Hoofbeats

The DVCC has adopted a zebra through the Philadelphia Zoo's adopt-an-animal program. The zoo is happy to offer its support of this effort which our support group calls "Hoofbeats" since this rare cancer has the zebra as its icon. Since our mission includes creating awareness of these diseases in both the medical and patient communities, the consensus was there was no better or interesting way to make a statement. The Zoo is the first zoo in the USA to join this awareness campaign.

In the medical community, the term "zebra" is universally understood as a reference to an orphan, or rare disease or condition, Carcinoid and other NETs being one of them. Physicians are taught the core tenet of medical diagnosis - to assume that the simplest explanation is usually the best, i.e., it is generally more productive to look for common rather than exotic causes for disease, hence the phrase   "If you hear hoofbeats, think horses, not zebras."
Hence, the zebra is the icon for carcinoid and all rare cancers. 

The Cinderella Story for NET Patients

 

 

On our Home Page we posted the Yellow Corvette parable which has been told countless times by Dr. Eugene Woltering, a NET specialist at the Ochsner Medical Center in Kenner, Louisiana, just outside of New Orleans.

Here is another parable from Dr. Woltering.

One of the critical approaches to NETS is what I call the “Cinderella principle”. Everybody knows the story of the downtrodden Cinderella who has been given everything she needs to be the belle of the ball for one magical evening BUTTTTTTTT her fairy godmother has warned her to watch the clock on the wall carefully and to make sure she leaves the ball before midnight. If she doesn’t leave before midnight her lovely evening will go “poof” and her handsome prince will be left with nothing but a bag of rags and a couple of big hairy rats.

NETS therapy is much like Cinderella’s story—the docs who treat this disease can’t make Cinderella into a real princess—they can just work with the fairy godmother to “buy her time” to dance with the handsome prince. Everything we do in NET’s therapy is aimed at achieving either tumor stability or cytoreduction of tumor bulk.  Every time we put someone on a somatostatin analog we are hoping to put our fingers on the hands of the clock-- preventing their forward progress. In contrast, the concept of surgical or other types of cytoreduction is to actually move the hands of the clock backwards to an earlier time--thus allowing Cinderella to dance with her handsome prince for a longer time.

The “stealthy doc who sneaks into the ballroom and messes with the clock” is not able to steal the clock off the wall or change the laws of physics---time and tumors will still progress at some point—all they can do is allow the princess to dance and enjoy life for a longer period of time. THERAPY ATTEMPTS TO DO THE SAME THING—WE CAN’T CURE MANY FOLKS—BUT WITH THE CHOICE OF THE PROPER THERAPIES DONE IN THE PROPER SEQUENCES WE CAN MAKE THE DANCE GO ON FOR LONG PERIODS OF TIME.

The take home message to this story is see a NETS specialist—go after the best therapy available to you and enjoy life!