Medical students are told that doctors should not search for outlandish explanations when more common ailments might be more appropriate.  This makes perfect sense: just by the numbers, more common illnesses are, well, more common.

“When you hear hoofbeats, think of horses, not zebras.”

— Dr. Theodore Woodward

A phrase adopted by the S/LCCC community is “rare, but there.”  Women diagnosed with Neuroendocrine Small or Large Cell Cervical Cancer represent that highly unusual case that doctors don’t expect to see.  In practice, they are even more rare than zebras; they’re the zebras with teal instead of black stripes.

What makes these zebras unique?

There are certain assumptions about related types of cancer that just don’t apply to Small or Large Cell Cervical Cancer.

  • The vast majority of cervical cancers have a proven cause: Human Papilloma Virus (HPV), the most common sexually transmitted infection present in about 79 million Americans, according to the Centers for Disease Control and Prevention.  There is no proven link between HPV and Small or Large Cell Cervical Cancer.
  • There is now a vaccine to prevent HPV infection, which in turn can reduce the incidences of the more common cervical cancers.  However, because we don’t know what causes the high grade neuroendocrine cervical cancers, S/LCCC is not preventable.
  • For 98% of cervical cancers, routine pap smears and HPV screening are reliable tools for detection. and routine screening boosts survivorship among women affected by it.  Unfortunately these tests often do not detect S/LCCC, and S/LCCC may not be found until after it produces symptoms.
  • The other types of cervical cancer have a precancerous stage, and conventional wisdom is that cervical cancer takes years to develop and grows slowly. However, S/LCCC does not have a precancerous stage; once it is present, it behaves very aggressively and spreads rapidly.  There is no such thing as “catching it early.”

Even in the company of neuroendocrine tumor (NET) patients, those with a S/LCCC diagnosis are extremely rare.

  • Well-differentiated or low-grade NETs are often Carcinoids, which can be managed as a chronic disease.  S/LCCC has two only two paths: either it is eradicated, or it is fatal.
  •  The majority of high-grade neuroendocrine tumors, still quite rare, are found in the lungs, pancreas and gastrointestinal tract.  S/LCCC is very unusual, even when viewed in the context of other rare cancers. 

Why learn about teal-striped zebras?

If you are a caregiver or supporter of someone diagnosed with S/LCCC, knowing some of the basics about the disease might help you empathize with your loved one. It’s a very serious disease, so don’t shrug off their fears or assume they’re just being negative.  A general understanding of how your teal zebra is different from someone you knew who beat cervical cancer 15 years ago, or from someone you read about who manages their Carcinoid cancer with medications, might help you avoid a well-meaning faux pas.  (Helpful hints from a patient: Don’t say things like “at least you caught it early,” or tell me success stories of people with illnesses that are nothing like mine.)

For women diagnosed with S/LCCC, embrace your uniqueness.  No one wants to be special in this way, but you are.  Embrace your teal stripes like warpaint, and gear up for battle! Thankfully there are others who have walked in your path, and they can share insights from their experience that can help you cope with the physical and emotional impacts of the disease.

 

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