New here: Looking for others who have NSCLC and information

I’m getting treated at Mayo in Jacksonville ,Fl. I met with oncology next week. Just got that appointment today. Still have my chest tube in so I can’t get my brain MRI yet. I have a ground glass opacity on my right side that is not cancer but they told me trust they want to go ahead and treat it with SBRT. Is that the same as ablation?

@dragonspark, SBRT is a type of radiation. You will want to ask your oncologist about the details and be sure get information on the potential side effects of the SBRT. The technology continues to amaze me and is ever evolving. Thankfully!
Here is some information from Mayo: https://www.mayoclinic.org/tests-procedures/sbrt/pyc-20446794
And here are some links to past discussions which may be helpful:
https://connect.mayoclinic.org/discussion/sbrt/
https://connect.mayoclinic.org/comment/926427/

No MRI until the tube is out. But I do have an oncology appointment.

Ablation is a radio wave transmitter on the end of a sharp stick shoved into a tumor and then cooking it until it dies. I think it needs to be a solid tumor for it to work.

Hi Lisa,

One of the lymph nodes removed had cancer at the "edge of the margin". The team is recommending radiation treatment in that area. I am waiting for an appointment with the radiation oncology team to get more details. I hate the waiting part- are you still feeling well on Alecensa?

I was hoping to go straight to Alectinib (Alecensa), but the team recommends radiation first.

april

Hi Merry,

It seems like I might need radiation therapy- I wasn't expecting that as I am ALK-positive and was hoping to go straight to the targeted pill therapy. I might be repeating myself, but I have a hard time on this site finding my previous messages.
I have an appointment with a radiation oncologist Oct 31st-
I have cancer on one of the lymph nodes removed during my lobectomy-
april

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

This may sound weird but Khan Academy has a decent explanation of lung cancer.
https://www.khanacademy.org/science/health-and-medicine/respiratory-system-diseases/lung-cancer/v/what-is-lung-cancer

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.