I enclose this man's bronchoscopy and histopathology report which shows malignancy with adenocarcinoma in the right middle lobe and the demonstrated lymph nodes. Accordingly, I have sent him for an Oncology review for the appropriate palliative chemotherapy.

Non-small carcinoma. Suspecting poorly differentiated adenocarcinoma

Is it going to be the most horrible decline for the next 3 years with losing hair, etc? he has already lost kgs. Only 48kgs now, 155cm height. Still walking and active but can't breathe fully. The doctor said he couldn't fly or drive; he was supposed to go overseas for a wedding for 4 weeks.

Now, I'm just waiting for an oncology call from the hospital, hopefully from Chris's O Brien Life House in Sydney.

Do you have any suggestions for the best centre in Sydney? They said it is all pretty generic. Doc sent it to Bankstown Hospital and RPAH; I'm waiting for whoever will call first.

I have not told a soul. I don't have the guts to break his, my mum's, or my siblings' hearts. It's been 24 hours.

(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. 🤍

My mum has just been told she has small cell lung cancer , she seems fine in herself except her breathing was bad. She’s had an airway stent put in and is now feeling much better.

After doing some research , the 5 year life expectancy doesn’t look good. I’ve also read it’s one of the most aggressive types of lung cancer.

Is there anyone who can share any stories on theirs or their loved ones small cell lung cancer diagnosis , how fast do you deteriorate? Has anyone lived past 5 years ? Thank you

So my mother’s cancer was caught because of MPE and once had it drained but it came back. It has been 2 months since we know of her having cancer and 1 month since official diagnosis and yet no start of treatment by the doc. So we have been trying everything we can on our part like keto diet, exercise, yoga, herbal medicines and whatever white powder thingy our relatives suggested (it’s not drugs I tested). Our relatives that suggested it also said to have effusions and tumor and was unable to walk(?) but somehow she is doing fine after using it they said and has been a year since she’s been on that white powder thingy. And after my mother started using it her MPE has decreased a lot we think. She was unable to walk or lay down quickly without coughing. It was non stop coughing and now suddenly little to none. Haven’t had a scan again yet but is it possible for MPE to go away without medications? Or was with because of that white powder (I doubt it) but still only after she took it did she became all active again. She is stage 4 nsclc adenocarcinoma btw and no other mets thankfully(?)

Hi all. First time posting here, but I’ve been a member and a quiet reader since my mom was diagnosed earlier this year.

I’m not exactly sure why I finally built up the courage to post. Maybe I’m looking for support? Guidance? Or just a place to vent?

My mom (68f) was diagnosed with stage IV adenocarcinoma in February of this year. For some background, she’s a very active, independent woman and, of course, used to be a smoker. She smoked for many years and had lung nodules, for which she was getting yearly PET scans to monitor for changes. She tried quitting several times but just couldn’t. In the summer of 2022, she had a PET scan, and her PCP said the results were normal/unchanged but referred her to a pulmonologist in case her condition “got too much for her to handle.” Of course, my mom didn’t call the pulmonologist and went on with her life after getting the all clear from another year of scans. During this time, I had moved from our home state of Pennsylvania to California, so I wasn’t present in person.

In the summer of 2023, she was apparently feeling more fatigued and started experiencing crackling sounds at night when breathing and lying flat. She didn’t tell anyone about this, so I had no idea something was wrong. In 2023, her PCP also retired, and she got a new one who wouldn’t order the PET scans, saying she didn’t have cancer, so it wasn’t necessary. When I was home for Christmas in December 2023, I heard her wheezing and thought she had pneumonia, so I took her to the doctor. She had a CT scan in January 2024, which confirmed pneumonia diagnosis and also revealed masses in her chest. They biopsied the largest mass in January, and her first oncology appointment in February confirmed the stage IV lung cancer diagnosis. During this initial oncology appointment, they also reviewed her 2022 PET scan, which, according to the oncologist, showed signs of cancer even back then—at stage I. So, essentially, from summer 2022 to her diagnosis in 2024, the cancer had just continued to grow and grow.

