r/lungcancer

Hi, my husband was dx with Stage 4 lung cancer 2 weeks ago. He will start chemotherapy tomorrow. Not waiting on biomarkers, etc. as there is an urgency to his treatment. Perhaps by round 2 (which will be 21 days), we will have information on immunotherapy and targeted therapy.

I have read posts here and this group has been extremely helpful. I'm overwhelmed. He is retired, but, I still work FT. We have lots of friends and family nearby who are willing to help. I just don't know where to begin. Side note: Plus, we have a dog who is very protective of my husband and it is making some interactions with "strangers"(who come to the house) difficult.

Hoping to hear positivity and possible resources.

Thank you so much.

Looking for experiences of people who have had either surgery or radiation for stage 1 lung cancer.

My mom is 68, had a wedge resection a few years ago and now there is a spot that lit up on PET scan. It’s small and she was offered surgery (lobectomy) or SBRT. She is having a very very difficult time deciding what to do. She is afraid of the recovery with lobectomy and worries about complications but also worries about recurrence if she settles for just radiation.

Curious if other people’s experiences and how they made a decision on one over the other.

Hi all, The reason for this post is to encourage patients going through the process to empower themselves by not just taking one answer as the only answer. My journey started in July of 2025 where several ground glass nodules were found on a CT scan being done for another reason. All my doctors told me its nothing, dont worry, just inflammation. I asked to be referred to a pulmonologist and they refused saying there was no reason. I knew in my heart they were wrong. My Dad and my Grandma both had lung cancer. Although I had not smoked for 20ish years, I knew that it was still a risk factor. I took my scan to Fred Hutch lung cancer screening in Seattle and asked for another opinion. They told me that simply by looking at the shape of it, they could tell it was likely very early stage lung cancer. They rescanned me in 3 months, no change. They told me it seemed early and indolent and to come back for another scan in a year. I reached out for two other opinions. one at MD Anderson and one at Virginia Mason in Seattle. The MD Anderson process was a little overwhelming for me and it was the option that was furthest away so I quit the intake process with them. Virginia Mason looked at it and said, "why wait, if you want we can try to.get it all now with a segmentectomy" Even though I felt like such a surgery was agressive being that the actual pathology was unknown I jumped at the chance. At this stage, not many others were going to give me the chance to do this. During surgery, the surgeon found a 2nd rare condition called thoracic endometriosis which could have been the root cause of some of the symptoms I was having that led to the cancer disxovery. It also could have caused other serious issues. He was able to take care of it when he was in there. The pathology came back and out of the 6 nodules, 4 were precancer and 2 were stage 0 lung cancer. I feel good about my choice and feel great that I found doctors willing to be proactive. Who knows if I had just accepted lets watch and wait as an answer how much further along it could go in the next year, or 2, 3 or more. The reason I am posting my story is to encourage the watch amd wait people out there. Dont accept watch and wait as an answer if you would prefer to get it out now. Get a 2nd or 3rd opinion if you dont like the 1st answer. Although it may not be the end of your journey as cancer can recur in a new area etc, it could change the outlook of your existing journey. Best wishes to all out there fighting the fight or taking care of someone who is. Life is precious.

Hi! I’ve posted a few times before and always find it comforting to hear from others who may have gone through something similar! My mom (60, NSCLC IV) has been receiving treatment since late October.

She received 3 rounds of carboplatin and pemetrexed (2 of those with keytruda). After 3 rounds she had already been hospitalized twice and she was taken off carboplatin because she had responded well/it was causing too much toxicity). Scans have shown great response, doctor shared that as of March she showed partial remission. After that, she’s been on just the pemetrexed and keytruda until a month ago - she developed immune related colitis from the immunotherapy and was put on high dose steroids.

Fast forward to now, she’s been in the hospital almost 2 weeks. She caught a stomach bug and it’s wrecked havoc on her due to ongoing issues with colitis and weak immune system (from the steroids). Her blood levels have been all over the place. Symptoms have not improved much since she’s been in the hospital. Now doctors want her to have a colonoscopy done due to new swelling found in the colon.

Basically…. Wtf?? This is honestly a nightmare. I am hopeful this is just a bump in the road but she’s scheduled to receive chemo tomorrow and I don’t think that’s happening… do any of you have experiences with gaps in treatment and everything still turning out okay?

Sending love to all of you!

I owe this group an update. 2 years ago I was diagnosed with Stage 4 non small cell lung cancer at a young age (mid 20s). I was extremely active in this group for about the first year and still recognize many posters today, but I needed to step away for a while to try and redirect some of my thoughts and free time away from cancer. Some of you have probably read a lot of my old posts from my old account.

