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I found out in a parking lot

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My story is a crazy one. I was recently diagnosed with stage 4 NSCLC.

Let's go back a few (several) months before diagnosis. In late June 2021 I discovered a very large swollen lymph node on the left side of my neck. My mother passed 23 years ago of lymphoma, so I was concerned and made an appointment with my doctor. It was literally 2 inches long.  An ultrasound showed that it was non-pathologically enlarged (not due to disease). Over the next several months the "node" would shrink, swell up again, and shrink again, all the while I would have what seemed like a horrible sinus drainage. The doctor and I both suspected an allergy. In October 2021, just before vacation with my brother, I noticed I was becoming a little incontinent (a little dribble after getting up from the bathroom). This came and went for two months and I did not think much of it. However, at the end of December 2021 I noticed pink when I wiped, so called the doctor as I suspected a UTI. A urinalysis showed blood in my urine but no infection. Doctor monitored and re-tested two weeks later. In the meantime, I developed a pain in my left calf, like a pulled muscle that wouldn't go away. An ultrasound of the leg in January showed no concern. A second urinalysis showed more blood in urine and a skin infection, but no bladder or urine infection. 

A week later I developed a pain in my left calf that felt like a charlie horse that wouldn't go away. My doctor prescribed a muscle relaxant as well as antibiotics for the skin infection. This was in February. The night I took the antibiotics and muscle relaxant (Tuesday) I became very tired, had night sweats and developed a small cough.  I slept most of the next day. The following morning (Thursday) I felt great. On Sunday night I noticed two small bumps on the back of my right calf.  By Monday night they were red and warm. I made an appointment to see a doctor the next morning (my doctor was not available). This new, much younger doctor, ordered immediate ultrasound on my leg. Not only did it discover DVT in my right calf, but also DVT in my left calf and left pelvic area. I was immediately put on blood thinners (Eliquis). This new doctor was convinced I had cancer somewhere in my body and ordered a chest xray. A chest CT scan was done next which revealed an 8mm GGD nodule and a pulmonary embolism in my right lung. The doctor was convinced I had bladder cancer (given the blood in my urine) and it had spread to my lung.  The day I answered the phone I was just getting ready to go into the grocery store. This new doctor said "The scan came back and did show something. It appears to be a metastasis. I think you have something going on in your abdomen that has spread to your lung. I am sorry to be the one to give your this news, but how are you feeling?"  Seriously? That delivery was horrible! Let alone the news. I called my doctor right away and asked that she relay any news to me moving forward.  (I am extremely grateful for the newer doctor's push to get these scans, but I just did not like the way she relayed news). 

Next up: abdomen CT scan.

My abdomen CT scan showed thickening in my bladder and swollen lymph nodes in my abdomen. All other organs looked good. I was sent to a urologist who performed a cystoscopy (looking into my bladder with a small camera). Although my bladder was red and inflamed (angry, he called it), there were no signs of cancer! Yay!  I was so excited and relieved. I called all my family and told them I didn't have cancer. When I asked my doctor if we should cancel the appointment with the oncologist she said no. There was still the concern about my lung, and now I had 8 lymph nodes on the left side of my neck that had swollen.

The oncologist determined that the small GGD nodule in my lung was the primary tumor. They scheduled a CT scan of my neck to see if there were cancer cells appearing so they could get a biopsy without having to go into my lung. Sure enough, my lymph node biopsy came back positive for lung cancer. And because it had spread, it was automatically stage 4. Oddly enough, I was not scared. I was in warrior mode. But I was also a little pissed. I quit smoking 23 years ago! I come from a family of heavy smokers and I am the one that gets lung cancer. WTF!?

I have a PET scan and brain MRI this week.  My PDL-1 and mutation analysis are due back next week.  I am hoping I am a candidate fro immunotherapy.

I changed my diet several months ago to try and lose 50 lbs. I am down 25 lbs. In January i cut my alcohol and sugar consumption to nearly zero. In the past month I have converted to more of a plant based diet. I feel healthier that I have in years. I feel optimistic and positive about surviving this diagnosis. I don't feel like I am going to die. (And then I sometimes feel guilty for feeling so positive). My doctor says my overall health is excellent, and that, coupled with my positive attitude will play a big part in surviving.  My gloves are on and I am ready for battle!


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Dear Iris,

Wow! What a story. Sorry you have to be here, but good that you got a solid diagnosis after all that. Mine was a bit back and forth, but nowhere near the winding road you seem to be on.

I am sure you will find this forum incredibly useful as you go, and do ask as many questions as you need. Some here are true veterans of the LC journey, while others are fairly new to it (like me). But most have a fighting spirit in common, and combined a HUGE amount of experience.

All the best, Rikke

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