You are so brave to speak up and share your story. I understand your anger, frustration and fears...I had a similar story 11 years ago!
The unfair stigma is horrible even for those of us Who Never Smoked! We all know smoking is very bad, right? But how many people know nicotine is the most addictive substance on the planet? I learned that in Nicotine rehab, even though I never smoked...just
days after surgery to remove a 3cm tumor, all of my upper left lung lobe and a wedge in my lower left lung lobe. 11 years ago there
was only 15% chance of living after lung cancer diagnosis. Two years before my diagnosis, I had a chocking cough and local doctors would not listen to me or give me chest X-ray! I thought I had SARS or TB due to my career and international traveling.

There is hope...because research has come such a long way and people are living after proper diagnosis and proper treatment.

Honestly, traveling to a facility like MD Anderson or Mayo Clinic is worthwhile, a second opinion maybe saving your life and your quality of life and mental sanity. It sounds like you have spunk! What are you waiting for?

I traveled to Mayo Clinic in Rochester MN. A team of doctors and staff listened with care and compassion and my thorasic team follows me to this day, with great care and respect. The cost in comparison to private practice where we live is triple the price and to this day the care where we live is very poor for lung cancer. I have seen friends who refuse to "get out of Dodge" and die a horrible death. The people I have convinced to go to a medical research hospital like Mayo Clinic are living and thriving, like me!

So pack up the husband and drive...you may be able to find discounted hotel on HOTWIRE.com. Purchase a parking pass all to save money. If you decide to fly Delta has a Mayo Clinic special flight fare and you can change the dates. Also, there are often facilities who will provide free housing as well.
Let's stay connected. I know you can do this...but find a medical team who live for lungs and are compassionate. My favorite question to surgeons is: "So, how many of these procedures have you done?" At Mayo Clinic my favorite answer was "We have done 2,500 VATS procedures and 5,000 lung transplants!": The best news is with the brilliant medical minds and loving support, I am alive and thriving today. Lung Cancer Became My Blessing! Take that anger to the best facility you can find.If they won't give you an appointment, drive to their medical hospital and ask for a lung health specialist. While in the waiting rooms think about reading the book: Stress Free Living by Dr Amit Sood and then pass the book onto your loved ones and friends. Look at this as an amazing lesson. Be kind.

Sincerely,

Take care and Cyber Hugs,

margot69 - I sent you a personal message so look for it!

Hi Margo-
So sorry you have to go through this...
@llwortman has some great insight!
If there is any way, my suggestion is to get to a lung cancer treatment clinic NOW! My recommendation is Mayo Rochester...or possibly Arizona. However, I would start with Rochester.
You need to get to a clinic while you are still strong!
I did a simple google search, in view of your inability to travel.
Do you know these folks? https://www.communitymedical.org/services/Lung-Services
Check them out if they are anywhere close and reputable! You would need a referral...
My wife went through similar dead end path with pulmonologist and finally our grown children forced us to take action and go to Mayo Rochester a two day drive. We put a letter together describing our diagnosis or lack thereof, packed up her records and fedexed the package to Mayo. Within 48 hours they concluded that she had Non Small Cell Lung Cancer!
Within two weeks my wife had two right lobes in her right lung removed with the VATS procedure....by the same thoracic surgeon that did Linda’s lung surgery! All, with “self referral” by mail and phone...and of course a two day drive to get there!!
That was in 2015...three years later, she enjoys a goodbquality of life with stage 4 metastatic lung cancer, thanks to Mayo and her strength and stamina, and of course a strong faith in God!
Do the lung biopsy at a lung cancer clinic such as Mayo...then have a molecular study of the specimen to determine the EXACT mutation you have.
Best of luck to you and your family with getting through this stressful time!

Welcome and glad you found this site! I'd RUN FROM any medical place that said it "doesn't follow" the current guidelines on CT scans. At 58, it's what helped identify mine in March while it was still small enough to do surgery. In my case, when putting together questions for the local surgeon that our docs recommended I found that although he had a good reputation the hospitals around us were way down the charts. And, so we contacted Mayo and made an 8 hour drive only to pull into the hotel parking lot and see license plates from way further than we'd driven. The sense of calm that people have in a place where everyone has trust in the care (and by lunch when a doctor carrying his lunch stopped because we looked lost we knew it was more than even the medical care) just can't be overstated. Also, I'm not sure I understood @llwortman as far as triple the price. I didn't do a $ comparison, but at home they said after surgery I'd be in the hospital a week, with the first 2 nights in ICU. Well, at Mayo they said I'd be in the hospital 4 nights and I'd be up walking the 1st night- and I was! So, even if they charged more per day there were no ICU nights and less total days. I know that saved me, in sanity alone. Best wishes!