In March, 2021, 37 year old nurse-turned-stay-at-home-mom Stephanie Williams felt a wheezing sensation at the base of her throat. It was annoying, but hardly debilitating. She would find herself coughing mid-sentence and, because it would come and go, she thought it might be a touch of allergy-induced asthma, or, perhaps something related to Covid-19. She was not concerned, but made a mental note to mention it to her doctor when she had her annual physical in September.

During her annual, she asked her doctor if she would order a chest x-ray. Fortunately for Stephanie, the doctor obliged and sent her down the hall right then and there. Stephanie had a clear shot of the screen as the images were loading. As a registered nurse, she knew a thing or two about x-rays. Stephanie noted that there was a large cloudy spot on her right lung. She was not too concerned about this, however. Lung cancer was so far from Stephanie’s mind that, when mentioning what she’d seen to her husband she quipped, “must’ve been some dust on the lens.”

Figuring Out Stephanie’s Personalized Lung Cancer Treatment

Days later, she met with a surgeon. Immediately they ordered a PET scan. The results were promising – the cancer seemed to be confined to Stephanie’s lung. A bronchoscopy/biopsy was also done, samples from seven lymph nodes. These results confirmed a cancerous lesion (adenocarcinoma) with the exception of one lymph node, which was compromised in the process, all these results came back negative for malignancy. The medical team suspected that Stephanie’s adenocarcinoma was at Stage III.

The next course of action was a lobectomy. The plan/hope was that the surgeon would be able to complete the lobe removal robotically. The mass proved incompatible with this procedure. So Stephanie underwent an open thoracotomy. The thoracic surgery team removed both the upper and middle right lobe. Stephanie’s recovery was not easy.

But upon discharge, she received the news that her margins and lymph nodes were indeed clear. There had been no plural or circulatory invasion, thus her doctor deemed her cancer stage II –the best pathology report possible. Per today’s standard protocol, the doctor sent her tumor samples for genetic testing. The results came back identifying the biomarker ALK+. Following four rounds of chemotherapy treatment, Stephanie’s medical team is cautiously optimistic that Stephanie will then be considered NED (No Evidence of Disease). Stephanie’s doctor, of course, will follow her closely with regular scans.

TikTok Star With Lung Cancer Uses Humor to Educate

Stephanie has long been active on social media, so it stood to reason that she would seek out support on Facebook. There, she found a group called “Lung Mass and Modules” (not a cancer group) where she posted a query. Someone tagged Terri Conneran as a person who might be able to help. Stephanie and Terri soon connected and Terri, in turn introduced Stephanie to others with similar situations.

“Terri was my guardian angel. I am not sure what I would have done without her.”

Knowing how immensely helpful it is to be connected, informed, and understood by other lung cancer patients, Stephanie – in the midst of diagnosis, surgery, and treatment – took her fledgling Tik Tok account to a whole new level. At the time, as she posted quips about motherhood, her daughter, and antics of a young married woman, she had about 100 followers.

“Of those,” she shared, with a laugh, “five were friends and the other 95 were bots from the internet.” Now, her account largely focuses – with great spirit, humor, and candor – on the ins and outs of receiving a lung cancer diagnosis. With 17.5 thousand followers and growing, she is hoping to do for others what Terri did for her.

“My goal is to provide a personal picture of my cancer, so for me that’s done with humor and humility. I particularly enjoy putting some education in there for those who might not be familiar with certain tests, medications or other medical terms.”

You can follow Stephanie, the TikTok Star With Lung Cancer – we promise you will love her – @rosenylund722.

I’m using my lungs to advocate

As a member of LCFA’s Speakers Bureau, I’m advocating for research and raising awareness through the media, embodying hope and action.

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