I’m a Non-Smoker with Stage 4 Lung Most cancers

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I used to be 43 years outdated, a instructor turned stay-at-home mother of three and in nice bodily form.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 high of my well being. Any routine screenings, like Pap assessments 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 stop, I took motion quick and went to my major care supplier (PCP). She identified me with a post-viral cough. I used to be prescribed steroids, which knocked out the cough utterly. 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 fallacious. 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 will be a waste of time as a result of my lungs have 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 referred to 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 accomplished with them, I used to be placed on stronger antibiotics. However even as soon as these have 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 referred to 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 all the pieces appeared nice and that residual pneumonia might take some time to resolve. I used to be instructed to observe up with my PCP in every week and with him, the pulmonologist, in two weeks.

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

I believe 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 have been in and turned his pc towards me. On the display screen 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 have been with me as I used to be being admitted to the hospital. I used to be hyperventilating and in tears. All I might consider have been my children and the grave risk of them having to develop up with out 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 most cancers (NSCLC).

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

I wanted a biomarker testing accomplished to find out whether or not I had a driver mutation. The biomarker testing revealed that I did: EGFR exon 19 deletion, one of the vital widespread driver mutations in NSCLC in individuals identified with lung most cancers underneath 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 accomplished my first bronchoscopy, saying that this mass had been there for at the least a number of months, presumably even a 12 months.

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

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

Inside a couple of weeks of beginning my therapy, 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 might take into consideration have been my children.

Luckily, I responded nicely to the focused remedy, which shrank my major tumor by 70%. I underwent eight periods of radiation to additional shrink the first tumor. My physique responded favorably, and after that radiation, I used to be advised I might presumably reside one other 5 years.

And right here we’re. 5 years later.

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

Over these previous 5 years, I’ve related 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 might 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 lots of us out.

As many as 1 in 5 individuals identified with lung most cancers are non-smokers, and the vast majority of that quantity are girls underneath 50.

In March 2024, the three of us launched a 501(c)(3) nonprofit group referred to 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 people all over the world, a lot of whom went via the identical irritating runarounds with clueless or dismissive docs.

By my work with YLCI, I’ve related with good docs, together with a surgeon who, to my delighted shock, permitted 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 nicely.

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

It’s trying like I may very well be right here for an additional 5 to 10 years, however presumably for much longer, as science continues to advance. I definitely 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 might change, trying again, is to have switched PCPs as quickly as I felt disrespected by mine.

However there’s nothing to be accomplished about that now. What I can do, and what I do do, is concentrate on serving to others who know this profound battle all too nicely. 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 understand? And collectively, we will make a distinction not simply in each other’s lives, however in your complete method we see and perceive lung most cancers.

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

Have your personal Actual Ladies, Actual Tales you need to share?Tell us.

Our Actual Ladies, Actual Tales are the genuine experiences of real-life girls. The views, opinions and experiences shared in these tales will not be endorsed by HealthyWomen and don’t essentially replicate the official coverage or place of HealthyWomen.