Susan Cornett

Jill, your oncologist is mistaken. I'm Stage IIIB and had biomarker testing. It is now standard practice even for Stages 1 and 2. I had chemo and radiation before starting a targeted therapy for my EGFR Exon 19 deletion mutation. Please press for at least a liquid (blood) biopsy to be sent for Next Generation Sequencing. 
For me, chemo wasn't too bad but radiation was rough. The lymph nodes being treated were right on top of my esophagus and I got a wicked case of painful esophagitis. The best thing to do is get a palliative care specialist on your care team before starting treatment. 
If your oncologist declines to do any biomarker testing, I would seek a second opinion. 

Hi Jill!  
Yes! Starting treatment alongside with our dear Jeopardy friend, Alex Trebeck…. A true example of survivorship with a difficult diagnosis.  
ECHO Lou’s comments about palliative care, for some reason it’s rarely offered (because of the old way of medical training).  I slogged through terrible targeted therapy side effects then I finally asked for palliative care and then finally got some relief.  
Also you want to line yourself up with a physical therapist to help restore your stamina.  No reason to wait, can be done once a week…. 
I forget, what were your biomarker test results? 
Time to get the show on the road….
Michelle

Welcome Samantha,
"The feeling of expecting something bad...." Oh my, I completely understand. I'm an 18-year survivor of diagnosed Stage IIIB, progressed Stage IV, non small cell, squamous cell, lung cancer and I still have that feeling. I'm nearing my annual CT scan screening and that feeling is resonating. I call it scanziety. 
So treatment arrested my disease but it did nothing to stop scanziety. I wish I had a magic wand that would wipe away our feelings of doom. But instead, consider this point: if I can live, so can you!
Autumn is fantastic in British Columbia. The mosquitos departed, the Tamarack trees turn a brilliant yellow, and the temperatures are pleasantly cool. Even the rain stops depending on where one is but British Columbia Autumn can be heaven. So, let's set a goal to frolic outdoors this Autumn. 
Stay the course.
Tom

I received my 6 month scan results today and I'm happy to say that I'm NED. I've been NED for almost 4 years. Scanxiety still gets the best of me - no sleep last night. In the past, my results were not available to me online but there's been a change at Super Doc's office so they're posting online now. I got the alert last night but I couldn't look! Maybe next time...

I'm late to this part of the conversation. Has anything changed with your insurer? You may have grievance appeal options and/or you can file a complaint with your state's department of insurance.

I'm late to this part of the conversation. Has anything changed with your insurer? You may have grievance appeal options and/or you can file a complaint with your state's department of insurance.

I'm late with the congratulations, but they are *very* heartfelt. 
 
K

VERY happy to hear this, Susan ❤️

Yay!

Lily - 
I agree with Lou - talk to her or find a new doc. If you aren't 100% happy or comfortable with your oncologist, it makes it that much more difficult to ask questions or trust the treatment plan. 
I've also had Carboplatin. My biggest side effect was hair loss but it didn't seem to affect my hearing like the cisplatin did.
Keep us posted.

I received my 6 month scan results today and I'm happy to say that I'm NED. I've been NED for almost 4 years. Scanxiety still gets the best of me - no sleep last night. In the past, my results were not available to me online but there's been a change at Super Doc's office so they're posting online now. I got the alert last night but I couldn't look! Maybe next time...

Oh Glenn - I hate to hear this. Just the fall alone would suck. I hope your team has some good options to take a swing at this cancer again.

I received my 6 month scan results today and I'm happy to say that I'm NED. I've been NED for almost 4 years. Scanxiety still gets the best of me - no sleep last night. In the past, my results were not available to me online but there's been a change at Super Doc's office so they're posting online now. I got the alert last night but I couldn't look! Maybe next time...

Kamoto - there was a tumor on my thyroid per the PET scan. I was told it was rare for lung cancer to metastasize to the thyroid. Ha! I had metastatic lung cancer in my thyroid AND thyroid cancer. Fortunately surgery addressed the thyroid issue. It's never boring, is it?

Lily - 
I agree with Lou - talk to her or find a new doc. If you aren't 100% happy or comfortable with your oncologist, it makes it that much more difficult to ask questions or trust the treatment plan. 
I've also had Carboplatin. My biggest side effect was hair loss but it didn't seem to affect my hearing like the cisplatin did.
Keep us posted.

Kamoto - there was a tumor on my thyroid per the PET scan. I was told it was rare for lung cancer to metastasize to the thyroid. Ha! I had metastatic lung cancer in my thyroid AND thyroid cancer. Fortunately surgery addressed the thyroid issue. It's never boring, is it?

Lily - 
I agree with Lou - talk to her or find a new doc. If you aren't 100% happy or comfortable with your oncologist, it makes it that much more difficult to ask questions or trust the treatment plan. 
I've also had Carboplatin. My biggest side effect was hair loss but it didn't seem to affect my hearing like the cisplatin did.
Keep us posted.

Lily - 
I agree with Lou - talk to her or find a new doc. If you aren't 100% happy or comfortable with your oncologist, it makes it that much more difficult to ask questions or trust the treatment plan. 
I've also had Carboplatin. My biggest side effect was hair loss but it didn't seem to affect my hearing like the cisplatin did.
Keep us posted.

I see the local oncologist on Monday.  Mayo is pretty adamant, no treatment though which isn't authorized by them.  I guess this would eliminate me from any drug trials.  My tumor score in the lung was 5%.  So maybe that is why I'm not high priority on the list.  That seems to be a good thing. 

Thank you everyone. There are so many positive posts here. I want to direct my sister and sons to read these. I'm concerned about their mental and physical health through this. I make sure to ask how they're doing because we're in this together.

That's great news Susan really happy for you 

Susan,
Sorry to be late to this party but CONGRATULATIONS!!!.  NED is always great news.
Lou

I received my 6 month scan results today and I'm happy to say that I'm NED. I've been NED for almost 4 years. Scanxiety still gets the best of me - no sleep last night. In the past, my results were not available to me online but there's been a change at Super Doc's office so they're posting online now. I got the alert last night but I couldn't look! Maybe next time...

I received my 6 month scan results today and I'm happy to say that I'm NED. I've been NED for almost 4 years. Scanxiety still gets the best of me - no sleep last night. In the past, my results were not available to me online but there's been a change at Super Doc's office so they're posting online now. I got the alert last night but I couldn't look! Maybe next time...

Oh Glenn - I hate to hear this. Just the fall alone would suck. I hope your team has some good options to take a swing at this cancer again.