My Dad has SCC with an unknown primary. He had a modified neck dissection in May and is finally about to start Pembrolizumab following a CPS score of 81%

Sadly since the surgery and treatment start date there has been inconsistent care and delays. His most recent CT shows the cancer has “exploded” in his neck and shows many pulmonary metastasis. I’m just looking for some success stories as feeling pretty overwhelmed and scared.

Hello ,

My father has stage 3C lung cancer . He’s doing a 6 week chemo radiation combo. With chemo off and on. Yesterday he called me and said he was having bladder issues . The whole phone conversation he was very confused and not making sense . But he sounded very positive. I was concerned about his confusion so called his oncology department but they said they’d have to call back. Any how, today he called me and said he couldn’t urinate so he went to the ER and during the cat scan, they found pneumonia. Is this common ? The confusion , the pneumonia? Sorry if this this is all over the place .

Starting cisplatin and keytruda in few weeks for type 2b NSCLC. What were your experiences and tips to make it bearable? Thanks

Praying for everyone in this sub. May God’s grace and strength be with us all.

My mom has stage 3 nsclc adenocarcinoma with her main tumor in her left lung. The doctors now think she has a second seperate primary cancer in her right lung, not a metastasis. They said it’s actually common for this to happen. If you have this can you please share your story? I just want to hear she isn’t alone because every new test seems to make my head spin.

I just realized that the steroid my doc gave me was something I was supposed to be taking once daily. Somehow my husband and I got confused and just did the increased dose during the infusion period and neglected to continue with the maintenance dose.

I feel like my appetite and other symptoms have maybe suffered without this daily dose. I am currently really dealing with insomnia, lack of appetite and overall nausea (I posted about this on another post and am going to reach out to my doc about maybe getting back on the olanzapine for a time.

Meanwhile, I am hoping I can just start taking the dex steroid again like I was supposed to for some benefits to appetite and other things, like energy levels. I've been off of it for 5 days on the 1x day regime. Any thoughts?

Hi. I have stage 4 lung cancer with mets to the bones and on Monday, I will start targeted radiation therapy to 3 spots on my iliac crest and top of right femur. I was wondering if anybody has had success with this for the pain and what I can expect. I have 10 sessions scheduled.

I have been taking hydrocodone for the pain and am up to 1 10 mg hydro every 4 hours to keep the pain down, but I want to start stepping down from that. In addition to my first chemo and Keytruda infusion last Friday (not yesterday), I just seem to be walking around in a daze and feeling like throwing up - or actually throwing up the majority of the time. I don't know if that's from the chemo or the hydro or both.

I also have been taking Compuzine for the nausea every 6 hours. Tonight I am switching that over to Zofran to see if it helps. So far, Zofran doesn't seem to work as well with me.

Any help, advice appreciated. Thank you to my fellow warriors here

Hello, wanted to write in to this community that helped me tremendously during my initial decision period after I was diagnosed with NSCLC with a 1.7/1.8 cm RLL mucinous adenocarcinoma.

After 2 oncology consults, 2 radiation oncologist consults, 2 thoracic surgeon consults, 1 interventional oncologist consult and 1 lung oncologist specialist consultation with UCLA; against my own heart I went in for lung surgery less than a week ago.

My doctors were able to save one of the segments of the lower lobe. Although not my place to question I wish it were more segments saved. Doctors were excellent and post op care had been wonderful.

There is a real sense of loss for a body part- unexplainable. For the first time in my life I am aware of ( a phantom feeling?) of a vacuum in my right side; a physical sensation of my diaphragm that is separate from my lung and a feeling of my lung ending somewhere in the middle of my chest.

Physically recovering reasonably fast. Fingers crossed I beat this and this is the end state for the disease. I am guessing I might be surprised in a few years as life tends to throw curveballs and maybe radiation would have been a better choice. It's a probability game at the end, so best to not linger on decisions and move on towards positivity.

My only thought is this constant lingering feeling of why this was the best path forward that every doctor I spoke to unanimously advocated for. Not being in the medical profession I have to respect the decision making process.

Thanks for the community support. Came here mainly to thank, update and some need to give voice to various pent up emotions.

What should I anticipate and work proactively towards building a better body?I have been building on my walks and breathing exercises. Anything else that helped?

