Stage 4 likely - what are the treatment options if surgery is not one?

Posted by strongone21 @strongone21, Jul 7 5:26pm

Recently diagnosed from a PET scan that a large nodule, lymph node and some metastatic presence affecting tissues around spine and ribs. No symptoms at all other than a mild diaphragm area pain. With the metastatic nature I am worried about treatment options if removing nodule/lymph node will not help. Any experience from a stage 4 lung cancer in terms of survival rates? Please share any relevant experience that might help me. Thank you

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Profile picture for Matthew K @flusshund

@warrego, saying that ChatGPT is far better than Google may be justified if the person has any skill at constructing a suitable prompt. For example, one that includes "provide authoritative sources". But, in general, all AIs base their information on what they've scraped off the Internet. With the rapid proliferation of pseudo-science and outright lies, any AI can easily provide inaccurate results.
And, if the Internet can provide better information than your Oncologist with their 10 years of training and years of experience, get another Oncologist! Although I still have to wonder how you define "better."

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Define better? Ask exactly the same question of both Google and CHATGPT and get better answers from CHAT. Not just once, but innumerable times. I do know how to use Google effectively.

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Update - Biopsy confirmed malignancy and stage 4. Awaiting brain MRI and biomarkers test next for oncologist to decide on next steps. It does not look like surgery is an option are there are 4 different spots in the lung. So do they start with chemo first? Anyone go through a similar situation with chemo first and what was your experience like? Anything you would suggest for my family to get through the next few months?

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Hi @strongone21 - that is tough news. As hard as it is to wait, I think the doctors need all of the information before they can chart the best path forward. Do they know if all of your nodules are the same cancer? I am in the *not eligible for surgery* boat, too. I have nodules in all 5 of my lobes. And so they're treating me with medication. But you might need a combination of of chemo/or targeted therapy and radiation. For now, it's great that you feel otherwise healthy. You can focus on eating well, getting enough sleep and some exercise to help your body stay strong for whatever treatment comes next. If you're interested in getting a second opinion, I recommend to do that in parallel - as soon as you have all of the diagnostics completed.

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Profile picture for mamajite @mamajite

Hi @strongone21 - that is tough news. As hard as it is to wait, I think the doctors need all of the information before they can chart the best path forward. Do they know if all of your nodules are the same cancer? I am in the *not eligible for surgery* boat, too. I have nodules in all 5 of my lobes. And so they're treating me with medication. But you might need a combination of of chemo/or targeted therapy and radiation. For now, it's great that you feel otherwise healthy. You can focus on eating well, getting enough sleep and some exercise to help your body stay strong for whatever treatment comes next. If you're interested in getting a second opinion, I recommend to do that in parallel - as soon as you have all of the diagnostics completed.

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Yes @mamajite, they only biopsied the one farthest from the nodule that likely started it. So at this point, they are not able to do more biopsies due to access. And yes I am also scheduling a second opinion. Hope the chemo and radiation are working well for you.

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Profile picture for strongone21 @strongone21

Yes @mamajite, they only biopsied the one farthest from the nodule that likely started it. So at this point, they are not able to do more biopsies due to access. And yes I am also scheduling a second opinion. Hope the chemo and radiation are working well for you.

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Thank you - I'm coming up on 2 years since diagnosis. 🙌🏻 Let us know what the doctors recommend. Be good to yourself between now and then. The uncertainty is difficult, but hopefully you will know more very soon.

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Profile picture for strongone21 @strongone21

Update - Biopsy confirmed malignancy and stage 4. Awaiting brain MRI and biomarkers test next for oncologist to decide on next steps. It does not look like surgery is an option are there are 4 different spots in the lung. So do they start with chemo first? Anyone go through a similar situation with chemo first and what was your experience like? Anything you would suggest for my family to get through the next few months?

