Thursday, March 23, 2006

The need for study of rare cancers

Part of why I started this blog was to give myself practice in writing on science topics for a general audience. As I learned professional technical writing during my graduate studies, several mentors suggested that I examine writers whose papers I enjoyed reading. My own favorite is Bob Eisenman at the Univ of Washington - his early 90s Cell papers on Myc, Mad, and Max in oncogenesis still make for engaging reading of great clarity.

So, when I started experimenting with medical journalism, I chose Amy Dockser Marcus as my role model. Based in Boston for the Wall Street Journal, Amy was awarded the 2005 Pulitzer Prize for beat reporting, stemming from a series of articles on cancer survivors.

What I love most about Amy is that she writes in both understandable and scientifically-accurate technical detail, while also bringing an emotional component to the subject matter that makes me proud to be a scientist. In 2004, Amy brought to our attention Andy Martin, a Tulane medical student diagnosed with a very rare cancer, SNUC, or sinonasal undifferentiated carcinoma. I urge you to read her chronicle of Andy's struggle to grow his own tumor cells in the laboratory under the guidance of Dr Tyler Curiel. (Tyler and his wife, Ruth Berggren, MD, deserve their own separate post for their heroic treatment of patients in New Orleans in the aftermath of Hurricane Katrina.). Following Amy's story, NPR's Robert Siegel did a lovely interview with Andy - Andy is no longer with us, but Amy also reported on Tyler's successful post-Katrina rescue of Andy's SNUC cell lines.

As with many of us, cancer has come to roost in Amy's family. Amy's Mom, Golda Dockser, had her gall bladder removed about a year ago and learned it was cancerous. You probably haven't heard much about gall bladder cancer - no green ribbons, races for the cure, etc. - simply because it afflicts just under 7 500 Americans a year, as compared with over 200 000 each for breast and prostate cancer. Amy's account of her journey with her mother, A Cry in the Dark, appeared in this past Monday's WSJ (subscription req'd). However, I'd be happy to send you a 7-day free access invitation to read it if you send me an e-mail request. Her editor, Lawrence Rout, introduced it best:

"Amy Dockser Marcus writes about a different uncomfortable truth: If you have a rare cancer, you have few places to turn. When Amy's mother was diagnosed with gallbladder cancer, Amy, who won a Pulitzer Prize for her reporting on cancer, set out to help her mother learn about the best, and latest, treatments. She quickly saw there was little to learn."

"Amy's essay lays out the frustration of having few options. But it's also a daughter's plea for help, and a reminder that behind every faceless patient is a mother, a brother, a daughter, a friend. And you can't get a truth more simple than that."



Frankly, I can't tell you how many times I've heard on NIH grant review panels, "Why are they studying X cancer since it affects so few people?" But Amy's article got me thinking about why we should study rare cancers. Certainly, government research budgets are limited to the point that we must fund the best-designed studies that have the greatest potential to help the largest number of people.

However, I'm not terribly certain that the increased funding, say, of breast cancer research, has led to advances in treatment in proportional magnitude to the much higher investment. Once the US Dept of Defense started funding breast cancer research in the early 1990s, dozens of my colleagues suddenly started working with breast cancer cell lines - not because they were interested in breast cancer, but because it was a way to get funding to maintain their laboratories and support trainees.

In fact, most advances in cancer biology and treatment come from the least likely sources. The widely heralded anticancer drug, cisplatin, credited with saving Lance Armstrong and revolutionizing the treatment of testicular cancer, was not a result of directed study of testicular cancer. Instead, cisplatin was discovered serendpitously as a by-product of testing the effects of electric fields on bacterial growth. (Cisplatin was then identified from some careful control experiments as an electrochemical product of the platinum electrodes and the amine-containing buffer to which the bacteria were exposed; in fact, cisplatin had been synthesized as early as 1844 when it was named Peyrone's chloride).

