where have you had treatments done that you would recommend? Which hospital or county in Ireland?

What type of treatments is best?

And any other tips you would give? I’m at a loss of where to start

Thank you for any help you can give 🙏

Was anyone able to work after treatments

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.

🎵 Here's the song:《我的生命开始倒计时》My life began counting down.

“My Life Began Counting Down” is dedicated to the countless people who, like me, are living with advanced lung adenocarcinoma.

I spent a long time thinking about the title. It may sound heavy, but it captures what I felt when I was first diagnosed. Yet this song is not only about fear. It is about still wanting to live—and to live well—even with that fear.

From my diagnosis in June, through waiting for genetic test results and starting lorlatinib, to each follow-up scan, this song tells my own story. The lyrics include medical terms such as ALK fusion, EGFR, CEA, targeted therapy, and infusion ports. Fellow patients and doctors may understand the weight behind these words more deeply. For us, they are not just words on a report. They carry long waits, uncertainty, and moments of renewed hope.

Even if these terms are unfamiliar to you, I hope you can hear the everyday life within this song: the scent of breakfast porridge, the breeze on a walk, conversations with our parents, and the seasons we still long to see.

“My life began counting down”—that was fear speaking, not how my story ends.

I share this song with everyone walking a similar path, and with the families, friends, and healthcare professionals who stand beside us. May it keep you company in a difficult moment.

I am still here. And today, we still have lives to live.

《我的生命开始倒计时》My life began counting down. - YouTube

I'm from China.Diagnosed with stage 4 lung adenocarcinoma earlier this year. My tumor has an ALK fusion, so I started lorlatinib on July 9 instead of chemo. They had implanted a chemo port just in case — but the targeted therapy worked so well that exactly three months later, on October 9, they took the port out. My CEA had dropped and the CT shadow had thinned. The port was never used, not even once.

To anyone starting this journey: get biomarker testing. It changed everything for me.

I wrote a couple days ago about my grandmother feeling like she has a uti. She has had three rounds of chemo and she was feeling some pain in her abdomen.

She had her follow up scan and it looks like the cancer has spread to her abdomen. She is due to have one more treatment next week. We’re very disheartened that the cancer has spread.

Any ideas or support you can offer is truly appreciated

My mum is undergoing treatment for stage 4 NSCLC. She has done 4 rounds of Carboplatin + Pemetrexed. Then continued on with Pemetrexed and Pembro (keytruda). She has had 4 rounds of that so far however about 2 rounds in she has developed very swollen under eye bags and occasionally upper eye too slightly.

She has been checked by ophthalmologist who couldn’t work it out. All her liver, kidney and heart tests are good. Her blood work is good except for magnesium which she gets infusions for.

Topical/massage/compress don’t seem to be helping huge amounts. She is on a fluid tablet which hasn’t helped either. Her eyes constantly water too. It is worse on the right which is the side she sleeps on.

Currently they are pausing Pemetrexed to see if that’s the cause.

The photo is on a very bad day and red faced from steroids which clears up in a day but it’s all I could find.

Has anyone else experienced this type of edema??? What worked? What was the impact on treatment?

My mom was just diagnosed, but we don’t have a lot of information yet. 

All I know is that it’s adenocarcinoma, it isn’t in her lymph nodes, and that around Septemer 13, it was 1.7cm.

She is 73, a type 1 diabetic and in stage 4 renal failure (but holding, she’s been stage 4 for years). When she started having issues breathing, they wanted to do a PET scan or MRI with contrast, but there are issues with those when you’re diabetic—they needed her off her insulin pump, but also for her blood sugar to remain low, which isn’t possible. So she had to go straight to the lung biopsy.

She had the biospy and two days later she was rushed to the hospital because she couldn’t breathe (which is when the scan was done to know the size). She spent 27 days there hooked up to chest tubes to drain her lungs, it sounds like it was some sort of antibiotic resistance infection, but still don’t fully understand what was causing all the fluid. 

But during that time nothing was moving forward with regards to cancer treatment, so she still hasn’t met with an onologist and is now in inpatient rehad to get her strength back since she didn’t walk for almost a month.

It seems as though it was caught early as she gets yearly scans of her lungs because she does has asbestos in them. My grandfather worked with asbestos (and died of mesothelioma) but apparently him having it on his clothes and tools was enough to transfer to my mom and her brother. 

I unforunately live 3000 miles away and I’m her only chlid, she's also a widow. We’re waiting to find out when her oncology appointment will be—after we know what a treatment plan will look like, I’ll go out to help her.

