New here: Looking for others who have NSCLC and information

Posted by harley123 @harley123, Apr 24, 2022

Hi my name is Tom and I was just diagnosed with NSCLC thay found a large tumor in My right lung besides the shortness of breath and pain in my right shoulder I would never known anything serious was wrong when I went to the doctor about my shoulder that's when thay found the tumor I had all the test PET, MRI, Cat scan, ets. The plan is Immunotherapy but thay needed DNA so in the meantime thay are going to put me on Chemo. If anyone could let me know what to expect iam at a loss and don't know anything about the disease and anything would be a help.
Thank You
Tom

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

@mrnootz

Hey, 3a is curative using Ablation + Immunotherapy + Surgery at the Mayo Clinic in Rochester MN. I have been Cancer Free for 3 weeks now. My stage 3a is now stage 0...

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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?

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@dragonspark

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?

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@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/

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@pb50

How I wish they had sent me
home with my chest tube. Instead, they said “right on time” when they removed it - and sent me home 🙄 It was horrendous until home health came 3 days later.

So you can expect rhe MRI and an oncology huddle this week
- I think just having facts and a direction helps stress levels.

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

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@dragonspark

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?

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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.

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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

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@merpreb

Hello @aprilradek- It's nice to meet you. Welcome to wondering how long you have to wait to do things after a lobectomy. Honestly, we should all start a club!

What does your doctor have to say concerning this or haven't you had a follow-up? How are you feeling?

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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

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@aprilradek

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

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

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@aprilradek

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

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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?

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@dragonspark

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

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@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.

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