My mom of course blames herself for not going sooner. But like everyone does, she thought this couldn’t be me. We have been through a lot of trauma in our lives, and my mom has worked so hard so she just thought karma was on her side. Foolish I know. I think she was also scared to admit to herself that she needed to go to the doctor. She had several physicals and doctor follow ups as well, none of which alerted her to any issues with her health. And at the time accounted her fatigue to her age and crackling to her smoking.

In January 2024, she quit smoking as soon as she got the CT scan and realized the news wasn’t good. In the grand scheme of things, she’s doing relatively well with chemo and immunotherapy. The masses are shrinking, but ultimately, there is no cure. I moved back as soon as I could in March of this year.

I know there’s no going back, but I’m struggling so much to cope with this news. My mom spends nights thinking about all the “what ifs”: What if she’d called the pulmonologist? What if the doctor had told her more? What if she’d quit sooner? What if she’d gotten treatment at stage I—would she be past this by now? Did her PCP overlook something on the scan? I just have so many questions, even though none of it changes anything.

All this to say, cancer truly sucks. I have no idea where life will lead us, but I wish all of you the strength to keep moving forward. Please pray for us, and I’d love any advice or words of encouragement. ❤️

Hello everyone,

My liver levels have been increasing with every immunotherapy infusion. Last week my doctor suggested I do the infusion but come back in 1 week (today) to check how high the levels are getting again and debate if I should continue the next cycle of immunotherapy before liver damage ignites.

I got my results back and it’s still high…

I’m just curious if anyone else had to stop immunotherapy treatment because of high liver levels..

Also if anyone can please share what their levels were when they had to stop treatment.

Thanks 🙏🏻

What does the term “minimal fullness” mean with regard to pulmonary nodules???

First off, english is not my first language so sorry for a few mistakes, this comes straight from my heart.

i'm a quiet reader in this channel since my dad got diagnosed with lung cancer back in May 2024. It was a very painful and hearbreaking fight but he ended up losing the battle peaceful in his sleep yesterday October 30th.

Seeing how weak my dad got over the 5 months was very painful for me to see. He lost 30kg weight in the last months (103kg at the start of 2024, 68kg or even lower till yesterday), no more fat on his body at all.

He was a very heavy smoker, he was smoking so much cigarettes per day (not only cigarettes, he was also smoking vapes and other stuff) he was very very addicted. He had a very hard childhood, his parents passed away when he was not even 10 years old. He started smoking at the age of 12, he passed away at the age of 61, so he was a smoker for nearly 50 years.

The symptoms started in 2023. He was coughing a lot, shortness of breath, chest pain, he got tired very fast and more, my dad was very scared of hospitals because of his parents. He was scared, that he never comes home again, once he's in the hospital, so he went to his family doctor in March 2024, no tumor diagnosis at all, the doctor said that it could be a infection in his throat, but it wasn't.

2 months later in May 2024 he finally went to the hospital and the official diagnosis was tumor in his lung.

He went to the oncologists in late May and the first radiotherapy started in mid June till Mid July. During the radiotherapy he felt pain in his right shoulder. He couldn't move his arm at all for the last 3 months of his life. Once the radiotherapy was over mid July, he went back to the oncologists to start the chemo, but they found more tumors in his body (a brain tumor and more), the tumor spread like crazy through his body, so he had to do another radiotherapy from mid September till October 9th. During the 2nd radiotherapy things got even worse, the tumor spread to his right hip, he couldn't move his right leg at all, the tumor started to attack his bones, doctor said he has a hole in his hip (in his right shoulder aswell), that's the reason why he can't move his leg and arm. We got him a walker for a week and later a wheelchair.

The 1st chemo started October 15th, he was very very weak but i believe in wonders. Even when the chance is 0,00001%, a chance is still a chance. I was praying to God everyday for things to get better.

