I’m a Non-Smoker with Stage 4 Lung Cancer

As advised to Nicole Audrey Spector

I used to be 43 years outdated, a instructor turned stay-at-home mother of three and in nice bodily form. I had at all times been tremendous on prime of my well being. Any routine screenings, like Pap checks and mammograms, I had proper on time, and I used to be at all times very in tune with my physique.

So, once I got here down with a cough that simply wouldn’t give up, I took motion quick and went to my main care supplier (PCP). She identified me with a post-viral cough. I used to be prescribed steroids, which knocked out the cough fully. However as soon as I completed them, the cough got here again worse than earlier than.

My PCP was out, so I noticed one other supplier. He suspected I had exercise-induced bronchial asthma and advised me I wanted to see an allergist. I made an appointment, however they couldn’t get me in for six months.

As I waited for that appointment, I knew one thing was actually incorrect. Not solely did I’ve a horrible cough, I additionally had a heaviness in my chest that jogged my memory of once I’d had pneumonia years prior. So I requested my PCP for a chest X-ray. Initially he refused my request, saying it might be a waste of time as a result of my lungs had been too clear.

However I insisted and at last my PCP (who would say snide issues like, “I’m the physician right here,”) gave me one. After reviewing my X-ray, he known as to say I had pneumonia and put me on antibiotics. I took them as prescribed however they made no distinction. As soon as I used to be completed with them, I used to be placed on stronger antibiotics. However even as soon as these had been completed, there was no enchancment in my signs.

I used to be then identified with antibiotic-resistant pneumonia, and spent 4 days within the hospital, the place I noticed a pulmonologist. He carried out a process known as a bronchoscopy to look in my lungs for any abnormalities like a mass, which might then be biopsied for additional testing.

The pulmonologist advised me that every thing seemed nice and that residual pneumonia may take some time to resolve. I used to be instructed to comply with up with my PCP in every week and with him, the pulmonologist, in two weeks.

Per week later, I used to be nonetheless in horrible form with the identical painful, fixed cough and heaviness in my chest. I known as my PCP they usually mentioned they’d no availability to see me. So what did I do? I went in individual and refused to depart till, ultimately, a nurse practitioner got here out.

I feel the nurse practitioner got here out extra to conduct a psychological well being verify than a bodily examination — however as soon as she noticed and listened to me, she despatched me out for a same-day chest CT scan.

That night, I obtained a name with the information that my CT scan confirmed one thing regarding and that I wanted to go to the ER. I rushed over.

An ER physician got here into the room we had been in and turned his pc towards me. On the display was my CT scan.

“Have you ever seen this?” he requested. I advised him I had not.

“Learn this line,” he mentioned.

The road mentioned, “lytic lesions on T6 and L3; extremely regarding for metastatic most cancers.”

I used to be in shock. I knew what “metastatic” meant. It meant most cancers. And it meant most cancers that had unfold.

My mom and husband had been with me as I used to be being admitted to the hospital. I used to be hyperventilating and in tears. All I may consider had been my children and the grave risk of them having to develop up and not using a mother.

As soon as admitted, I had a thoracentesis, a process to take away fluid or air from across the lungs. It was unsuccessful. I wound up with an emergency chest tube to empty fluid off my lungs. The fluid was examined and got here again as cancerous. A bone biopsy revealed stage 4 non-small cell lung cancer (NSCLC).

I used to be so shocked you possibly can have knocked me over with a feather. Stage 4 lung most cancers? As a younger lady with no historical past of smoking and who had not grown up in a smoking residence? It was all incorrect. And so unfair.

I wanted a biomarker testing completed to find out whether or not I had a driver mutation. The biomarker testing revealed that I did: EGFR exon 19 deletion, probably the most frequent driver mutations in NSCLC in individuals identified with lung most cancers beneath the age of fifty.

I had one other bronchoscopy. The pulmonologist who carried out it noticed a mass instantly and blasted the pulmonologist who’d completed my first bronchoscopy, saying that this mass had been there for no less than a number of months, probably even a 12 months.

The primary pulmonologist had royally screwed up. The scans had been carried out identically, but one way or the other, he missed it. Who is aware of what that value me by way of life expectancy?

As soon as the mutation was detected, I used to be placed on a focused remedy, reasonably than chemotherapy. That began on December 30 – about 4 months after the cough started.

Inside a number of weeks of beginning my remedy, I felt higher. The cough went away and it healed all my bone metastases.

However issues weren’t trying nice for me. My thoracic oncologist advised me I had two years to reside.

Once more, all I may take into consideration had been my children.

Fortuitously, I responded properly to the focused remedy, which shrank my main tumor by 70%. I underwent eight classes of radiation to additional shrink the first tumor. My physique responded favorably, and after that radiation, I used to be advised I may probably reside one other 5 years.

And right here we’re. 5 years later.

Leah and household, 2024 (Photograph/Jennifer Edlin Images)

Over these previous 5 years, I’ve linked with lots of people who’ve lung most cancers regardless of having by no means smoked.

Final 12 months, Lindi, one other non-smoking EGFR NSCLC affected person and Bianca, a caregiver to an EGFR affected person, and I obtained collectively to consider how we may assist others. We get a lot messaging from society and medical professionals about smoking placing you in danger for lung most cancers and the significance of quitting smoking — and that’s nice data for those who smoke — nevertheless it leaves plenty of us out.

As many as 1 in 5 individuals identified with lung most cancers are non-smokers, and nearly all of that quantity are ladies beneath 50.

In March 2024, the three of us launched a 501(c)(3) nonprofit group known as Younger Lung Most cancers Initiative (YLCI). It’s gone gangbusters. We’ve taken off in methods I couldn’t think about on social media and have been found by of us all over the world, a lot of whom went by means of the identical irritating runarounds with clueless or dismissive docs.

By my work with YLCI, I’ve linked with good docs, together with a surgeon who, to my delighted shock, authorised me for a center lobectomy and first tumor removing, one thing I used to be beforehand advised was off limits for me. I underwent surgical procedure six weeks in the past and am nonetheless recovering, however doing properly.

My most up-to-date chest scan confirmed that my lungs look good! However this doesn’t imply I can go off my focused remedy. I’ll at all times want that, together with frequent scans to verify for metastases.

It’s trying like I could possibly be right here for an additional 5 to 10 years, however probably for much longer, as science continues to advance. I actually haven’t any plans of leaving anytime quickly.

I’m hopeful and I’ve no regrets. I do know that I went above and past in being my very own advocate. Maybe the one factor I’d change, trying again, is to have switched PCPs as quickly as I felt disrespected by mine.

However there’s nothing to be completed about that now. What I can do, and what I do do, is deal with serving to others who know this profound wrestle all too properly. I additionally put nice emphasis on tending to my psychological well being (I gladly take antidepressants) and having a humorousness about issues.

We’re all on this collectively, you already know? And collectively, we are able to make a distinction not simply in each other’s lives, however in the whole manner we see and perceive lung most cancers.

This instructional useful resource was created with assist from Daiichi Sankyo and Merck.

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