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How have you made treatment decisions?

Do you work with your healthcare team to make decisions about lung cancer treatment? How have you decided on treatments? Any tips?

  1. Yes, I have a wonderful medical care team, took me years to put together, and we make decisions together. I learn about different treatments and advancements from various lung cancer newsletters and summits (in person pre-covid and now virtually) and bring information on treatments that I think might be a fit for me down the line if needed. I feel comforted knowing I have a Plan B, C, D, etc. I get scanned every six months and hope to never need to pull out my "in case of" file, but good to know I have one!

    1. Alisa, you are a truly educated patient and your medical team is up to date. I hope all of the patients and their medical teams can be like yours, but... That's why I think for us, to be educated patients are ulmost important because the doctors, if not specialized in lung cancer, can not keep up with the pace. We have to be educated including getting in touch with researchers/doctors on our specific lung cancer from outside.

      1. Absolutely! When I was diagnosed we had to rely on going to medical libaries, it is so much easier to be one's own advocate now. The world opened up with the World Wibe Web!

    2. , how long have you lived with this and what stage did they find it?

      1. Hi Bruce, I was diagnosed 21 years ago, Stage 3b, nsclc adenocarcinoma. I had a lobectomy and chemo treatments. That cancer never came back. Thankfully I continued with screening as a small nodule was found this year in my lower left lobe and because it was caught so small, I was able to have a wedge resection and it is considered Stage 0/1 due to small size and the fact that all margins in the lobe were clear. This is a completely differently primary than the one 21 years ago. I am now recuperating, that's why it took so long to reply to you. I will continue to get scanned as I have nodules being watched. So short story is I am a 21 year survivor of 2 primaries, Stage 3b and Stage 0/1. Thanks to all the advances! Please feel free to reach out anytime. Warmly, Alisa, Team

    3. My former oncologist,whom I dearly loved, left oncology to go into research. I thought at first I was not going to get another doctor that was so knowledgeable and listens to what I have to say, but fortunately for me I was wrong. I am now in the very capable hands of a young doctor who specializes in the lungs, something my former doctor didn't, I feel very good about things again.

      1. @Cheryn, all my original doctors retired, I found another oncologist I liked and he just left for private practice! It took me a while, but I just put together another medical team that I'm very happy with. I'm glad you found an oncologist you are happy with and specializes in lung cancer. Wishing you all the best, Alisa, Team

      2. That is awesome!

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