He got weaker, before the 2nd chemo we brought him a wheelchair to get him to the oncologist, because it took him nearly 2 hours for a 300m walk from our house to the oncologist. So we brought him a wheelchair to make things a lot easier for him/us.

He got weaker and weaker from week to week, it was very sad to see. On Oct 27th he felt very weak and slept a lot, it was hard for him to breathe, maybe we should've get him to the hospital on this day, he asked for a lung ventilator, to help him breathe. His oxygen saturation was under 90%

Oct 29th, after his 3rd chemo, he got a lung ventilator from the Doctor. He used it at the same night to breathe better while he sleeps. It actually helped him sleep better, he slept from 8PM to 11PM at this night and went back to sleep at like 2AM on October 30th.

In the morning/midday my mother was looking in the room a lot of times (Dad sleeps alone), he was still breathing and sleeping. She was looking in the room once again at like 1:50 PM and he was looking around the room (it felt like he saw something in the air) but went back to sleep a minute later, still breathing! My mom tried to wake him up at this moment, cuz he was sleeping from like 2AM till 2PM, but he went back to sleep, but is still breathing.

10 minutes later at 2PM she was looking again, no breathing at all, my mom told me to call the ambulance, i did.

I was doing chest compressions on my own dad, until the ambulance came, looking at my lifeless dad while doing chest compressions for 5 mins was traumatic. I was pressing and pressing for 5 mins straight, looking at his face, hoping the he wakes up, but it felt like there's no chance.

The ambulance arrived and was trying to bring him back to life. No chance. they stopped after 5-10 mins because things would get worse, if they bring him back to life, because of the Tumor. He was pronounced dead.

I'm sad that i lost my dad at a young age, i turned 22, three days before his death and he died at the age of 61, which is way too young. But i think it was the best thing that could've happen to him, his death was very peaceful, he died in his sleep, i think his breathe just got shorter and shorter till his heart stopped beating.

He's now finally free from his pain and he's in a better place now, i know that for sure.

RIP Dad, you'll be missed.

Last Friday, my father (65 years old) had his first chemotherapy (carboplatin and paclitaxel). It lasted a few hours, and he will have to repeat it in three weeks along with radiation therapy. I see him very physically drained; he often lies on the couch, feels weak, has diarrhea, has started to taste a metallic flavor in his mouth, is nauseous, and has no appetite (he hasn't eaten today). When will he start to feel better? I tried to prepare some yogurt with a bit of nuts, chia seeds, raisins, and pieces of apple for him, but he refused because he felt too nauseous. Tomorrow I will buy nausea medication.

As if that weren't enough, 10 days ago he underwent a bronchoscopy during which they cauterized a small piece of tissue near the larger mass that was causing him to cough up blood. Thanks to this procedure, they resolved that issue. Unfortunately, however, the numerous bronchoscopies he underwent around that time caused him to lose his voice and develop a cough with phlegm, which he is treating with a thermal humidifier (recommended by the bronchoscopists, that seems to be working).

The situation is very stressful; I am trying to be strong for both of my parents. I spoke with the oncologist, who told me that it is stage 3c, that the goal is curative, but we cannot predict how he will respond to the therapy. If the disease progresses, the goal will be to try to manage it with immunotherapy or possible targeted therapy (we still don’t know if he has the EGFR mutation).

If he is feeling this bad now, I can’t imagine how he will be when they combine it with radiation therapy. Will the next chemotherapy be this heavy or lighter? I really don’t know what to expect.

After my chest CT and a positive PET scan, the doctors suspected lung cancer. So, we packed up and drove 1,300 miles to be at MDA. I had a CT-guided chest biopsy on Friday, which led to a pneumothorax, and I needed a chest tube for the weekend. That was incredibly painful. They removed it on Monday, and today, I got a call from my surgeon’s PA with unexpected news—my biopsy showed no cancer! I was overcome with relief and joy.