When I was diagnosed I had tumors in my left lung, pleura, a large MPE, and enlarged lymph nodes. It was stage 4.

I immediately jumped into surgery to have a biopsy, pleurodesis, and to have the fluid drained from my left pleural space. There was no cancer found anywhere else in my body.

My biopsy came back with no targetable oncogenic drivers or mutations so targeted therapy was out of the question.

I started treatment in the POSIDEN regiment, and completed 6 cycles (12 rounds) of dual chemo (carboplatin + taxol) and dual immunotherapy (imfinzi + Imjudo) over the course of about 4 months. This shrunk all nodules by 80% and some disappeared completely. However a few reminded, but my oncologist was so confident in my response they wanted to continue on single line maintenance of just immunotherapy….

I continued on single line immunotherapy for 3 months and we saw progression. No new nodules, but a few started growing and my lymph nodes enlarged again so it was time to switch treatment. My oncologist enrolled me into a clinical trial which I endured for 3 months (it was a new immunotherapy + a new anti body drug), but no luck, my cancer progressed further so I stopped the trial.

I was about 11 months into my battle at this point, and my oncologist decided we would do another chemo regiment (IMPOWER 150) which was dual chemo again plus immunotherapy and avastin, and we added 15 rounds of concurrent radiation to about 4 different areas of my lung.

So after another 12 rounds of dual chemo, immunotherapy, avastin, and 15 rounds of radiation, my cancer was all but shrinking again, this time to the tune of about 70% of all nodules.

By this point I was about 15 months into my battle, and my oncologist wanted to keep applying pressure with single line chemo therapy, immunotherapy which continued for about 7 months which brings us to today. About 2 years in, 4 biopsies (surgical) 40+ rounds of chemotherapy, another 40 or so of immunotherapy and a trial drug, and 15 rounds of radiation.

My last 3 pet scans (one taken in December, one in February, and my last one in April showed “nothing that looks like cancer” according to my oncologist. The tricky part has been that the inflammation in my lung has made it difficult to rule out any nodules for sure but since my last 3 pets have all been trending downwards in FDG avid levels, we’ve come to the conclusion that we are “in remission as far as I can tell” according to my oncologist. There is a little bit of skepticism from other members of my care team as to whether or not I’m completely in remission since the inflammation has muddied up my image a bit, but at the end of the day this is my 3rd scan in a row where there is no visible cancer to target, and “as far as I can tell” from my oncologist is good enough for me, for now.

While reviewing my last scan we decided to drop the chemo because I’ve done so many rounds im starting to feel a bit worn down, and since there is still nothing for us to target as of now, I figured I’ll enjoy some time off chemo while things aren’t urgent.

Who knows how long it will last, but for now I’m just working on adjusting to living my life the way I want to after such a long, regimented, and consistent battle.

This group gave me tons of support early on in my journey when I was active and I know how much hope these kinds of stories can provide so I wanted to share with you all. Thanks for reading and providing the support.

Does anyone have experience with Risk Reveal testing?

I had a lobectomy of my left lower lobe to remove stage 1A NSCLC. Pathology all came back favorable but the Oncologist recommended this test.

Hello and hope everyone is having a good day. I have come to share my story of success at six months of treatment.

I was staged 3b Squamous Cell in left hilar, unresectable. Treatment started on chemotherapy and IMRT the week of Thanksgiving. Which really kind sucked because family was in town, everyone went to my nephews house for a dinner. And I was staying home and was afraid to eat. Because the nurse cautioned me about stuffing my self full of food while on chemo.

Any how, I made it through six weeks of that. And started on the durvalumab every 28 days.

I am at six months of treatment now and just had a PET scan reviewed with my doctor.

The outcome was Complete Metabolic Response and Full Remission. 😀

It is just miraculous how current treatments can effect these cancers. I am so grateful for this community who was there to listen to me , and help with questions and guidance along the way. And beyond relief that I feel like for the first time in months that I am no longer just a cancer patient. I am now a survivor and living the rest of my life.

Hi All,

My mum (64) stage 4 NSCLC has just had her 3rd round of Chemo (carbo/pemetrexed)

During this 3rd round - when the Carbo was being transfused she had a reaction which made breathing very difficult for her. She ended up needing Adrenalin to calm her vital back down. She got about just less than half way through the Carbo when it happened.

Has anyone else had this?

What happens next? What impact on future treatments does it have?

Does the reaction have any impact on immunotherapy success?

She is meant to have 4 rounds with Carbo then just pemextred and Pembro moving forward.

My father is 67 years old and has diabetes, high blood pressure, and heart disease. A few days ago doctors found fluid around his left lung and a mass in the left upper lung on CT/PET scan. They suspected primary lung malignancy and performed:

Chest tube/drain

Talc pleurodesis

CT-guided biopsy

The chest tube has now been removed and we are currently waiting for the biopsy/histopathology report.