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@strongone21 , I certainly wish you would have received better news from the biopsy. The uncertainty that comes along with this type of diagnosis can be one of the hardest parts. Knowledge will be important, and that starts with knowing specifically what is driving the cancer. The biomarker test results are important. If you have one of the gene mutations that you mentioned in an earlier post, that can change and drive treatment decisions.
There are many of us that are stage IV that have not had to endure traditional chemotherapy. Five years ago, when my ALK cancer was diagnosed, I went directly to a targeted therapy. I'm still taking that same treatment today (thankfully!).
Acceptance of the diagnosis takes time, for you and your family. It won't be easy, but stick with each other, lean on each other, and try to foster a safe space for sharing. Everyone is different, and at different times throughout the process you may need different things too. Some days, you may want to talk about it, other days you may want to do whatever you can to get your mind on something else.
I got tired of people telling me that everything would be ok, because they had no idea what I was up against. It helped when I realized that they had to say that for themselves, not for me. Give the people that are closest to you some grace, they are scared, and they don't know exactly how to help. Don't be afraid to tell them what you need too.
Have your additional appointments been scheduled?

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Profile picture for Lisa, Volunteer Mentor @lls8000

@strongone21 , I certainly wish you would have received better news from the biopsy. The uncertainty that comes along with this type of diagnosis can be one of the hardest parts. Knowledge will be important, and that starts with knowing specifically what is driving the cancer. The biomarker test results are important. If you have one of the gene mutations that you mentioned in an earlier post, that can change and drive treatment decisions.
There are many of us that are stage IV that have not had to endure traditional chemotherapy. Five years ago, when my ALK cancer was diagnosed, I went directly to a targeted therapy. I'm still taking that same treatment today (thankfully!).
Acceptance of the diagnosis takes time, for you and your family. It won't be easy, but stick with each other, lean on each other, and try to foster a safe space for sharing. Everyone is different, and at different times throughout the process you may need different things too. Some days, you may want to talk about it, other days you may want to do whatever you can to get your mind on something else.
I got tired of people telling me that everything would be ok, because they had no idea what I was up against. It helped when I realized that they had to say that for themselves, not for me. Give the people that are closest to you some grace, they are scared, and they don't know exactly how to help. Don't be afraid to tell them what you need too.
Have your additional appointments been scheduled?

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@lls8000 Glad to hear your treatment for ALK is working well. My oncology appt should be done this week and I am hoping to have some plans ahead soon.

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I was diagnosed with stagr IV adenocarcinoma carcinoma of the lungs. Surgery was not an option. I have been receiving immunotherapy of yervoy and opdiva since Feb. 2023. Discontinued the yervoy in July 2024 due to unexplained side effects. Oncologist explained that the treatment was paliative, not curative. As of 5/30 this year after robotic etc biopsies, they found cancer only in one lymph node. The immunotherapy has been tolerable. Oncologist also said he has a 94 year old patient who has been on sa.e treatment for 10 years and is doing well. Still waiting to hear what's next.

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Profile picture for kakalena @kakalena

I was diagnosed with stagr IV adenocarcinoma carcinoma of the lungs. Surgery was not an option. I have been receiving immunotherapy of yervoy and opdiva since Feb. 2023. Discontinued the yervoy in July 2024 due to unexplained side effects. Oncologist explained that the treatment was paliative, not curative. As of 5/30 this year after robotic etc biopsies, they found cancer only in one lymph node. The immunotherapy has been tolerable. Oncologist also said he has a 94 year old patient who has been on sa.e treatment for 10 years and is doing well. Still waiting to hear what's next.

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@kakalena thanks for sharing your experience with Stage 4. Did you need chemo as well or did you go straight to immunotherapy? Does the drug Opdiva help you with treating the lymph node or is there more needed now?

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Profile picture for strongone21 @strongone21

@kakalena thanks for sharing your experience with Stage 4. Did you need chemo as well or did you go straight to immunotherapy? Does the drug Opdiva help you with treating the lymph node or is there more needed now?

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Waiting to hear on continuation of Opdiva. I started with 2 treatments of carboplatin and paraplegic chemo drugs along with the immuno drugs to knock the cancer down. Also, I have been receiving abraxane and gemcitabine since Feb. 2025. I was diagnosed with pancreatic cancer in January not a metastases of the lung cancer. Oncologist said that the silver lining was that it works on lung cancer too. It's very rough. Not sure what , if anything, it did to lung stuff.

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