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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?

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whahoo | @whahoo | May 19, 2023
In reply to @flusshund "I was diagnosed with EGFR exon 19 in 2018. According to my research chemist friends, the..." + (show)
@flusshund

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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Thanks for the response. Very helpful. My oncologist has applied for assistance through AstraZeneca. If they go based on my adjusted gross income for 2022. I won’t qualify.

But … I have extenuating circumstances. My job is ending on June 30. And I’m going on social security, which will drastically reduce my income to well below the single household threshold that AstraZeneca has established. I’m trying to be optimistic.

I’d really like to know what causes this flavor of lung cancer that is not associated with smoking.

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whahoo | @whahoo | May 19, 2023
In reply to @whahoo "Did they do a Petscan or a CT scan to catch the recurrence. That’s what I’m..." + (show)
@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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I had a Petscan with syed glucose which showed the lung cancer but nothing else. Petscan will catch earlier than CT scan. If you haven’t had a Petscan with the dyed glucose, you should ask for one as a baseline, assuming your insurance will approve and pay. It’s quite an expensive procedure.

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Matthew K | @flusshund | May 19, 2023
In reply to @whahoo "Thanks for the response. Very helpful. My oncologist has applied for assistance through AstraZeneca. If they..." + (show)
@whahoo

Thanks for the response. Very helpful. My oncologist has applied for assistance through AstraZeneca. If they go based on my adjusted gross income for 2022. I won’t qualify.

But … I have extenuating circumstances. My job is ending on June 30. And I’m going on social security, which will drastically reduce my income to well below the single household threshold that AstraZeneca has established. I’m trying to be optimistic.

I’d really like to know what causes this flavor of lung cancer that is not associated with smoking.

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From what my Oncologist says, no one knows exactly what causes this mutation. My research chemistry friend says these mutations are caused by a typo in the DNA. This one generally occurs during a person's lifetime and is rarely inherited from one's parents. I think of it as bad luck! In my case, I believe it first developed in my mid-30s. Something changed then that made me allergic to cinnamon and certain brands of soap and caused chronic circulation problems in my lower legs. That last one is according to a Hematologist. I don't know for sure the circulation problem led to this mutation, but within the medical community, I've known people who believe that people who develop this particular type of lower leg circulation problem are more susceptible to developing lung cancer later. That's total speculation, though. I was diagnosed with multiple blood clots and bilateral (both lungs) pulmonary embolisms in 2016 and cancer in 2018. I'm participating in a genomic study being run by my Cancer Center in the hopes of better understanding this mutation in the future.

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whahoo | @whahoo | May 19, 2023
In reply to @flusshund "From what my Oncologist says, no one knows exactly what causes this mutation. My research chemistry..." + (show)
@flusshund

From what my Oncologist says, no one knows exactly what causes this mutation. My research chemistry friend says these mutations are caused by a typo in the DNA. This one generally occurs during a person's lifetime and is rarely inherited from one's parents. I think of it as bad luck! In my case, I believe it first developed in my mid-30s. Something changed then that made me allergic to cinnamon and certain brands of soap and caused chronic circulation problems in my lower legs. That last one is according to a Hematologist. I don't know for sure the circulation problem led to this mutation, but within the medical community, I've known people who believe that people who develop this particular type of lower leg circulation problem are more susceptible to developing lung cancer later. That's total speculation, though. I was diagnosed with multiple blood clots and bilateral (both lungs) pulmonary embolisms in 2016 and cancer in 2018. I'm participating in a genomic study being run by my Cancer Center in the hopes of better understanding this mutation in the future.

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Is it slow growing? I have an autoimmune disease called Dermatomyositis which is associated with cancer. Was diagnosed in 2013. Cancer usually occurs within 2 years of the diagnosis. It had been well controlled until about a year ago, then I went into a flare-up. A somewhat routine x-ray in January 2023 found the nodule. Surgery to remove right upper lobe on 4/11. I’m Stage 1B.

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vic83 | @vic83 | May 25, 2023

I had Stage 1B mass RUL removed in Dec 2021. I have multifocal with other independent nodules developing. I did have regrowth in suture line that is now being watched.
I also just had surgery for LUL, another stage 1. However, this time there is a new factor. The Pathology reports "Spread through Air Spaces: Present." That means tumor cells spreading within the lung parenchyma beyond the edge of the main tumor. This is a recent factor in prognosis so not a lot of information.

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harrynsc | @harrynsc | May 26, 2023

I had stage one, adenocarcinoma in 1992. Had the lower third of my right lung removed.
Decided against chemo. Went 24 1/2 years with no cancer. Then had stage one in my upper right
lung in 2017. Had radiation. Still doing o.k. I get a PET scan every year.
Harry

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