Right now he is home and stable overall:

Oxygen mostly around 94–95%

BP relatively okay

No major fever after the procedure

No severe chest pain

But he is still:

Very weak

Gets short of breath when standing/walking a little

Has very low appetite

Feels nausea/dil kharab often

Eats only small amounts of soup

Occasionally coughs mucus

Gets sweaty sometimes, especially on the head

He is currently taking:

Ecasil (Linezolid antibiotic)

Heart medicines

Insulin for diabetes

We are trying to give him:

Daal soup

Goat/chicken broth

Kaddu soup

Eggs

Light fluids

I know nobody can diagnose online and we are following with doctors. I’m just emotionally overwhelmed and wanted to ask:

Is this kind of weakness/appetite loss common 4–5 days after pleurodesis and chest tube removal?

How long did recovery take for others?

Did anyone experience nausea and poor appetite from Linezolid?

Any tips to improve recovery, breathing, or nutrition?

Would really appreciate hearing real experiences while we wait for the biopsy result ❤️

My mom was diagnosed with stage 3C NSCLC a few weeks ago. She’s a non-smoker who has been very healthy until 7 months ago.

Long story short she was misdiagnosed with “aspiration pneumonia” for 7 months while in and out of the ER and hospital and lied to about biopsy. We were told it wasn’t cancer until we got a second opinion. Needless to say I’m angry and scared for her and scared the doctors wasted time being incompetent so now it’s not operable and scared treatments won’t work.

She starts chemo tomorrow and radiation the next day. I’m reading so many bad things about chemo. Do people survive chemo? Any tips or ways to prepare for chemo and what should we expect?

The liquid biopsy biomarker testing came back and there are genetic mutations… but it’s KRAS and not the kind with targeted therapies. It’s KRAS K117N, which apparently is rare I can’t even find it when searching here. Also CBL and TP53 which apparently is a bad genetic mutation to have too.

Is there hope that the tissue biomarker testing will come back with different gene mutations that have targeted therapies? Does anyone have experience with these gene mutations? Any stories of hope? With these genetic mutations, should we look at somewhere like MD Anderson?

Hi everyone, just wanted to pop on and ask a quick question as my mum is really struggling at the moment! Did anyone else experience nausea following radiotherapy treatment? My mum is 2 weeks out from a 12-session course of radiation to the upper left lung and mediastinum, and has been nauseous since around the 5th session. The radiologists have said it can’t be related as the radio isn’t close enough to her stomach, but I can’t see what else could be possibly causing it? Some days she is okay, others the nausea is really severe. She’s also lost her appetite and did have a bit of pain swallowing, so surely nausea isn’t too much of a stretch? Just wanted to know if anyone else had this! Thanks :)

Edit- also want to add that she lost her voice around the same time she started feeling sick, and it’s still not fully returned. Anyone else?

Does a PET scan cover head to toe, or does it depend on what the doctor orders? We’re a little concerned about brain mets at this point and thought that a recent PET scan would provide more information. There’s no commentary in the results from the reviewing radiologist about the head at all.

We don’t want to subject my mom to additional procedures she doesn’t need, and based on her experience with the brain MRI about six months ago, we really don’t want to even ask about having one of those. (It’s really really difficult for her to lay still and not cough for 15 minutes or more).

Of course, we’re putting a question into the medical oncologist to determine what was ordered, but just curious as to what the general experience is.

Ciao a tutti,
scrivo per avere un confronto o leggere esperienze simili riguardo alla situazione di mia madre. Ha 61 anni, è sempre stata in ottime condizioni di salute e non ha mai avuto problemi medici significativi prima di questa diagnosi.
Abbiamo appena ricevuto il quadro molecolare completo e purtroppo la situazione è più complessa del previsto. Cerco storie di chi ha affrontato un profilo simile o pareri su cosa aspettarci.
Diagnosi e Quadro Clinico:

• Tipo: Adenocarcinoma polmonare non a piccole cellule (NSCLC).
• Stadio: IV (Metastatico).
• Localizzazione Metastasi: * Polmone sinistro (massa principale di circa 4cm).
• Linfonodi mediastinici.
• Fegato (lesioni di 9mm e 6mm).
• Surrene destro (nodulo di 13mm).
• Ossa (lesioni multiple a vertebre C7, D2, L3, L4, sterno, costole e bacino).
Profilo Molecolare (Test NGS):
• PD-L1: Negativo (<1%).
• Mutazioni = nessuna
• MSI: Stabile.

