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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

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dragonspark | @dragonspark | Oct 13, 2023
In reply to @mrnootz "Hey, 3a is curative using Ablation + Immunotherapy + Surgery at the Mayo Clinic in Rochester..." + (show)
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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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aprilradek | @aprilradek | Oct 13, 2023
In reply to @bpb "Hi April, I wanted to let you know that Stanford has a really excellent Support Group..." + (show)
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Hi April,

I wanted to let you know that Stanford has a really excellent Support Group that meets via Zoom on the first Wednesday of the month from 11 - 12:30. There are others with extensive ALK experience in the group and some who have been living with lung cancer for a long time. You may want to touch base with Lynn Chao, the Social Worker for Thoracic Oncology if you are interested.

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Thanks, I have spoken with the social worker. I am thinking about joining the group-
april

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pb50 | @pb50 | Oct 13, 2023
In reply to @dragonspark "I don’t have an appt with oncology yet. I still have my chest tube in and..." + (show)
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I don’t have an appt with oncology yet. I still have my chest tube in and hopefully get it out tomorrow. I had a fairly large air leak, so they sent me home with the tube for a few days. My surgeon said once that’s out he will drop the orders for a brain MRI and a consult with oncology. So I don’t know yet when I meet with them. I’m hoping soon for both appts.

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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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bpb | @bpb | Oct 13, 2023

Hi April,

I wanted to let you know that Stanford has a really excellent Support Group that meets via Zoom on the first Wednesday of the month from 11 - 12:30. There are others with extensive ALK experience in the group and some who have been living with lung cancer for a long time. You may want to touch base with Lynn Chao, the Social Worker for Thoracic Oncology if you are interested.

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1 reply
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M.R. Nootz | @mrnootz | Oct 13, 2023
In reply to @dragonspark "Hello. I’m new here. I found out I have lung cancer by accident. I’m not sick..." + (show)
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Hello. I’m new here. I found out I have lung cancer by accident. I’m not sick or feeling bad. I had a lobectomy last week and am home recovering from that. I saw in my patient portal that one of the 8 lymph nodes tested positive for cancer. I’m devastated. I surgeon restaged me from Stage 1b to Stage 3a. So I went from “surgery is curative” to something else. I haven’t met with the oncologist yet but I’m worried. I also have an autoimmune disease (Lupus) and I think that will limit my options. This is all so overwhelming and I’m scared now that it’s spread. My PET Scan from a couple of weeks ago didn’t show any lymph nodes being affected and my bronchoscopy didn’t either, which makes me fear it spread in that short time and may be spreading as I type this. Just needed to get that out of me. They did get all of the tumor so at least there is that.

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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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1 reply
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dragonspark | @dragonspark | Oct 12, 2023
In reply to @dragonspark "I don’t have an appt yet. Once I’m cheated from the surgeon he will place the..." + (show)
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I don’t have an appt yet. Once I’m cheated from the surgeon he will place the orders for brain mri and oncology.

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Cleared that is. Not cheated

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pb50 | @pb50 | Oct 12, 2023
In reply to @dragonspark "I don’t have an appt yet. Once I’m cheated from the surgeon he will place the..." + (show)
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I don’t have an appt yet. Once I’m cheated from the surgeon he will place the orders for brain mri and oncology.

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Oh. So you are waiting to be released by surgeon and for him to place order for oncology? Are you still in hospital? (Never mind - I just read you are out of hospital now )

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pb50 | @pb50 | Oct 12, 2023
In reply to @dragonspark "I was still in the hospital when I saw the results. I asked the surgeon when..." + (show)
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I was still in the hospital when I saw the results. I asked the surgeon when he came to my room for rounds. He told me h ex would classify it at stage 3a now. It’s non-small cell Adenocarcinoma.

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Ok. Same type as mine. Well - see your oncologist and he/she will fill in the gaps and lay out your options. The good news is you know and you have docs lined up to guide you through the next steps. Keep the faith!!

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aprilradek | @aprilradek | Oct 12, 2023

Hi Dragonspark,

Glad the tube is coming out soon. The tube freaked me out, I was so glad to have mine removed. Can the surgeon explain what stage you are in and why? I felt so scared until I had a game plan, so like you, I am waiting for the next part of my treatment. But I have an appointment scheduled, hopefully, yours will be scheduled ASAP. Keep me posted.
april

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dragonspark | @dragonspark | Oct 12, 2023
In reply to @lls8000 "Hi @dragonspark, I'm so sorry that you had to come here, but I'm glad that you..." + (show)
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Hi @dragonspark, I'm so sorry that you had to come here, but I'm glad that you did. Please know that everything that you are feeling is normal, it's such a scary time. This is a good/safe place to vent those feelings, because we've all felt them. If you can, try to focus on what you know now, and not the long list of what might be. Your Lupus may impact treatment, but it may not, depending on what's driving the cancer. Like the others, I'm wondering when is your appointment with the oncologist?

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I don’t have an appt yet. Once I’m cheated from the surgeon he will place the orders for brain mri and oncology.

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