Stage 1B Adenocarcenoma NSCLC: Odds of recurrence?

Posted by whahoo @whahoo, May 6, 2023

Hi. Had the right upper lobe removed on 4/11. No lymph node involvement per biopsy. Am seeing a Mayo oncologist on 5/15.

Any idea what the odds of recurrence is without oncology adjuvant therapy?

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

Did they do a Petscan or a CT scan to catch the recurrence. That’s what I’m worried about most. Recurrence that hasn’t been seen.

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@whahoo

How did you find out you were ALK positive? It’s not obvious from looking at the report. Which TKI are you taking? I’m on Medicare so some of the “programs” may not apply to me. Thanks!!!

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@whahoo, I first heard from my oncologist that I was ALK positive. I knew I had blood/liquid biopsy with an outside lab, FoundationOne. I followed up with them directly, and received a copy of the full report.
I take a TKI that is specific to ALK, it’s called alectinib. I’ve had some side effects, but I’m managing well, and I’m thankful for each day.

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@whahoo

Did they do a Petscan or a CT scan to catch the recurrence. That’s what I’m worried about most. Recurrence that hasn’t been seen.

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@whahoo, I hope that as time goes on the fear of recurrence lessens for you. It is certainly an unknown, and your oncologist should be able to give you a better idea of what your future may hold. Knowing what happens if there is a recurrence may help.
I’m stage IV. I have CT scans on a regular basis, and I know that my cancer will recur. It helps me to know that when the cancer comes back we have a plan in place.

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@lls8000

That's great news that they found this at an early stage! We have many other EGFR members here on Connect. Some are very knowledgeable. I have ALK positive cancer, so a similar mutation type driver and I've been on my TKI for 3 years now.
At your appointment next week, be sure to ask about assistance with the cost of the meds. Sometimes the drug manufacturers have programs to help reduce the cost for those without insurance coverage. These high-tech meds are so very expensive.

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I'd also like to share that the pharmaceutical companies have programs to reduce the medication costs even if you have insurance. I qualified for zero cost meds when covered by my employer's health insurance and now while I'm on Medicare (Part D).

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The following might be helpful --or might be much more than you want. The title of the paper is "Update on Adjuvant Treatment in Resectable Non-Small Cell Lung Cancer and Potential Biomarkers Predicting Postoperative Relapse"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9816492/

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@lijda

The following might be helpful --or might be much more than you want. The title of the paper is "Update on Adjuvant Treatment in Resectable Non-Small Cell Lung Cancer and Potential Biomarkers Predicting Postoperative Relapse"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9816492/

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Thank you

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@whahoo

Hi. Yes, biomarkers were tested. My tumor came back EGFR positive. It also came back PDL1 positive, but it’s not advanced enough to treat it for that.

The EGFR “treatment” is a tyrosine kinase inhibitor. It’s not chemo or immune therapy apparently. The inhibitor that was mentioned is not covered on my Medicare Part D (prescription plan). And its cost prohibitive. Not sure what my other options might be.

I did have symptoms. Pain in my upper right shoulder behind the shoulder blade. Had a raspy voice. The spot was noticed in a routine X-ray in January. Then CT scan, PET/CT scan, then biopsy confirmed it.

I have an appointment with a Mayo oncologist in May 15.

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It sounds unnerving, but I wish you the best on your journey. Thanks for sharing. I have a followup for nodules/ground glass over the winter. Have been in the "watchful" mode.

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@whahoo, how are you doing? What did you learn at your recent oncology appointment? Any decisions about treatment choices?

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@colleenyoung

@whahoo, how are you doing? What did you learn at your recent oncology appointment? Any decisions about treatment choices?

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Oncology appointment went well. I have EGFR exon 21 mutation which is appropriate for Tagrisso TKI medication. However, it’s cost prohibitive (Medicare Part D). So we will process paperwork with AstraZenecs for assistance. If assistance is denied, then no treatment (no chemo, no immune therapy). We’ll just watch it. Also discovered that this mutation likes to travel to the brain. Will consider a MRI. Not comfy being stuffed in a tube. Thanks for asking.

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@whahoo

Oncology appointment went well. I have EGFR exon 21 mutation which is appropriate for Tagrisso TKI medication. However, it’s cost prohibitive (Medicare Part D). So we will process paperwork with AstraZenecs for assistance. If assistance is denied, then no treatment (no chemo, no immune therapy). We’ll just watch it. Also discovered that this mutation likes to travel to the brain. Will consider a MRI. Not comfy being stuffed in a tube. Thanks for asking.

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I was diagnosed with EGFR exon 19 in 2018. According to my research chemist friends, the Exon number identifies the particular protein molecule that has mutated. We truly live in amazing times! After my lung cancer metastasized to my brain, Tagrisso was prescribed for me in late 2020.

I'm still working and in an AstraZeneca program where our household demonstrates we pay at least 10% of our net income on medical expenses. Pretty much every medical-related expense counts, even dental work. Even if this particular program is not an option for you, there are others. Definitely talk to your Oncologist about paying for Tagrisso. Almost no one can afford this medication, or any of the other new, targeted medications, without some sort of assistance.

And I get a brain MRI every 3 months since the surgery. I think I'm up to 11 or so by now. When I first went in, I felt a bit claustrophobic. I find that closing my eyes makes it OK. It's always the same "song", so I almost fall asleep by now. The good part is no radiation! It's just magnets.

Best of luck with your therapy. It helps me to look at all this as another adventure!

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