By Jeff Stibelman
March 2024
I used to be first recognized with most cancers of the cervical backbone on January 1, 2017, after experiencing very extreme nerve ache down my complete proper facet. Fortunately, because of the sensitivity of what was to be my operation, my physician despatched me to among the finest surgeons within the nation at USC Keck MD Middle, LA, California. At the moment I used to be instructed at first it was a schwannoma, a non-cancerous lesion, however it was on my principal nerve, therefore the excruciating ache, affecting my complete proper facet. I needed to watch for weeks with lots of ache, since they thought it was benign. I lastly had fairly an in depth surgical procedure, it lasted for a lot of hours. After every week keep in ICU I discovered it was atypical, and it was certainly, most cancers!
Due to the sensitivity of the surgical procedure and concern of paralysis, they solely eliminated 3/4 of the tumor, leaving me with some slight paralysis and naturally the remaining most cancers. Subsequent was radiosurgery radiation to attempt to get the rest. I used to be then included by my surgeon as a part of a research and in his lessons at USC as my case was very uncommon. He wished to maintain me there as a affected person due to it being so uncommon I stayed for 3 months till insurance coverage disallowed me from staying any longer.
Earlier than I left, my physician at USC, who wished to maintain me, taught me what to say, say it and what to ask for and most significantly to advocate for myself. He taught me a lot, he’s an incredible human. So after radiation I went again to my authentic care facility, I used to be seen by a neurologist oncologist each three months for MRIs, labs and scans that included a full physique scan. The whole lot gave the impression to be going fairly effectively and secure till quick forwarding to March of 2021 once I determined being immuno-compromised I might get the COVID vaccine. Earlier than doing so my PCP who I’ve been seeing and knew for a really very long time steered I are available in and he do an entire bodily on me since I hadn’t had one for a pair years. All seemed nice, he listened to my coronary heart and lungs and so they sounded all clear by stethoscope. Nonetheless, I used to be complaining of a slight cough, so my physician determined at the moment to do a chest x-ray, as I hadn’t had one for fairly a while.
Now thoughts you, at this level lots of medical doctors would have simply stated all the things appears to be like good. You most likely have a slight chilly beginning, so go dwelling and get some relaxation and drink lots of fluids. However as a result of I’ve recognized him for therefore lengthy, he determined to take the additional step and provides me the x-ray. He stated go down and do the X-ray and are available proper again up once more so he can learn it as an alternative of ready for it to come back up within the portal. As I walked again within the room, it was evident by the look on his face, which I’ve seen earlier than, and I knew in my coronary heart what it meant when this usually very stoic physician seemed visibly involved. He turned the display and confirmed me what was a really massive mass in my decrease proper 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 confirmed that I had stage 4 non-small cell lung most cancers, with mets to a lymph node, mind and a few bones. The brand new scans additionally referred again to my 2017 chest CT saying that the mass has grown considerably. You’re most likely considering “what, wait, did I miss one thing?”
Yeah, you heard me proper – it was by no means talked about within the radiologist report again in 2017 when it was Stage 1a and operable – and when statistically I had a greater probability of a treatment, or at a minimal, a for much longer life. I used to be misdiagnosed. So off to my oncologist I went who gave me 6 months to a 12 months to stay (sure, I requested) and she or he ordered radiation and chemotherapy to start out ASAP. At this level, realizing I’ve heard these three little phrases earlier than (“you could have most cancers”), I had two methods to go – so to cite certainly one of my all-time favourite films, the Shawshank Redemption, both “I can get busy residing or get busy dying” so I selected life!
By the grace of G-d she additionally did biomarker testing, and proper earlier than I used to be to start out each chemo and radiation I discovered that I had the EGFR mutation Exon 19 Deletion and was capable of do a TKIs focused remedy. So in April 2021 I began Tagrisso (which didn’t exist till solely 6 years in the past, consciousness and analysis did that). Sadly, I nonetheless have the lung mass, however it has shrunken, and my 5 mind lesions and lymph nodes are NED to this point. So far as my bone metastasis, I do what is known as Zometa infusions to strengthen them from fracture. So the excellent news is I’m secure which everyone knows is an enormous win.
Video: Jeff talks about biomarkers
And if not for that easy chest X-ray – and dare I say, COVID – I may not have been right here telling you my story. So, I proceed, what I began from the time of my very first prognosis in 2017 until as we speak, to be an advocate to lift extra consciousness for testing and analysis, to discover a treatment and cease the stigma of this horrible illness known as Lung Most cancers. It may be silent and is the primary most cancers killer. “You probably have lungs, you will get lung most cancers.”
I additionally urge new and beforehand recognized most cancers sufferers, caregivers or anybody affected, to be proactive, to advocate for yourselves. Being quiet doesn’t work. Push for extra solutions, push for extra testing, get second opinions when you’re not getting the consequence. That is what I realized from my misdiagnoses and advocating. I additionally imagine telling your story is essential; once more, staying quiet doesn’t work. No, it’s not all the time simple, however others want to listen to it and we have to inform it, for extra consciousness, to seek out cures for this primary killer. I’m all the time accessible for all my sisters, brothers, caregivers or anybody who’s touched by lung most cancers.
Till then, keep robust however all the time optimistic.