However, there appears to be some type of infection, so I need additional blood work and will have a follow-up chest CT in mid-December, with an appointment to see the surgeon the same day. We’ll be staying in Texas until then. I’m still processing all these emotions; today has been a rollercoaster. Thank you so much for the support from this incredible group. I wish everyone strength and success in your journeys fighting LC.

Hi all, very sad moment for us and my family, my dad has been diagnosed with small cell lung cancer that has metastized to the lymph nodes.

Unfortunately it is stage 4, also he has a large lump in his neck. The answers were was they do not know yet until oncology appt. Chemo was the main start off point for this. May I please get help with some insights at this time with people who have experience and also are fighting it, how did you go and also are you handling well, how many years

Kind regards Thank you all for your compassion

As the title says, my grandmother has lung cancer, which has unfortunately metastasized to the brain. We found this out, two days ago, when she suffered a seizure due to one of the tumors in the brain rupturing. She has since told us that she wishes to fight until she can no longer fight.

I want to make it clear that my family and I are in complete support of her and her wishes to continue fighting since chemo and radiation did not work as well as everyone had hoped. What are some possible treatments or medications that could potentially aid her?

Hi everyone - How long do lung lymph node biopsies generally take? My husband had a cervical mediastinoscopy on October 25 to biopsy the station 7 and 11R lymph nodes, however only the station 7 lymph node was located and biopsied. We are anxious for the results because it will determine if he has Stage I or Stage IIIa or b NSCLC, and therefore determine treatment. He is ready to get started and fight!

I (65f) have sclc and am ned at the moment. My primary care physician is pushing for me to get a mammogram because she has the gene for breast cancer and had a double mastectomy. There’s a history of breast cancer in my family-I’m the first with lung cancer. But do I get a mammogram? I kind of feel like it’s pointless but idk. Anyone have any suggestions?

How long did your person survive from initial diagnosis until their death? What treatments did they do?

Dealing with my mom. She had initial radiation on her lungs (2x a day for three weeks, 30 sessions total), had four rounds of chemo, and had PCI radiation on her brain (1x a day for two weeks, 10 sessions total). They are talking about maybe doing immunotherapy next. She had initial tests in January, had results in February, and official SCLC diagnosis came in March. She started treatment in mid-April.

What has been your experience? I’m looking for timelines and experiences. I know they will differ from person to person. I want to hear what people have been through though.

I appreciate any insight or information you’re willing to give. Thank you.

Hey do like the caption says but with a bit more details. My grandma is 65. (Her husband my grandad died of cancer 3 years ago of cancer) anyhow. She has lung cancer. It was found in brain, brain surgery was successful, after radiation she had another pet scan before starting chemo and now it’s in her lymph nodes. I live in another state so need to know when to head back home. (Went for a week while she was doing radiation). She seems the same no changes in behavior or function. I seen it makes her 5 year survival rate to only 8.5% but would rather ask real people instead of Google. I also get married in February would she be here that long? Just 3 months away.

In August my mom (53) was diagnosed with stage 4 poorly differentiated squamous cell carcinoma ( I may have butchered that) It has also spread to her other lung/brain.

She finished radiation on her brain a couple weeks ago. Last week, she started chemo/radiation on her lung and it's really really hard on her. She is constantly in pain. Like, bawling in her bed pain. She's also not sleeping.

She has talked to her Dr about not being able to sleep and the keep prescribing her anti-anxiety and anti-depressants. Is this normal? Other than feeling scared and worn out she doesn't struggle with depression or anxiety. The meds actually seem to make her a bit snappy and she's still not getting sleep. Should I push for something different or is this a normal thing they give chemo/radiation patients?

My other question is, do they not prescribe pain pills to cancer patients? She doesn't have a past with any drugs/narcotics. Anytime she asks for pain meds they tell her "We try to stay away from narcotics" I had to take her to the ER to get her a small script for pain. Is this a normal thing? I assumed comfort would be a top priority in a situation like this but I'm aware I could be very wrong. Is this something I should also push for?

I guess I should add that she does use weed gummies on the regular. In the beginning, they helped but now they aren't doing much for her.

