How I found out…

[ToniH]

     I went to the hospital August 10th 2021 because my doctor thought I had suffered a stroke. Hold on that’s the middle of the story let me start back at the beginning. I woke up on Tuesday morning about 4:35am got out of bed and fell on the floor. My entire left leg up to my hip was numb and had no feeling, my face felt all fuzzy and weird. My fall woke up my husband, once he made sure I was not broken he took my BP and called our Doctor. She advised us to go to ER ASAP. So I took a shower, got dressed, and went to the ER which is only about eight minutes away five if you hurry. 
     It was peak C-19 season so Hubs wasn’t allowed past the triage nurse and I was alone with all the ER docs, nurses and technicians. After 8.5 hours of IVs, X-rays, CTs, pain killers, anti-seizures drugs, blood thinners, blood pressure meds and loads of fun with a bedpan they told me I didn’t have Covid or a stroke but they were admitting me. I got 5 minutes with Hubs and away we went, me and the transport guy upstairs to the room for 3 days of more hospital fun. My headache was the worst migraine of my life — they finally gave me a pain cocktail in the IV and I went to sleep. 
     The next few days were a barrage of MRIs, CTs with contrast on my chest and brain. That’s the test that makes feel like your peeing your pants but your not, I’m not a fan at all for the record. More EKGs, EEGs, sonograms and I honestly don’t remember what other tests. They again confirmed I didn’t have a stoke, just a small brain aneurysm in my left temple — no problem right LOL? And the real big gotcha were the two masses they found one in each of my lungs. The care team proceeded to explain that I really needed to see and talk to a pulmonary doctor and have a biopsy of the masses they found. However, due to Covid they were short handed in the pulmonary department and would not be able to do the procedure at that time. So I was released with referrals for five specialists and off we went to the races. 
    Finally on September 22, I had the bronchoscopy and the cancer was confirmed as adenocarcinoma NSCLC.     My lung resection surgery was November 5th which confirmed the diagnosis as stage IIIB T3N2 and they removed 20 lymph nodes. Early preliminary testing shows the EGFR 19  mutation. I keep waiting for the phone to ring and my primary care doctor to tell they were wrong and somewhere during that phone call I wake up because this has really just been the worst imaginable nightmare of my life.  
 

[Tom Galli]

Toni,

You certainly had a diagnostic nightmare! I had my right lung resected after staging at IIIB and a host of lymph nodes removed to boot! My flavor of lung cancer was squamous cell. When diagnosed, the only chemo available was Taxol and Carboplatin and I've had plenty of infusions. One hesitates to speak of good fortune and lung cancer, but your adenocarcinoma with the EGFR exon 19 deletion (I'm assuming that is what you meant by "EGFR 19 mutation") has very effective treatment possibilities. Here is some insight into EGFR (select the right arrow [>] EGFR). Note also "osimertinib (Tagrisso®) as adjuvant therapy" is now FDA approved. Adjuvant therapy is further treatment after surgery to sweep the blood and lymphatic systems of cancer cells and it is something you should discuss with your medical oncologist.

For the record, there is life after lung removal and indeed after lung cancer. I was diagnosed in February 2004 and my lung was removed in March 2004. I've had many recurrences requiring further treatment but none of that interfered with my life. Before COVID, we enjoyed long transatlantic cruises followed up with jaunts through European countries. One lung slowed my climb to the castle at Edinburgh but I made it to the top!

So welcome here. You've found a place with very experienced survivors who can answer questions and share their lives after a lung cancer diagnosis.

Stay the course.

Tom

[Judy M2]

Toni, what an experience you've had! But just think, without that fall you could have gone on for some time without your lung cancer being caught. 

Glad you were able to have surgery and that's now all behind you. I was diagnosed at the same stage as you but I wasn't a candidate for surgery. Instead I had chemo and radiation and afterward started Tagrisso for my EGFR Exon 19 deletion mutation. Believe me, Tagrisso is so much easier than chemoradiation. 

If indeed you have an Exon 19 deletion (and not an Exon 19 insertion), you would need a medical oncologist to prescribe Tagrisso (if that is your treatment plan). It's very expensive and only partly covered by insurance. But the manufacturer does offer financial assistance if you qualify. Your oncologist can handle that for you. 

We are all pretty shocked when we are diagnosed, and there is a lot to learn about this disease. When I received my diagnosis more than 2 years ago, my primary doctor told me that lung cancer isn't a death sentence anymore. And for me so far, it's true. I started Tagrisso in March 2020 and finally had No Evidence of Disease (NED) in April 2021. A few side effects but they are manageable. It's different for everyone. 

If you do start Tagrisso, there are a few private Facebook groups that you might want to join. Please let us know what your plan is. Hang in there!