In the couple of days since Amy's essay appeared, I've been looking for evidence to support why the study of rare cancers is not only good for those people afflicted with rare malignancies, but because such study might reveal truths and targets of relevance to other more common cancers. For example, exactly why is gall bladder cancer so rare relative to breast cancer? Might study of the gall bladder tell us something about why its cells so rarely undergo transformation? How could those pathways could be turned on in more common cancers?

I'm sure that this topic has been discussed and studied, and I'm aware that the US NCI has a special office on the study of rare cancers. However, I turn to you, o faithful readers, many of whom might have experience in studying rare cancers. For those of you that do, what are your reasons for studying rare cancers? How do you write the "significance" section of your grant applications to convince reviewers of the broad significance of your work?

I can close this post no better than did Amy and our mutual friend, Dr Curiel:

"After my mother's diagnosis, I called Tyler Curiel, the head of the hematology and medical oncology program at Tulane University. I knew that Dr. Curiel's lab had done work on several rare cancers. But that day, I was searching for comfort, not answers.

"A cancer is only rare until you know someone who has it," he told me.

"As my mother undergoes another round of chemotherapy, I cling to this idea. It offers the possibility of what I was searching for all along, an avenue of hope. So consider these words an introduction to my mother, Golda Dockser. Now you know someone with gallbladder cancer."


11 Comments:

At Thu Mar 23, 07:28:00 PM EST, Anonymous Hank Barnes said...

Abel,

I apologize for not responding to your earlier comment at Orac's. I got lost in the battle.

I have responded there.

I appreciate your civility and will certainly reciprocate.

Hank Barnes

 
At Fri Mar 24, 01:41:00 AM EST, Blogger Bill Hooker said...

Odd that you should mention Eisenman; I work with Peter Hurlin, who worked with Eisenman for some time.

 
At Fri Mar 24, 01:43:00 PM EST, Anonymous Hank Barnes said...

Abel,

I appreciated your response re AZT at Orac's. I agree with some of your historical statements on the development of the drug, and disagree with a few of your intepretations, but that's ok.

I will continue the discussion at your convenience.

Hank Barnes

 
At Sat Mar 25, 08:35:00 AM EST, Blogger Abel PharmBoy said...

Bill: As I always tell my students, ours is a very small world in cancer research. I don't know Peter, but I had the pleasure of working with Eisenman for two summers at the AACR workshop on Molecular Biology in Clinical Oncology. He is not only a tremendous scientist and clear-thinking writer, but I also value his taste in microbrewed beers!

Hank: I have no dog in this whole HIV fight but I hope that y'all can move the discussion forward with Orac and Tara without all the mess that seems to detract from both viewpoints.

I'd be very interested to know if you have your own blog on the issue and/or if your pseudonym is used because you are a prominent member of the scientific community like, say, Dr Mullis. As I said, I largely left the discussion after finishing grad school in 1989 but really enjoyed a lecture we had from Dr Duesberg around that time. People younger than me really have no idea that, as you said, he was the man in virology/retrovirology and a newly-minted NAS scholar in 1987. Now, here in the next millennium, he is challenging the gene mutation/cancer folks and has Dr Vogelstein on his side re aneuploidy. I wish I had more time to read his primary work in depth and learn more about his arguments and why the rest of science is so prickly about his challenging of the dogma - isn't that what good, critical-thinking scientists are supposed to do?

 
At Sun Mar 26, 08:43:00 PM EST, Blogger Bill Hooker said...

If "Dr Duesberg" is Peter Duesberg, soi-disant AIDS contrarian, then part of the reason for the prickliness is that he persists in his stance long beyond the point at which he is "challenging dogma". His position on HIV/AIDS is analogous to that of the ID movement's position on evolution: plain, flat-out wrong. Moreover, he does continual and considerable damage to people with HIV/AIDS by his persistence -- for instance, providing cover for people like Mbeki. (I used to work on HIV replication.)

 
At Sun Mar 26, 09:10:00 PM EST, Blogger Abel PharmBoy said...