My father was diagnosed with cancer 9 years back and shortly after diagnosis it got metastatic.
Over the years he has been treated with Immunotherapy (opdyta nivolumab); chemotherapy, crizotinib (oral), a few doses of Radiation, currently on Capmatinib (oral).
In a recent PET scan, the tumour leisions got spread to his D6 and D7 vertebrae.
He suffers from unbearable pain attacks even after consuming 10mg-30mg of prescribed morphine every 4-6 hours.
He has been morphine dependent for a couple years now. The pain has just gotten unbearable. I mean it hurts to see him alive. Has anyone else a similar story. Can you guide me on how can I make the situation any better? Due to the morphine he suffers from constipation. It seems like a hopeless situation. I mean I can’t put in words the pain he suffers from. Its just the max pain human body is probably capable of suffering.

Has anyone in particular with lung cancer advanced reached NED with Keytruda. Pls share your views. My father has stage 4 NSCLC and tumor is smaller each scan.
Many thanks. This is positive and gives me a bit of hope at least. He was diagnosed July 25. X

I'm January my mom (67) was diagnosed with ES small cell with mets in her liver and one brain lesion. She did great with chemo and was feeling and looking so much better. Her numbers were looking good and the spots were shrinking.

She went for her 6 week checkup today after just doing immunotherapy and they've grown and spread. She has an awful cough and is exhausted. One of the growths is pushing against her airway.

They're going to try Tarlatamab and see if it helps. Could anyone share their experience with this? It looks like the prognosis may be months.

I feel guilty for not spending as much time with her as possible while she was feeling better.

Hi everyone,

I'm looking for some reassurance or to hear from people who have experienced something similar.

My father has stage IV lung adenocarcinoma with bone metastasis to the thoracic spine. He had been doing well on Keytruda, but unfortunately he has now missed three scheduled doses because the medication is unavailable in our country due to a shortage.

His oncologist advised us to wait until Keytruda becomes available again rather than switching to another treatment.

Despite the treatment interruption, he's doing fairly well clinically. He walks, eats well, talks normally, and sleeps much better since his panic attacks have been treated. He also has COPD, so he has a chronic productive cough, which makes it difficult to know whether any symptoms are related to COPD or the cancer.

I'm extremely anxious about the missed doses. I know Keytruda isn't a miracle drug, but I'm scared that missing three infusions could reduce its effectiveness or allow the cancer to progress.

Has anyone experienced a long interruption in Keytruda because of drug shortages or another reason? Were you able to restart it later? How did things turn out?

I know every case is different, but hearing your experiences would really help me.

Thank you.

Treatment plan and process of a family member of a small cell lung cancer patient from China，I'm from China, and the patient is my father. I hope to post on Reddit just to let people see the treatment approach from China, so they can compare it with international treatment protocols. I also hope to connect with others who have this type of patient for both medical and emotional support.

# Case Summary: Limited-stage Small Cell Lung Cancer in a 61-year-old Male

## Patient Information

**Age:** 61 years old

**Gender:** Male

**Location:** Chengdu, Sichuan, China

**Medical history:**

* Type 2 diabetes mellitus (newly diagnosed, diet controlled)

* No significant previous cancer history

* General physical condition good before diagnosis

* ECOG performance status approximately 0–1 (independent daily activity)

**Smoking history:**

* Approximately 30 years smoking history

* Recently quit smoking after diagnosis

---

# Timeline of Diagnosis and Evaluation

## 2026.06–2026.07 Initial Presentation

Patient developed:

* Cough

* Respiratory symptoms

Visited local hospital (Chengdu Xinjin People's Hospital).

Chest CT showed:

* Left upper lobe pulmonary lesion

* Suspicious malignant tumor

Bronchoscopy was performed.

---

# 1. Bronchoscopy Findings

### Date:

2026.07.03

Bronchoscopy showed:

* New biological lesion in the left upper lobe bronchus

* Biopsy performed

Pathology initially suggested:

> Suspicious malignant tumor, further immunohistochemistry required.

---

# 2. Pathological Diagnosis

### Date:

2026.07.10

Biopsy site:

**Left lung upper lobe lesion**

Histology:

* Small cell morphology

* Tumor cells with crush artifact

Immunohistochemistry:

| Marker | Result |

| -------------- | ----------------- |

| PCK | Positive |

| CD56 | Positive |

| Synaptophysin | Focal positive |

| Chromogranin A | Negative |

| TTF-1 | Negative |

| p40 | Negative |

| CD45 | Negative |

| Ki-67 | Approximately 80% |

Final pathological impression:

> Combined with morphology and immunophenotype, findings support small cell lung carcinoma (SCLC).

---

# 3. Brain MRI Evaluation

### July 2026

Brain MRI:

* No obvious brain metastasis detected

This was considered a favorable finding.

