Confronting the ‘Big C’ After My Daughter’s LEMS Diagnosis

The first statistic I heard after our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at age 14 was that 50% to 60% of cases are connected to another underlying disease, particularly small cell lung cancer.

This was a sobering statistic. It felt like the bad news just kept coming. Not only was my daughter losing muscle function, but we also had the added worry of hidden cancer somewhere in her body.

Surprisingly, this scary statistic didn’t shake me as much as I thought it would. That may sound odd, but we’d been living in such a heightened sense of dread that a potential cancer diagnosis didn’t scare me. Before her LEMS diagnosis, Grace went through extensive medical screening and testing. She had CT scans and MRIs. Bloodwork was done multiple times by various doctors grasping at straws in search of an answer. Genetic testing took months.

Leukemia had been whispered. Limb-girdle muscular dystrophy was expected. To say our expectations were low in regards to her prognosis is putting it mildly. However, I strongly believed that doctors would’ve found any underlying cancer throughout all of their testing had it been lurking somewhere in Grace’s body.

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So when her neuromuscular neurologist brought in doctors from the Mayo Clinic to help diagnose her, and they determined she had LEMS, I was somewhat relieved. Yes, LEMS is a tough disease to battle, but we found hope in her diagnosis. We were relieved to know there was medication that could help manage some of her symptoms. The doctor gave us treatment options immediately after her diagnosis, which boosted our hopes as well.

When we were presented with the cancer statistic, we of course wanted to fast-track Grace’s cancer screening. Her doctor ordered a full-body PET scan. Once that came back clear, I felt confident she was cancer-free. Since Grace developed LEMS at such a young age, doctors explained that it had most likely been caused by an autoimmune response rather than a hidden cancer.

I know this is not the case for everyone. Many people dealing with LEMS have the added burden of a cancer diagnosis.

We continue to stay vigilant in our cancer screenings. As much as I wanted to cross the C-word off our list of things to worry about, we knew we had to face it head-on. For us, that meant cancer screenings every year for at least three years after Grace’s LEMS diagnosis. It means taking her to a dermatologist to check moles and other skin conditions as they come up. Mostly, it means being proactive in all areas of her health so that we don’t miss anything.

Although the added burden of cancer is difficult to face, those with LEMS must stay vigilant with annual screenings. Take precautions to alleviate that risk. Make healthy lifestyle choices to lower your chance of getting cancer. Seek medical attention at the first whisper that something is off.

Note: Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia syndrome.