Any advice is welcome! Sorry for the rambling and the format. I'm using mobile for this post.

I just had a pneumonectomy 3 weeks ago where they removed my entire left lung and I was just wondering how long it would take for me to feel somewhat normal again. I’ve been coughing non stop no matter what I do, and doing simple things like taking a shower have become a nightmare. I’m 16 and was wondering if that had any effect on my recovery as well. I feel really weak most days and I’ve just been really down thinking about how the rest of my life is gonna go

Mom started at 80mg then lowered to 40 mg because of side effects (low anc & wbc, rashes - expected side effects). She’s sensitive to the side effects, we’ve noticed. She feels worse on tagrisso vs chemo.

Just curious to know if anyone has stopped taking Tagrisso all together and what was your MD/provider’s recommendation? Any side effects or risks?

Thank you in advance.

I have been experiencing lot of neusea and vomiting. The meds haven’t helped. I know that ppl have said that THC gummies can help. It’s legal where I live but don’t have experience-just curious about any experience that others may have had.

Hi all. Currently sat in hospital with my poorly mum. She started off 2 months ago with a cough and cold which we thought was Covid/flu. She started getting weaker, more tired and loss of smell and taste, a smaller appetite, which again we put down to a virus. She literally didn’t leave the house for 8 weeks. She also lost 3 stone (2stone with what we believed was diet and 1 stone when her appetite reduced) Lowest weight is 7 stone 2 at 5ft tall. Long story short we were told to go to a&e as she had very high calcium levels in her blood. A chest x ray showed a large mass in lung. 9 centimetres big. We were told that it was most probably lung cancer and were to have more tests. She had a ct scan (I think) which showed the adrenal gland lighting up. Been told that she is too weak for treatment and a bed and commode has been delivered to our house. A biopsy was going to be done tomorrow but has been cancelled as she is so weak. I basically feel like there’s no hope and she’s being sent home to die. She is on sodium chloride drips to flush the calcium and has had an acid drip which allegedly takes 5 days to work. Due to find out today if that has helped. Is there anything that can be done. I don’t want to lose her but don’t want to put her through treatments that won’t be much help. McMillan nurse has said treatment are brutal. When I asked for time estimate she said “we’re talking months without treatment”. I’m uk based. Is there any way to go against drs advice if her strength improves?

My father has started his first chemotherapy for stage III lung adenocarcinoma. I haven’t read the protocol yet, but from what I understand, he will begin with carboplatin and paclitaxel once a week for three weeks, and then they’ll add daily radiation therapy. In December, they’ll assess whether to start immunotherapy, as my father seems to be a good candidate (regarding this, I’m still not sure.. could he be considered a good candidate because the biopsy showed the PD-L1 protein? My father mentioned that the oncologist had referred to an '80%' but I didn't understand what this meant. Are other mutations, like EGFR, detected through the same test? Nothing has been mentioned about this, so I assume that unfortunately, my father doesn’t have this type of mutation). He says he feels very sleepy, though I’m not sure if it’s from the chemo or from possibly benzodiazepines they gave him in the hospital.

What should I expect in the coming days?

Are there any precautions to prevent potential discomfort?

I was thinking of getting a mouthwash to prevent oral ulcers and a thermal inhaler to help with any potential cough and phlegm. I’d also like to consult the integrative medicine unit to consider supplementing traditional treatment with herbal remedies, other molecules, and acupuncture. Does anyone have experience with this?

Thank you all for your help

I need help. I recently started taking Tagrisso and I’m having all the side effects. One that I did not expect is acne. I know this sounds so dumb, because this medication is helping my cancer but I seriously thought last night do you want cancer or acne. I can barely touch my nose. I’m a girl…it awful. I feel like a teen again. It’s honestly incredibly depressing. I just spent $350 on Musley products and I’m hopeful they work. Did anyone go through this? Did it eventually go away? What did you do?