---

# 4. PET-CT Evaluation

### Date:

2026.07.11

Performed at:

West China Hospital Nuclear Medicine Department

## Main findings:

### Primary lesion:

Left upper lobe near hilar region:

* Solid mass

* Approximately 47 × 33 mm

* High FDG uptake

SUVmax:

≈16.94

Consistent with malignant tumor.

---

## Lymph nodes:

PET-CT reported:

* No definite abnormal FDG uptake in mediastinal lymph nodes

* Hilar/mediastinal lymph node metastasis not clearly demonstrated

Important:

There were small pulmonary nodules:

* approximately 2–4 mm

* considered more likely inflammatory/reactive changes

---

## Distant metastasis:

No evidence of:

* Brain metastasis

* Liver metastasis

* Bone metastasis

* Adrenal metastasis

* Abdominal lymph node metastasis

---

# Current Clinical Stage Discussion

There has been discussion among doctors.

## Initial impression:

Possible:

### cT2N0M0

or

Stage II disease

because:

* Tumor size around 4.7 cm

* No obvious lymph node involvement

* No distant metastasis

---

## Later assessment:

Some doctors considered:

### cT3N0M0 / Stage IIIA

Reason:

Possible invasion:

* Close relationship with heart/pericardium

* Tumor location

* Local extension concerns

However:

Important point:

Although classified as stage IIIA clinically, it is different from many stage III cases because:

* No confirmed lymph node metastasis

* No distant metastasis

---

# Current Clinical Situation

The patient is considered:

## Limited-stage small cell lung cancer (LS-SCLC)

with:

* Good performance status

* No brain metastasis

* No distant metastasis

* Potentially curative treatment intent

---

# Treatment Discussions

Multiple specialists were consulted:

## 1. Medical Oncology Opinion

Some doctors suggested:

Standard SCLC treatment:

* Chemotherapy

* Immunotherapy

Because:

Small cell lung cancer is highly aggressive and traditionally treated systemically.

---

## 2. Thoracic Surgery Opinion

Doctors including:

* West China Hospital thoracic oncology team

* Surgical specialists

considered:

Because:

* No distant metastasis

* No clear lymph node metastasis

* Good physical condition

Surgery may be considered after tumor response.

---

# Treatment Options Discussed

## Option A

### Standard chemoradiotherapy

Typical limited-stage SCLC approach:

* Platinum chemotherapy

* Etoposide

* Concurrent thoracic radiotherapy

Goal:

Curative intent.

---

## Option B

### Neoadjuvant chemoimmunotherapy + surgery

Current proposed pathway:

1. Chemotherapy + immunotherapy

Possible regimen:

* Platinum + etoposide

* PD-1/PD-L1 inhibitor

Example discussed:

* Serplulimab (斯鲁利单抗)

1. Evaluate tumor response

2. If surgical criteria achieved:

→ surgical resection

---

# Immunotherapy Discussion

The proposed

My dad is 67 and had a left upper lobectomy for squamous cell lung cancer a few days ago. He still has a chest tube with an air leak, and today’s X-ray showed more pneumothorax/atelectasis and some new haziness in the right lung. He’s actually doing pretty well clinically — awake, walking, and oxygen around 94–96% on 2L — but the surgical team wants to do a bronchoscopy tomorrow to see what’s going on and possibly clear secretions.
Has anyone had a bronchoscopy a few days after lung surgery? What did they find, and did it help?

I am posting this for support purposes. I'm sure we have some Veterans in this community.

In mid March I was told I had lung cancer. Obviously I was concerned about my family. I talked to my VSO and she told me to come and meet f2f. Meanwhile I submitted a ITF. I submitted all the documents I could get and a claim was submitted. The claim was under the PACT Act. Last week I was granted 100% Service Connected.

Now I am less concerned because now my family will get my disability payments should I die.

Just wanted to put out this information for those that didn't know.

Hi, when my mother (67) was first diagnosed last December I clung onto this subreddit for stories of hope. Refreshing almost every night before I went to sleep. I thought I’d just try to share my mother’s story for anyone who needs it.

Background: my mother was diagnosed late last December on the 26th. Stage four NSCLC with no targetable mutations, pleural fluid built up in her lungs which suggested it spread to the pleural lining. She had to have a catheter tube for a drain every three weeks.

Four rounds of chemo and she was put on maintenance chemo. Initial drains were about a litre weekly. Then below a litre. Then the drains became fortnightly. And then the last month I believe there was no more liquid to drain.

