I have stage 4 lung cancer: Anyone considered no treatment?

Posted by vwbug @vwbug, Apr 16 8:22pm

I have diagnosed with stage 4 lung cancer. I am considering not doing any treatments. Has anyone out there considered this option?

Interested in more discussions like this? Go to the Lung Cancer Support Group.

Profile picture for mimicmckay @mimicmckay

These are encouraging responses. I’m a super healthy and active 58 year old recently diagnosed with stage IV lung cancer on New Year’s. I just found out I have another new primary cancer of the esophagus (GIST tumor). I agree with folks saying our outlook and positivity are critical. I’m a newbie and looking forward to encouraging engagement from this group.

If I may ask what other lung cancer support groups for have you found helpful? I’m finally over the shock of the diagnosis and think I’m ready for a support group. I know my husband is.

Thank you all 💕

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Hi @mimicmckay , Unfortunately, many people are diagnosed with more than one type of cancer. I'm sorry that you've joined that group. It sounds like you have allowed yourself to grieve and emotionally process the weight of the diagnosis. It's a big one!
Keeping hope in your outlook can help a lot! Many people live active lives with stage IV lung cancer. The outlook has changed considerably in the past ten years, and even during my 5 years I'm seeing new therapies developed. It's encouraging, and I'm so very grateful to the scientists doing this work.
Is your lung cancer EGFR driven? I saw you mentioned Tagrisso in a different post. Have you found the EGFR Resistors Group on FaceBook? https://egfrcancer.org/
Go2 for Lung Cancer has a resource page for support groups: https://lungcancerregistry.org/resources/finding-support/
Also, check with your cancer center for in-person groups in your area. They may have access to caregiver groups for your husband too. I found a group of other long-haul stage IV patients that has been helpful for me.

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Profile picture for Lisa, Volunteer Mentor @lls8000

Hi @mimicmckay , Unfortunately, many people are diagnosed with more than one type of cancer. I'm sorry that you've joined that group. It sounds like you have allowed yourself to grieve and emotionally process the weight of the diagnosis. It's a big one!
Keeping hope in your outlook can help a lot! Many people live active lives with stage IV lung cancer. The outlook has changed considerably in the past ten years, and even during my 5 years I'm seeing new therapies developed. It's encouraging, and I'm so very grateful to the scientists doing this work.
Is your lung cancer EGFR driven? I saw you mentioned Tagrisso in a different post. Have you found the EGFR Resistors Group on FaceBook? https://egfrcancer.org/
Go2 for Lung Cancer has a resource page for support groups: https://lungcancerregistry.org/resources/finding-support/
Also, check with your cancer center for in-person groups in your area. They may have access to caregiver groups for your husband too. I found a group of other long-haul stage IV patients that has been helpful for me.

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Thank you to much. I will take a look at these.

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I just got my diagnosis about 5 days ago. I'm afraid they're trying to sweep me off into medically managed situations.

I too, a trying to decide if I even want to do chemo and or radiation. The one question that I asked twice and they wouldn't answer was "What would happen if I didn't do anything?" I'm trying to educate myself so I don't end up with something I've never wanted. Sounds like my gal in oncology is wanting to set me up with appointments!

I'll be watching this discussion with interest.

Thanks to all of you guys!
Sandy

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I’m scheduled to start chemotherapy (carboplatin and pemetrexed) plus amivantamab (also an infusion) next week and I’m still questioning my decision. My cancer is EGFR-positive with the exon 21 L858R mutation, second line treatment after MET amplification resistance on Tagrisso.

Like you, I didn’t hear about the other path: no treatment. However, my research did try to answer the following questions:

• What might I gain in progression-free survival (PFS)? (My treatment improved median time to PFS by only 3 months.)
• What might I gain in overall survival (OS)? (My treatment had no statistical difference in OS.)
• What follows the planned treatment? Just monitoring or a continuing maintenance treatment? (If my treatment shows improvement, I continue pemetrexed and amivantamab every 3 weeks until the disease does progress or I can’t tolerate further treatment. If my treatment does not show improvement, they add another drug, a targeted therapy (lazertinib) in pill form. Yikes.)
• Can any tests be done before the planned end of treatment to determine if the treatment is working or not? (My oncologist agreed to do a CT scan halfway through treatment.)
• What is the treatment expected to do? (My treatment plan will target both the MET resistance mechanism and the EGFR mutation, which is pretty impressive.)

There is no formula for making a decision but answers to these questions might help you understand what your gut is telling you because, above all, you will go with your gut.

My answers to the first three questions certainly wasn’t encouraging. So why am I starting? I still don’t know. Sometimes I think it’s because I like and admire and trust my oncologists. I tend to believe in disciplined science and I don’t think my cancer will miraculously disappear, even with alternative treatments (but I will continue taking Coriolanus and Pectasol). And I can yell ‘stop’ if my life becomes unsatisfying under treatment.
Good luck with your decision.

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Profile picture for vwbug @vwbug

Has anyone are no anyone who has made the decision not to take treatment?

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My father in law will be 82 in a few months. He was diagnosed a year ago with stage 4 lung cancer that’s spread to his lymph nodes and bone. He has chosen not to do treatment as he wants quailty of life instead of quantity of life

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Profile picture for southernmomma @southernmomma

My father in law will be 82 in a few months. He was diagnosed a year ago with stage 4 lung cancer that’s spread to his lymph nodes and bone. He has chosen not to do treatment as he wants quailty of life instead of quantity of life

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Welcome @southernmomma, I'm sorry to hear that your family is facing lung cancer. It's difficult to face at any age. I find it commendable that he was able to make this decision for what his remaining time will look like. Of course, it can be difficult for the family involved to accept the decision. Has he had the emotional and medical support that he needs to give him that quality of life that he was looking for?

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Profile picture for southernmomma @southernmomma

My father in law will be 82 in a few months. He was diagnosed a year ago with stage 4 lung cancer that’s spread to his lymph nodes and bone. He has chosen not to do treatment as he wants quailty of life instead of quantity of life

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@southernmomma, I'm sure that is a tough position for you and your family to be in. For what it's worth, a survey of people in their upper 70s and above that was conducted by members of the International Association for the Study of Lung Cancer found that most people in that age range preferred maintaing their quality of life over an attitude of 'kill the cancer no matter what.'

Has your father-in-law considered the middle path? He should let his Oncologist knows that he prefers quality of life and see if there is a treatment that can make him more comfortable and/or somewhat extend what time he has remaining. It's not an either/or choice anymore.

I wish you, your father-in-law, and the rest of your family much eeeeease in these challenging times.

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Hi. I’m just wondering what your thoughts are against any treatment? I’ve had prostate cancer for 16 years. Had it removed, then radiation and ADT injections. It’s now stage four to my lymph nodes. It’s scary and now I probably have lung cancer. I watched my dad and uncle die from prostate cancer that spread everywhere. Yes, there are side effects but for me they’re very manageable. With no treatment at all it will most likely spread effecting different organs. It was a slow and agonizing, painful end for my dad. I, myself, would always pick treatments. Good luck whatever you decide.

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