Hello All, I appreciate this community and thank everyone in advance for your patience with me if you read this. My sibling (M56) has the KRAS G12C mutation, but his oncologist says he's not eligible for the Sotorasib treatment or immunotherapy due to being stage 4. About 5 weeks ago, they told him he was stage 1 and that they weren't even sure it was lung cancer (they said maybe it was Valley Fever) but it's steadily increased to first stage 3b, and now stage 4. They tried to do surgery last week to remove the lymph nodes (it has spread to four lymph nodes) and the one nodule in his upper lobe they had identified, but when they went in they found another nodule next to his esophagus so they stopped the surgery and sent him back to the oncologist. The oncologist said he will likely start chemo next week but has ruled out immunotherapy AND Sotorasib based on his staging. When I read journal articles about both treatments, they indicate that they are regularly used for late stage metastatic adenocarcinoma and this sub also has stories of folks who are stage 4 who have used those treatments. Maybe there's something else in his medical profile that is preventing those treatments being used, but they are even recommended on his biomarker results as a possible benefit to his condition. His biomarker results also indicate that he's potentially eligible for the ComboMatch trial using Sotorasib. We did request a written second opinion from UCSF so hoping to hear more after that is completed in a few weeks, but just wondering if anyone in this sub could offer any thoughts, suggestions, personal or family experiences or insight. Maybe I'm just looking for ways to feel better about his situation, but it does seem unusual to me that he's not eligible to do any of the targeted options. Thanks in advance for any insight or feedback, and I appreciate all of you who take the time to support each other here.

My father (81) was diagnosed with stage 4 lung cancer yesterday. We are so confused, and I am hoping that anyone who has experienced this or heard of something like this, could offer advice.

On 8/15/2024, he pulled a muscle in his back and went to his primary doctor. His doctor ordered the necessary tests and even ordered a chest X-ray to make sure everything was covered. All of his X-rays came back perfectly normal, but his blood pressure was a little high so they started him on medication for that.Over the next few weeks, he didn’t feel any relief and went back to the doctor and he prescribed physical therapy. Initially he thought it was helping, but that did not last very long. He was extremely tired and had no strength. On 10/11/2024, he went back to his Dr. and they did another chest X-ray. The report showed a couple of nodules and the radiologist recommended a CT scan. The following Monday, they called and set him up an appointment to get his chest CT on 11/21/2024. On 10/18/2024 he finally went to the hospital where they did a chest X-ray and saw a large spot on his right lung (10.9 cm) and they immediately did a CT scan. The results not only showed distant metastases, but there was a lot of masses in a lot of organs.

Is this kind of growth even possible? I’m so confused!!

He has his first oncologist appt on Monday. Are there any questions I should be asking? Any help with this is greatly appreciated.

I have a family member who was recently diagnosed with Lymphoma due to the PET scan showing cancer only in the lymph nodes. But the biopsy results came back as primary lung cancer. The doctors all appeared to be shocked by this and no one can offer any explanation. Has anyone ever heard of someone having stage 4 metastatic lung cancer with no cancer in the lungs or any symptoms of lung cancer? I would also add that they have found no tumors anywhere just cells in her lymph nodes. Thanks.

(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. 🤍

My dad has been diagnosed with NSCLC and the exon 14 skipping mutation. Treatment will probably be Tepotinib (Tepmetko).

Does anybody have any(one with) experience with Tepotinib?

❤️

Hello all, once again!

I have previosly told you that my mom has progressed on Opdivo/Yervoy - she is now going to receive Taxotere as a systemic treatment. Thank you for your support.

Also, whole brain radiotherapy has been recommended to my mom (never smoker 56F NSCLC stage IV w/ brain mets) by the oncologist.

We are extremely anxious about the side effects, especially because she is 100% functional at the moment and wish to conservate a certain quality of life. We are not avoiding WBRT at all cost - if it is needed, we will have this.

Please, if you have done WBRT for NSCLC brain mets, tell me more about your experience. I want to have realistic expectations about what is ahead of me and us as a family.

Thank you!