Anyone being treated for fibrosis after proton radiation treatment?

@andycapp choosing when to stop is a victory over the cancer. You decided not the cancer and I hope when it's time for me to make that decision I am able to do it with the grace and live that you have. I pray that your landing is gentle.

@andycapp, I know many of us will come to this fork in the road. I'm sure it wasn't an easy decision. Are your family/friends supportive of your decision?
I'm wishing you peace and comfort in your decision.

All, it really wasn’t much of a decision. The “chemo light” that was offered would have possibly bought me A little more time but wasn’t going to be a cure. I choose to be chemo side effect free.
Thanks for everyone’s support!

I don't know if anyone here can answer my questions; but here we go.
What are the final stages of lung cancer? I will see my oncologist next week and will ask her this question as well. I guess that everyone is different. I have cancer nodules in both lungs and a mass in my left lung that we treated, I have emphysema and fibosis in both lungs as a result of 40 pack years of smoking. I'm dealing with a lot of coughing and shortness of breath with mild to moderate exercise (walking).

@andycapp my dad also had lung cancer many years ago. for him, I remember over the course of several months he ate less and spent more time in bed. eventually he was hospitalized one last time. I think maybe it was for a combination of dehydration and pain control. I hope your team can help improve the coughing and shortness of breath for you.

Thanks for your reply, mamajite. I’ll ask my oncologist, when I see her next week, how much time I have left.
This is unchartered territory for me!

@andycapp you are most welcome. it's good that you can have a candid talk with your oncologist. just bear in mind that they aren't always right. mine gave me 2 years - 3 years ago. I like what @lls8000 always says - that we don't have expiration dates. ❤️🙏🏻

Hi @andycapp
I think it may be different for everyone too. I hoping your oncologist can answer the questions you have on your mind,
Meanwhile positive thoughts sent your way, as well that she will be able to help with your cough/shortness of breath during your walks.
Hugs 🤗 Daisy

I am sorry for your situation. I just saw your question. I have bilateral multifocal lung cancer and since Dec 2021 have had 2 VAT wedge resections and two radiation treatments. I experienced pneumonitis after my photon SBRT radiation some 3 years ago. Pneumonitis scars the lungs, so I am now diagnosed with pulmonary fibrosis and am on permanent oxygen for exertion and sleep. I had proton beam radiation in December 2025 and 20 weeks later developed significant chest pain which is now much better. It remains to be seen if it impacted my lung reserve. I understand your choice. Because of the fibrosis and reduced lung reserve, my treatment choices are limited. I am still independent and would not risk losing that. Quality of life is important. And if you are able to exercise and walk everyday, that is a positive fact. Warmest wishes

@vic83 Thanks Vic! Sounds like we are on similar paths!
Are you taking any anti-fibrotic meds?
I’m dealing with intermittent dry coughing episodes and shortness of breath when exerting myself (moderate walking). Have you been prescribed anything to help?
Do you see a pulmonologist? Does he/she offer any support other than 02? I am using O2 when walking but don’t need it for sitting or lying.
Thanks for your suggestions/support!