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Ashley S

Stage IA 18 months post surgery scan with spots

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I’m a 35 year old non-smoker who was diagnosed 18 months ago with stage IA Adenocarcinoma. Had surgery to remove upper left lobe. Had 5 very small (2mm) spots that were found post surgery but were determined to be there all along. Have been watching them closely with no change over a year. Doctor suspected they were Granulomas. Now two of them have “appear to have grown” from 3mm to 7mm in 6 months but oncologist said it might just be the way a CT scan does slices. He said to be optimistic and have another scan in 2 months. My Christian faith is strong but it’s hard not knowing anyone who’s been through this issue with the spots. Anyone had a similar issue where it turned out to be the scan or just Granulomas? Thanks!! 

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Ashley,

Welcome here.  Oh yes, I've had nodules larger, then smaller, then gone in successive scans.  The here today, gone tomorrow phenomena is a large component of Scanziety.  I think at this point in time, a repeat scan in 2 months is prudent.  I started doing my own nodule configuration management by recording the location and size of all my nodules after each scan.  You are new on this journey and you might consider that same strategy.  I use a spreadsheet, but ruled paper would work just fine.  Record the date of scan, the interpretative radiologist, and the location and size of each nodule from the radiology report.  After a while, you'll have data to defend against nodule madness.  Also, ensure you get a copy of each scan report and keep them on file.

I hope your nodules are gone 2 months from now!

Stay the course.

Tom  

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I agree with Tom.  Or, just as good as "gone" would be to see them the same size as now or back to the size they first appeared to be.  It does make a difference in the angle and positioning of the "slice" of the scan in how big they appear.  I, too, have the appearing/disappearing nodules.  They apparently sometimes just don't get captured.

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Thank you both for your responses! I’m encouraged but also still worried. It seems many of the stories I’ve read.... the spots end up being cancer. I’ve since done my own charting of their progression. I’ve come to determine that either they are cancer (since they appear to have grown) or they aren’t and simply a product of the scan and possibly a different degree of accuracy and precision with each radiologist who reads them. I’m frustrated that’s it’s not the same radiologist every time and that they likely aren’t looking back at all the scans before, just the most recent. Praying for the best outcome, which is that they haven’t changed or are gone. Also second guessing the doctors decision not to place me on adjuvant chemo. So many questions and things to wonder about. Hope eternal!!

 

 

 

 

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Even though it's not the same radiologist, your doctor who gets the scans has your previous ones.  So that doctor can compare them all.  That's the doctor that has to make the ultimate determination about whether the scans reveal possible cancer.

And based on the research I've read, adjuvant chemo is not recommended for Stage Ia because it is believed to cause more harm than good.  I was Stage Ib, which is the only stage where it's almost a coin toss as to whether chemo does more good than harm, so the doc gave me the choice, and I opted not to have it.

 

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I’m also struggling with the idea that if they are cancer that it’s a death sentence. I have the EGFR mutation which I’m told is a good thing but my thought is that eventually my body would become immune and the targeted therapy would stop working. Do you know of cases where adenocarcinoma “came back” and it was treated and went into remission for more than 5 years? I’m in the stage of  trying to believe “ok IF it is cancer.... I could beat it” I just need hope ( not false hope) that I could beat this. Trying to stay positive but sometimes it’s hard. 

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Ashley,

I didn't have adenocarcinoma but rather squamous cell.  In 2004, very few treatment options were available: no precision radiation or immunotherapy (targeted therapy will not work on squamous cell).  Counting surgery as a treatment, I had 4 recurrences after no evidence of disease (NED) treatment.  Today, I'm celebrating 15 years of life beyond diagnosis. There is always hope. After my third recurrence, hope was my only treatment available until the FDA made a surprise approval of precision radiation for treating lung tumors. So, my cancer came back, and I've had no evidence of disease (NED) for more than 5 years.  There are many of us in the lung cancer community

It is hard to stay positive.  It is hard to carry on with ordinary life having the "Sword of Damocles" dangling over your neck. But, if you've chosen treatment, you've chosen life. Do something you enjoy with your life extension! I've studied statistics extensively. Unfortunately, medical statistical models like those used to predict 5-year survival are notoriously inaccurate. Read this to learn why.

Your EGFR expression is indeed a good thing. It means there are many more avenues of treatment available to you. I hope you succeed in remaining positive about your treatment outcomes.  Further, I hope that 15 years from now, you are helping someone new on this forum.

Stay the course.

Tom

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Hi Ashley, 

You might want to check out the book,  "Something More Than Hope" by Diana Lindsay.  She's an EGFR survivor (13+ Years), given months to live at initial diagnosis.  She was an early pioneer of the targeted therapies.   It is the most inspiring book for lung cancer mutants.   There is also an EGFR Support Face Book page- filled with very inspiring stories of long term survivors.   As Tom says, being a "mutant" works in your favor; the treatments can be very effective.   There's a lot of research underway to address resistance.  So I'd recommend staying away from the scary stuff on the internet.   It's too dated to be useful at this point.   

Michelle  

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