College student researches his own cancer

February 20, 2008 9:27 AM

Josh Sommer is a student at Duke who is researching and advocating to find a cure for chordoma, a rare type of cancer that he was diagnosed with during his freshman year of college. He's not new to being an advocate-- when he was in high school, he and his mom (Dr. Simone Sommer) spoke publicly about the dangers of toxic mold, which they had both experienced firsthand.
posted by Tehanu (13 comments total)

researching and advocating to find a cure for [...] a rare type of cancer that he was diagnosed with

Benevolence is great, but it's a shame that it so often has to be motivated by self-preservation.
posted by Sys Rq at 11:48 AM on February 20, 2008

A heightening instinct for self-preservation can correspond to a newfound awareness that obliterates previous reality tunnels. Being aware that we have something to lose, that there is something to lose, can serve as a great catalyst. Not sure where the shame is in this.
posted by Roach at 12:08 PM on February 20, 2008 [2 favorites]

The shame is that people aren't already doing it.
posted by Sys Rq at 12:12 PM on February 20, 2008

Sys Rq writes "The shame is that people aren't already doing it"

You can't expect people to take any issue as if it was personal. On the contrary, the shame imho is that billions are being routed to entertain overentertained masses, while some of these resources could be used for much more urgent topics, such as finding cure for cancers , just to name one.

But identification occours only when one gets the problem, and it always happens when it is too late. Now that's the message.."what if it happens to you ? " which is , again, egotism exploited to obtain good results for everybody.
posted by elpapacito at 1:56 PM on February 20, 2008

Just to clarify, "It's a shame" is what is known as a figure of speech. I'm not suggesting anyone should actually be ashamed. I'm just saying that it's unfortunate that this is how things work.
posted by Sys Rq at 2:07 PM on February 20, 2008

Benevolence is great, but it's a shame that it so often has to be motivated by self-preservation.

I'm completely lost by this calculus. Most scientists looking for a cure for cancer are probably motivated by their careers. Does that make the cure any less valid?
posted by dhartung at 2:07 PM on February 20, 2008

Chordoma is extremely rare. Rare diseases are often orphaned when it comes to research support, but chordoma is so rare that when considering where to allocate research dollars, one has to think "Would this money possibly be better spent researching a cure for a disease that affects more people?"

For instance, it is unlikely that any specialist anywhere in the U.S. has experience with more than a handful of chordoma patients. That means that there really isn't an expert in the illness to help spearhead the effort.
posted by ikkyu2 at 2:21 PM on February 20, 2008

Benevolence is great, but it's a shame that it so often has to be motivated by self-preservation.

After reading the article that comment went from just sounding stupid and ill-informed to sounding malignantly cruel. I'm not sure who I ache for more - the parent whose son will likely die or the kid who is stoic enough to focus his intellect on cancer research when he should be playing frisbee on the quad.
posted by docpops at 3:04 PM on February 20, 2008

Andy Martin and Jeff Pinard, both mentioned in the article.
posted by Tehanu at 3:42 PM on February 20, 2008 [1 favorite]

I love the snark on Metafilter, but for the life of me I can't see a damn thing to snark about in this post. This is a twenty year old kid. He isn't passively doing nothing, or whining about poor little him -- like most people would do. The kid is getting off his ass and making things happen. The fact that it's motivated by his personal health issues are neither here nor there. If all patients were as effective as advocates as this kid is, the world would look very different.

Incidentally, Sys Rq, perhaps you could tell us all what exactly you've been doing to combat chordoma lately? Because I think it would be instructive to all of us to learn from the example of what someone who isn't motivated by self preservation has accomplished?
posted by PeterMcDermott at 5:32 PM on February 20, 2008

Sorry if I offended -- that was NOT my intention AT ALL. I'm just saying -- for the third time now -- that it's just sad that this kid, or anyone directly affected by any disease, has to fight for research.

Okay?

Okay.

Most scientists looking for a cure for cancer are probably motivated by their careers. Does that make the cure any less valid?

*blinks*

Chordoma is extremely rare. Rare diseases are often orphaned when it comes to research support, but chordoma is so rare that when considering where to allocate research dollars, one has to think "Would this money possibly be better spent researching a cure for a disease that affects more people?"

That answers my concerns. Thank you.
posted by Sys Rq at 8:45 AM on February 21, 2008

For comparison, chordoma is apparently 3% of all bone cancers, and bone cancers account for about 0.7% of all cancers in the UK, so it is really pretty rare. Chordoma is one case per 1 million population a year, breast cancer is about 1450 cases per million population per year (again, in the UK). It's sad that anyone has to fight for research money, but you can see why not much of it gets allocated to these rarer diseases when the major cancers affect so many more people.

The other problem I would guess is that with so few cases, it's going to hard for any researcher to collect enough primary chordoma material to work with, and they will be lacking the established models, cell lines, etc, that exist for research on more prevalent cancers.
posted by penguinliz at 3:22 PM on February 21, 2008

The other problem I would guess is that with so few cases, it's going to hard for any researcher to collect enough primary chordoma material to work with, and they will be lacking the established models, cell lines, etc, that exist for research on more prevalent cancers.

That's what this guy is doing, in addition to doing the benchwork in the one lab funded to research this already. He's serving as a figurehead to get people talking about what they need to do to start cell lines and gather information from the few cases that are diagnosed. He's got some researchers interested but because this is so rare, it will require coordination for them to even acquire samples to work with, let alone funding. He's also working to start a biobank to gather samples in one place.
posted by Tehanu at 3:58 PM on February 21, 2008