Jeff

By Jeff Stibelman
March 2024

I was first diagnosed with cancer of the cervical spine on January 1, 2017, after experiencing very severe nerve pain down my whole right side. Thankfully, due to the sensitivity of what was to be my operation, my doctor sent me to one of the best surgeons in the country at USC Keck MD Center, LA, California. At that time I was told in the beginning it was a schwannoma, a non-cancerous lesion, but it was on my main nerve, hence the excruciating pain, affecting my whole right side. I had to wait for weeks with a lot of pain, since they thought it was benign. I finally had quite an extensive surgery, it lasted for many hours. After a week stay in ICU I found out it was atypical, and it was indeed, cancer!

Because of the sensitivity of the surgery and fear of paralysis, they only removed 3/4 of the tumor, leaving me with some slight paralysis and of course the remaining cancer. Next was radiosurgery radiation to try to get the remainder. I was then included by my surgeon as part of a study and in his classes at USC as my case was very unusual. He wanted to keep me there as a patient because of it being so rare I stayed for 3 months until insurance disallowed me from staying any longer.

Before I left, my doctor at USC, who wanted to keep me, taught me what to say, how to say it and what to ask for and most importantly to advocate for myself. He taught me so much, he is an amazing human. So after radiation I went back to my original care facility, I was seen by a neurologist oncologist every three months for MRIs, labs and scans that included a full body scan. Everything seemed to be going pretty well and stable until fast forwarding to March of 2021 when I decided being immuno-compromised I would get the COVID vaccine. Before doing so my PCP who I’ve been seeing and knew for a very long time suggested I come in and he do a complete physical on me since I hadn’t had one for a couple years. All looked great, he listened to my heart and lungs and they sounded all clear by stethoscope. However, I was complaining of a slight cough, so my doctor decided at that time to do a chest x-ray, as I hadn’t had one for quite some time.

Now mind you, at this point a lot of doctors would have just said everything looks good. You probably have a slight cold starting, so go home and get some rest and drink a lot of fluids. But because I’ve known him for so long, he decided to take the extra step and give me the x-ray. He said go down and do the X-ray and come right back up again so he can read it instead of waiting for it to come up in the portal. As I walked back in the room, it was evident by the look on his face, which I’ve seen before, and I knew in my heart what it meant when this normally very stoic doctor looked visibly concerned. He turned the screen and showed me what was a very large mass in my lower right lobe. He ordered a PET scan, CT scan, and MRIs. Then he referred me to see a pulmonologist who did an Ebus (scoping and sampling of the mass for testing) which showed that I had stage 4 non-small cell lung cancer, with mets to a lymph node, brain and some bones. The new scans also referred back to my 2017 chest CT saying that the mass has grown significantly. You’re probably thinking “what, wait, did I miss something?”

Yeah, you heard me right – it was never mentioned in the radiologist report back in 2017 when it was Stage 1a and operable – and when statistically I had a better chance of a cure, or at a minimum, a much longer life. I was misdiagnosed. So off to my oncologist I went who gave me 6 months to a year to live (yes, I asked) and she ordered radiation and chemotherapy to start ASAP. At this point, knowing I’ve heard those three little words before (“you have cancer”), I had two ways to go – so to quote one of my all-time favorite movies, the Shawshank Redemption, either “I can get busy living or get busy dying” so I chose life!

By the grace of G-d she also did biomarker testing, and right before I was to start both chemo and radiation I found out that I had the EGFR mutation Exon 19 Deletion and was able to do a TKIs targeted therapy. So in April 2021 I started Tagrisso (which didn’t exist until only 6 years ago, awareness and research did that). Unfortunately, I still have the lung mass, but it has shrunken, and my five brain lesions and lymph nodes are NED so far. As far as my bone metastasis, I do what is called Zometa infusions to strengthen them from fracture. So the good news is I’m stable which we all know is a big win.

And if not for that simple chest X-ray – and dare I say, COVID – I might not have been here telling you my story. So, I continue, what I started from the time of my very first diagnosis in 2017 till today, to be an advocate to raise more awareness for testing and research, to find a cure and stop the stigma of this terrible disease called Lung Cancer. It can be silent and is the number one cancer killer. “If you have lungs, you can get lung cancer.”

I also urge new and previously diagnosed cancer patients, caregivers or anyone affected, to be proactive, to advocate for yourselves. Being quiet does not work. Push for more answers, push for more testing, get second opinions if you’re not getting the result. This is what I learned from my misdiagnoses and advocating. I also believe telling your story is very important; again, staying quiet doesn’t work. No, it’s not always easy, but others need to hear it and we need to tell it, for more awareness, to find cures for this number one killer. I am always available for all my sisters, brothers, caregivers or anyone who is touched by lung cancer.

Until then, stay strong but always positive.