Situazione attuale:
Mia madre sta bene fisicamente (Performance Status 0), non ha sintomi invalidanti al momento. L'oncologo propone la combinazione di Chemio + Immunoterapia come standard di cura, data l'assenza di bersagli molecolari e il PD-L1 negativo.
Le mie domande per la community:
1. Qualcuno ha esperienza con una diagnosi così diffusa (fegato + ossa) in una paziente giovane e sana?
2. Con PD-L1 <1%, quanto è comune vedere una risposta duratura alla combinazione chemio-immuno?
3. Cosa dobbiamo aspettarci realisticamente in termini di "cronicizzazione" della malattia? Le medie statistiche parlano di 18-24 mesi, ma quanto incide l'ottimo stato di salute iniziale?
4. Consigli su come gestire le metastasi ossee multiple oltre alla terapia sistemica?
Grazie di cuore a chiunque vorrà condividere la propria storia o darci un po' di speranza razionale.

My father was diagnosed with stage IV cancer last week. He has COPD and a long history of smoking. 2.5 years ago they found spots on his lungs but they were too small to raise concern (the size of the tip on a pen), so they thought it could just be scar tissue from the COPD. He went to some follow ups, but nothing ever came of it. 6 months ago he had a stroke, so he decided he wanted to get everything checked out again and the most recent scan on his lungs showed the nodules had grown. He had a pet scan done and a lymph node near his collar bone showed level 4 activity and one near his armpit had activity at level 11. They removed the armpit lymph node and the biopsy came back as small cell cancer. What is confusing is that since his lungs barely showed any activity on the pet scan, they aren’t confirming that is where the cancer originated from. They are running more tests, but since the cancer traveled to the lymph nodes it is classified as Stage IV. He will have an MRI to make sure nothing spread to the brain. He starts chemotherapy on May 18th, 3 days in a row then 18 days off for 4 rounds. They also mentioned immunotherapy. I wasn’t at the appointment with the oncologist when he got the news. I guess I’m confused on if he has stage IV lung cancer. I thought that is what small cell was, but they aren’t confirming due to the pet scan levels in the lungs? Has anyone had a similar experience or any insights? I was hoping the appointment would provide us with more answers. They didn’t give a prognosis or anything either. I just have no idea what to expect.

My father died yesterday because of small cell lung cancer. He survived 6months after the diagnosis. If somebody is going through this hard journey you can ask me anything because I’ve learned so much about the disease in these last 6 months. Please let me know if I could be of any help.

i’ve made a few posts here before, i’m just looking for some insight if anyone’s had similar stories bc i just had knots in my stomach after today’s news. my dad is stage iv nsclc with bone mets in his hips and pelvis region, back, and ribs. he began docetaxel a few months ago, i believe he got through 3 rounds of it. he felt the effects of the chemo a lot. he ended up getting pneumonia just last week and was in the hospital for about 4 days. they got him feeling a lot better and he had a pet scan earlier this week and met with his oncologist today, as he was supposed to have his next round of docetaxel tomorrow. i wasn’t at the appointment, but was told it was all pretty vague. his oncologist just said the cancer got “overall worse” and that they would not be doing any chemo tomorrow to let my dad’s body recoup more. they also said they were going to stop the docetaxel completely as it doesn’t seem to be working and are going to try gemcitabine. i’m just not sure how affective this will be with his bone mets. we’re also extremely disappointed the docetaxel didn’t slow the cancer progression at all. my dad’s a hell of a fighter, but i see it all taking a toll on him, and my heart breaks. no mutations and i’m assuming immunotherapy is not an option if it hasn’t been brought up by now. he was on keytruda at the beginning of his cancer journey a few years ago and was on cisplatin before it stopped working and was put on docetaxel. any insight on similar stories would be very appreciated

edit: i should also add he smoked cigarettes for decades, quit when he found out he had cancer years ago, and has picked up vaping for probably over a year now

Hey, gang-

I hope you’re taking care today. I just wanted to share that today, I took my mom on a walk in beautiful weather around the park. It wasn’t too long, but it was beautiful. She expressed wanting to get out of the house more & go for a walk but didn’t want to go alone. So today we went on that walk.

My mom was diagnosed a couple of months ago with stage 4 NSCC with bone & 1 small brain met. Shes been achy & ill from the chemo. She started Keytruda last chemo round without any apparent additional side effects.

I know nobody can put time limits on people. I’m just really grateful I got to walk with her today. That is all.

Xo

My mom was diagnosed with stage 2b, non-small cell lung adenocarcinoma earlier this week. During her PET scan, they saw a spot on her breast (maximum SUV of 3.3). She had a mammogram today, and we received the results that there’s a 1.9 cm solid mass with high suspension for malignancy. Just wondering if anyone has faced both lung and breast cancer at the same time? When it rains it pours.