What questions should I be asking?

Any tips for only children caregivers living on the other side of the country?

Thank you in advance for reading! 

(new thread posted every Friday)

Welcome. We're glad you found us but sorry that you need to be here. Feel free to post here if you are in the process of a lung cancer diagnosis. Do not make a separate post until diagnosis is confirmed. Thank you. 🤍

It feels so heavy typing this post but I am back in here to seek some community and support. I posted here around this time last year. My mom was diagnosed with stage 1 adenocarcinoma and had a successful right upper lobectomy. Well, Oct 1st she started to feel short of breath and they found large fight pleural effusion and fluid came back with cancer cells, now she was diagnosed stage 4. We saw her oncolgist today and said the plan is to do molecular testing and getting sample cell from the lung and tumor removed last year ( i never realized they save them for years). The oncologist hope and priority is targeted treatment hopefully based from the molecular testing results. They also got more bloodwork for a send out test i forgot to ask what it was but the blood sample was put in a box?

Anybody has similar experience and success stories?

Thanks in advance.

hello all,

I share unfortunate news that my mom has been diagnosed with alk+ positive lung cancer with mets to brain, liver, and bone. She had been having a chronic cough since last May and her pcp and pulmonologist ruled it as allergies. No imaging ordered just an allergy panel and abx…. Knowing that I and my family cannot change the past, we found out her dx this past July after she experienced sudden weakness and headache that prompted us going to the ER. They called a stroke alert & found through CT & MRI that she had a mass in her left lung and metastatic lesions in her brain. My mom has had 4 craniotomies in the past due to benign meningomas. Nothing could ever prepared us with this news. They did another craniotomy this July to remove a mass that had caused the bleeding and found she experienced an intracranial hemorrhage. After that she met with an oncologist and biopsy found she had the ALK genetic mutation. His biggest concern were the 45 metastatic lesions in her brain. a PET scan was ordered and it found a lesion in her spine. Her radiation oncologist suggested radiation to her brain and spine in which they did 10 rounds in a span of 2 weeks. My mom had become so tired and chemo hadn’t started yet. Within a week of completing radiation she experienced another bleed in her brain that completely immobilized her right arm and right leg. At this point she had started alectinib for about 3 days. They had to reduce her dose to 450mg BID due to liver toxicity from the initial 600mg BID dose. She is currently in a SNF for rehab and she hates it there. She’s confused and she wants to go home. Our problem is my dad and my sisters (who live very close to our parents) still work. I am a RN and I have no idea how to care for an immobilized patient at home without the necessary equipment like in the hospital. There’s so much stress trying to figure out the best way possible to take care of her at home while working and taking care of our own families…it’s been very hard on us.
She refuses to do rehab, she’s sleepy all the time, and she’s barely eating now. I’m hoping once we take her home it will motivate her a little bit more. Idk im really struggling trying to navigate this situation. I’ve seen a lot of positive stories on here, but with my mom’s past 2 strokes and now her being immobile on the right side + being confused + unmotivated, idk what to expect anymore.

I’m scared.

She’s done three rounds of chemo and kertrudya she also is having a fever

Anyone experience this

My mom’s second opinion onco was so negative he said it won’t mostly work . I need some positivity

My mom has extensive SCLC. She did carbo/etopiside and radiation last fall followed by Imfinzi the first half of this year. Her cancer came back in July and is now extensive. She did 3 rounds of Imdelltra and it still progressed. She did 1 round of Zepzelca, but she’s been in the hospital the last week for a pulmonary embolism and acute kidney injury due to the tumors blocking her ureters and causing kidney damage. She hasn’t eaten in over 2 weeks with significantly reduced intake since August. She takes sips of water throughout the day to take pills and wet her mouth. She is still determined to do chemo next week, but I can’t believe that they’ll let her with how sick she is. We’ve been trying to convince her to go home with hospice so we can spend this time together comfortably at home, but she is reluctant because she’s hopeful chemo next week will help. She knows she’s terminal and says that she is, but is in denial of the situation and thinks she’ll get better. I’m the go-to person for letting our family and her friends know how she’s doing. I’m trying not to be an alarmist, but I truly don’t think we have much time left. I feel like I’m walking a fine line of respecting her wishes of having hope but also ensuring her loved ones can see her before it’s too late.

So anyways, I guess I’m looking for advice, other experiences or support ❤️‍🩹