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Linda 24/7

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Hello Everyone, Just been diagnosed with nsclc(adenocarcinoma)after having,chest xray, C scan, PET scan, MRI and 2 biopsies. I'm at stage 4, its in both lungs, surgery is not an option. Monday 11-27-17 I see my oncologists to find out if I might be a candidate for targeted therapies, immune therapies or chemo. Need to hear your experiences and support. I hate all the waiting around for results, it's hard me and my family.

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Linda,

I wish you weren't joining us and rather enjoying your time in "Big Sky" country.  But, I'm glad you did because even though your are Stage IV, radiation is now being used to address multiple tumors in both lungs with curative intent.  One of our members wrote a blog about her experience.  Here is the link.  Here (select the words "What are the different types of external beam radiation therapies (EBRTs?") is more information about radiation including SBRT. This important news because SBRT radiation is as effective as surgery in dealing with tumors.  

I'm fortunate to have had the opportunity to travel extensively in Montana.  An Army Corps of Engineer officer in my younger days, my duties took me throughout the state.  One downside of living in some of the most scenic beauty in the world is Montana's remoteness and consequently difficulty in finding sophisticated treatment centers that may offer the latest in radiation treatments.  But, ask your medical oncologist for a referral to a radiation oncologist.  The latter will know about SBRT and will know where it is available.  If you are a good candidate for SBRT, I suggest you take that course.

Waiting for results, I call it Scanziety -- those who spell better call it Scanxiety -- but the symptoms are the same.  I am wedded to the spelling because I wrote a book about it!  Nearing 14 years of surviving late stage lung cancer, one would think I'd have a little bit less of it.  Not so, I still see my oncologist twice a year and sweat-out waiting for scan results just like everyone else. I suggest you put your waiting time to good use by reading about your disease.  Knowledge is power and as lung cancer survivors, knowledge allows us to ask the "terribly preceptive question" to doctors.  My wife's question about a form of SBRT she read about likely saved my life!  Here is a good place to start your reading. Here is an essay I wrote many years ago that may be helpful.

Come February 4th, Lord willing, my wife and I will collectively paint 14 toenails red, one for each year of living past diagnosis.  There is a story behind the toenail painting but for now your take-away is I've lived nearly 14 years and if I can live, so can you.

Welcome here Linda!

Stay the course.

Tom

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Linda,

I had the same diagnosis: stage IV NSCLC adenocarcinoma in both lungs. At that time systemic treatment by infusion was my only option. I only had KRAS mutation and they didn’t test for PD-L1 then. So it’s still possible that you would be eligible for a targeted therapy or Keytruda right up front. Things will calm down when you know that and have a treatment plan in place. You will not find anyone who has ever said the waiting wasn’t one of the hardest parts. Try to enjoy the rest of the holiday weekend knowing that you’ll know more on Monday.

Cindy

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Hi Linda, 

Welcome here. I had surgery for a Stage 1 nsclc last November and I'm due Monday for my 1-year-out CT scan. I concur with Tom that waiting to find out what happens next is the pits. You'll find hope and informaiton on this forum. Stay with us and hang in there.

Bridget O

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Hi, Linda.  I'm also stage IV adenocarcinoma.  For better or worse, I didn't test positive for any of the mutations so I was not eligible for any of the targeted therapies.  Surgery removed my primary tumor, and since then, I've had chemo and radiation.  I just celebrated 21 months since diagnosis.  

Waiting and not knowing is hard.  It stinks.  We're here for you.  We understand. 

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Linda - I am in the same boat. My diagnosis came 11/30. I don't even know what stage or if the therapy they are telling me will work. Surgery is out. I am still working and and trying to stay positive. I hope for the best for you, as our situations are very similar. Seems like lots of good people and support here though. Best to you. 

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I understand just how anxious it can be waiting for results because im seeing the oncologist in 2 hours to see what my next treatment is because the 12 month scan shows some lymph nodes are bigger than last scan but i know its not in the the place i had surgery or in the liver so im hoping some good news and not really bad news....please wish me luck 

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