New here: Looking for others who have NSCLC and information

No need for chemo. I was very lucky that my cancer was found accidentally with a CT scan for my heart. However the doctor thought we should wait 3 months and repeat the test. I thought no way. Another doc ordered a PET scan and it confirmed need to see surgeon. He found not just the one nodule that lit up but a second one also. I will have CT scans twice a year. I’m sore and still short of breath. Difficult in Florida to do much walking. I do get a little discouraged when I look at things that need to be done around the house, wishing I could do more. I know I need to be patient but that is difficult at times.
For now I am so grateful my cancer was found so early. I always recommend to friends that they need to be their own best advocate and to research everything. Don’t always take the Doctors word until you do some research. Thank you for listening.

@harley123
Hi Tom, I’m Juliette. I was diagnosed with stage III non small lung cancer December 2019 at 45 when an abdominal x-ray for a GI referral showed a tumor in my right lung. I was in complete shock. Some of the comments already given I will echo. Getting a second opinion is reassuring in feeling confident in your treatment plan. I got a second opinion at Mayo and followed through with all my treatments there. When two oncologist tell you the same thing it is very reassuring. I just told the first doctor I trusted him and liked him very much but wanted a second opinion for the reassurance. A good oncologist will not be offended by that and will happily do the referral for you if that is what you choose. I would also echo Tom’s comments on genetic testing. I was anxious to start treatment once I knew there was this enemy inside me but the genetic testing is vital in a treatment plan. I found out I have the EGFR Exon 19 mutation in my tumor. A friend sent me a book by Greg Anderson, Cancer 50 Things To Do when I was diagnosed. The author is a stage IV lung cancer survivor and the book has a very positive message and advice. I read it twice during the first few weeks after my diagnosis waiting for genetic tests to come back and start treatment. My husband found lung cancer survivor stories to share with me as well. Remember the statics for lung cancer are behind. Some of the new treatments have not been around for 5 years so statics do not reflect those advancements.
Please take care and wish you luck on your treatments.

Hi April (@aprilradek), Good to hear from you. I'm doing very well, thanks for asking. My next scans are two weeks away. I did go straight to the targeted therapy (over three years ago), and for me, it cleared several tumors in my lung and liver (no surgery and no chemo or radiation). My treatment approach is generally reserved for advanced stage patients. Your team must have a good reason for recommending the radiation first, possibly a curative approach. What reason did they give? Did they say that you would be put on Alectinib after radiation, or are they hoping that won't be needed?

@dragonspark, Just checking in with you, hoping that the chest tube is out, and you have some additional information about your next steps. The waiting is difficult for all of us.
If you are ready to share, have you seen the oncologist? Do you know if any biomarker testing was completed on the tissue or lymph nodes that they removed.

Do you have your chest tube out yet? Wondering when you can have your mri

Hi,

I am assuming you are talking to me?

I had my chest tube removed while I was in the hospital.
I just had a follow-up with my surgeon and he said everything looks good- I had an MRI pre-chemo. My brain looked fine.
My treatment has been chemo, surgery, next radiation-
Have you heard anything from your oncologist?
april

Your message is so inspiring, my husband has been diagnosed with stage IV and has the Egfr mutation. Just started taking tagrisson pills as a targeted therapy and nothing else at the moment. Anyone at the same treatment? Do you recommend a specific oncologist at Mayo to send him his report so far and get a second opinion?

@elechar2023 I usually see Dr. Leventacos at Mayo and my husband and I absolutely love him. You can’t go wrong with Mayo, they put the patient first. I have a good friend who was diagnosed with stage IV kidney cancer in 2018 and travels to Mayo for all his care as well.
Wish you well!

I was KRAS G12D. But from a treatment perspective, my PD-L1 expression was an almost unheard of 100% which meant I went immediately into immunotherapy and was NED within six months..

Hi Tom @ta52, I thought I’d check to see how you are doing?