EFRG variant stage 1A lung cancer: What treatment did you have?

I'm grateful to read that they caught this so early. Surgery is usually only done with curative intent. At stage 1A, standard of care is to observe for two years.

If you want to consider a systemic treatment, then consider a clinical trial. Get a second opinion at a university with a med school and a hospital. They will be able to tell you if you qualify for a clinical trial.

Do you know which EGFR mutation you have? Exon18, 19, 20 or other?

My mother had Exon 18 so she took tagrisso and it works well. Some mutation has better response to tagrisso. My friends mother has that type of mutation and tagrisso is highly effected on her.

My key point is that I have Stage 1A. I am only asking about the EFGR variant for that stage. I know there are effective treatments for higher stages. I want to know if anyone received treatment for the variant when they were 1A.

Thank you, but is the standard of care STILL to observe for 2 years when the variant is present? I have Exon 20.

I may be wrong considering the EXON 20. You might run this past people with more knowledge about EGFR at the EGFR Resisters on Facebook.

@jill7517 ,

A physician friend recommended that I have
a circulating tumor cell blood test (CTC) through RGCC International before my LLL wedge resection for Stage 1A adenocarcinoma this year. My value was high at 2.4 indicating I had cancer cells shedding from a tumor into my blood before surgery. I repeated the test six weeks after my successful surgery and my value was still high at 2.1. The desired value is less than 1.4 according to RGCC. There are strict pre lab blood draw guidelines you must follow before taking the test. Certain medications and supplements interfere with test results.

RGCC does offer additional testing called Onconomics Plus for treatment options targeting your specific tumor biomarkers and online consultations. Oconomics Plus is expensive at $2600. The Oncotrace CTC test is around $1000. Neither are covered by insurance. The RGCC website lists providers that offer the tests. I had my test drawn at my local Functional Medicine doctor’s office.

My actual tumor was not ordered to be tested for biomarkers. I am trying to see if that can be done and I am following a keto diet and taking a few supplements in the meantime.

@jill7517, Unfortunately, the research doesn't always keep up with our needs. I'm not an expert, I'm a patient with the ALK mutation. I'm waiting for research and studies to stay ahead of what I need to stay alive. It's not an easy position to be in; always watching and waiting for positive results, only to usually be disappointed as studies fail. But there are some bright lights and advances, and I hang my hopes on those studies and researchers.
For EGFR, the ADAURA study included some reference to 1B patients, but not 1A (https://www.nejm.org/doi/full/10.1056/NEJMoa2304594 ).
Even with a progressive oncologist, it can be difficult to get these drugs prescribed off-label, largely due to the high cost. (In the US), Sadly, it can be difficult to get insurance companies to cover the cost, and the drugs can often cost many tens of thousand dollars each month.
Have you thought of seeking a second opinion, possibly from an EGFR expert? They may be able to add reassurance or other thoughts.

@jill757, Lisa mentioned most of the things I was going to say. I'm always in favor of getting a second opinion, and I did so myself both times my EGFR mutation showed up. Before my lobectomy in 2018, my oncologist thought my tumor was Stage IIa and he planned to do a lobectomy and then watch. In my case, we found a lymph node had been infected, so I did have chemo after all. But the plan for Stage IIa back then was the resection and watch. Lung cancer treatments are rapidly evolving as funding for lung cancer research is starting to catch up with the less deadly cancers.

As to smoking, the EGFR mutation is most common in nonsmokers. It can happen, but it's unlikely.

Thank you, I have indeed arranged for a 2nd opinion.