Bill, like I said, I'm pretty far removed from this area - are there good 2-3 papers you could refer me to where folks have completely dismantled Duesberg? I can certainly appreciate how the continued denial of the virus in pathogenicity puts millions of lives at risk.

 
At Mon Mar 27, 08:22:00 PM EST, Blogger Dan Dright said...

Great post. I lost my mother as well as a good friend to pancreatic cancer. I wish they were all rare, to the point of nonexistant.

Much appreciated,

Dan

 
At Wed Mar 29, 06:27:00 PM EST, Anonymous Hank Barnes said...

Abel,

I'd be very interested to know if you have your own blog on the issue and/or if your pseudonym is used because you are a prominent member of the scientific community like, say, Dr Mullis.

Yes, ill-maintained blog, still work in progress. But, No, I'm not Mullis - I'm just plain 'ole Hank:)

As I said, I largely left the discussion after finishing grad school in 1989 but really enjoyed a lecture we had from Dr Duesberg around that time.

I've attended several conferences -- cancer conferences -- where Duesberg has given outstanding talks.

People younger than me really have no idea that, as you said, he was the man in virology/retrovirology and a newly-minted NAS scholar in 1987.

Exactly right. My working hypothesis is that AIDS corrupted microbiology and large swaths of science for a few generations, but it will turn around.

Now, here in the next millennium, he is challenging the gene mutation/cancer folks and has Dr Vogelstein on his side re aneuploidy.

Yup. This is what Volgelstein has written. I quote:

"I agree with him that aneuploidy is an essential part of cancer. Dr. Duesberg continues to have a major impact on this burgeoning area of research, through his careful experimental observations as well as through his thoughtful reviews and critiques of the subject. There is no question that he is a world leader in this field of investigation"

Source: Harpers Magazine, March 2006

So, who you gonna trust, Dr. Vogelstein or some guy on the internet named Bill Hooker?:)

I wish I had more time to read his primary work in depth and learn more about his arguments and why the rest of science is so prickly about his challenging of the dogma - isn't that what good, critical-thinking scientists are supposed to do?

Agreed. The problem is that AIDS science has been distorted by fear, greed and politics. There's way too many scientists/doctors/pharmaceutical companies making $$ off AIDS and the drugs used to treat AIDS. It's hard to put the genie back into the bottle.

If Duesberg is right, all these people are out of work. Plus, major Merck/Vioxx type lawsuits, plus major political repercussions. Hence, the hostility.

Truth be told, I'm not even convinced Duesberg is completely right -- however, I believe he is much closer to the truth, than his detractors.

Abel, you are allright!

 
At Tue May 30, 03:57:00 PM EDT, Blogger Ms.PhD said...

Dumb question- could you do a little review for us on the debate about aneuploidy and cancer? I'm well aware of the HIV detractors but this tidbit about Vogelstein was something I never heard before.

thanks...

 
At Tue May 30, 04:29:00 PM EDT, Anonymous Anonymous said...

btw, why i study the cancers that i study, and why everyone should study rare cancers:

precisely the reason anita roberts was quoted in her obit notice in the washington post: because we need to understand the basics. I really believe we learn a lot about the rules by studying the exceptions. Also, because we need to understand the different niches, since cells communicate with each other... cells are social. To understand sociology, you have to go and study different groups of diverse peoples, or you don't have any perspective. The same thing applies to biology.

was doing some reading this weekend and noticed that in ayurveda, they believe that cancer comes from a single cell being lonely. i thought that was an interesting suggestion, especially in light of what we know about niches.

 
At Tue Jul 25, 04:57:00 PM EDT, Anonymous Lynne Dahlborg said...

I was diagnosed with gall bladder cancer about two months ago, and, like Amy, I have been searching for information and for connection to others dealing with this rare cancer. It's true that the cancer is only "rare" until we know someone with it, as I am painfully discovering. Thanks for your blog on this!

 

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