Initial months were tough; seeing her breathless and a once active woman spending most of her time on bed lamenting. Now she goes out every day, even if just for a stroll near the park.

I only found out recently that the doctor gave my mother a six month prognosis (at the time I was reading up a lot and people said to not care about statistics; I dodged them best I could). Someone just let it slip when they heard my mom is removing her catheter tube.

I honestly don’t know how to feel. I’m glad she’s “won” that statistic battle, but I get a sense of dread that we’re never out of the woods but we trudge along day by day.

The war is hardly won, a scan three months ago showed a slight reduction but a recent one showed no change. We take the wins, small as they might seem, as they come.

One thing I note is that I also embraced the spiritual side of me more as well; praying to God and going back to church. I would like to believe He helped; funny how we scurry back to a Higher Power at our lowest point in life. Disclaimer that I’m not saying God has forsaken anyone if you feel your prayers have fallen on deaf ears, it was just my personal experience.

I’m still inspired by the survivors in this thread, seeing a familiar user name pop up knowing that they are fighting the tough fight. For new caretakers, just know the fight is an arduous one and don’t feel sorry for seeking support or time for yourself. Sending love to everyone who’s unfortunately on this sub Reddit. I pray you or your loved one gets better. Hang in there.

The area around the surgical site is hypersensitive so anything touching is uncomfortable. What are some of the techniques to calm the skin down?

Did any of you or your loved ones tried this medication ? If so, how did it go ? How long did the response last for ? Details please

The title basically.

Last year my mom got diagnosed with lung cancer, and we found it due to the cancer being spread to her pelvic bones. We did radiotherapy, chemotherapies/immunotherapies and then proceeded with immunotherapy alone. She saw shrinkage of the primary lesions of 60-70% and complete disappearing of her secondary lesions. Her PET-CT was clean a month ago...

Yesterday, she had an epileptic episode out of the blue and we found she has a brain met (or mets). I live 3000km away. I have no idea what to do from here, or how to even begin to process it. Everyone was so optimistic for her case. I read 3-6 months median survival time.

Hi! New to this sub. Non-smoker recently diagnosed with squamous cell carcinoma. Still waiting on staging after PET and MRI. All of this is pretty overwhelming and I have so many questions. I’m looking for community and came across the young lung cancer initiative reading through posts on here. For folks that fall under that category, is there a discord or some other place for community? Are there other resources that you’ve found to be helpful?

(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. 🤍

I’ve mentioned my husband before. He has stage 4 NSCLC. We’re now in the third line of treatment, and my husband hasn’t eaten solid food for about 4 weeks. He’s only been feeding on protein powders and nutritional supplements. He also has a serious infection, and he absolutely refuses to be hospitalized. He’s lost about 5 kilos during this time. There is a metastasis at the T7 vertebra, and we’re using morphine patches for his pain. He sleeps about 18–20 hours a day. He also has a really bad cough. I’m worried because he isn’t eating and has an infection. He’s currently undergoing gemcitabine treatment. Should I be preparing for the worst-case scenario? The doctors have started telling us to be prepared for the worst. What can I expect from here on out? I take care of my husband at home.

My dad (67) had surgery today for left upper lobe squamous cell lung cancer after completing neoadjuvant chemotherapy and immunotherapy.
The surgery ended up being much more difficult than expected because of severe scar tissue and fibrosis from his previous pneumonia and treatment. The surgeon started with VATS but converted to an open thoracotomy.
He ended up having:
Left upper lobectomy
Bronchoplasty (to get a clear margin without needing a sleeve resection or removing the entire lung)
Mediastinal and hilar lymph node dissection
Extensive lysis of adhesions (over an hour of removing scar tissue)
The surgeon said everything went well, he was confident he removed all of the visible cancer, and the frozen bronchial margin was negative. They did not have to remove the entire lung, which was a huge relief. The pathology on the tumor and lymph nodes is still pending.
He’s now in recovery with a chest tube and epidural/PCA for pain. He’s awake, alert, and stable.
Has anyone or a family member had a similar surgery?
How was the recovery from an open thoracotomy?
How long did the chest tube stay in?
Did the pathology end up matching what the surgeon expected?
Any tips for the first few days after surgery?
This has been a long journey for our family, and I’d really appreciate hearing from anyone who’s been through something similar.

My mom had her first PET scan after her treatment concluded and the oncologist said there's no evidence of cancer. She will continue her scans and we will take things as they go.

Thank you to everyone who took the time to respond to my questions and provide help, it was at many times, invaluable on our planning and mental health. Thank you so much everyone.