I sat in a row beside metastatic breast cancer patients and advocates, and watched cutting edge results being presented at the San Antonio Breast Cancer Symposium last week. They were taking it all in, trying to understand everything from the details of the science to the details of the clinical trials. This particular session wasn’t hard to interpret. You certainly didn’t need an advanced degree to see that there was no difference between the survival curves of the investigational drugs that were being described versus the standard of care. Not only was there no change in these curves, there’s been no change in the mortality rate for people with metastatic breast cancer for decades.
DECADES of awareness, and research, of publications and seminars, of symposiums and conferences. Decades of career advancement and pats on the back. Decades of Champaign bottles uncorked at thesis defenses, and dinners out to celebrate successful grant applications. Decades of reviews, and study groups. Decades that have resulted in no change in mortality? How is that even possible?
In non-cancer lives, this is more than a generation of effort that has yielded no change in the needle. In metastatic breast cancer lives, where the average life span is ~ 3 years, this is over 10 generations of lives lost.
I know what it’s like to track your own mortality along a Kaplan-Meier curve. I watched as my friends saw in dual screen, that they are still looking down that steep curve with nothing to intervene as they are forced down that slope. My heart was broken into tiny little pieces, for them, and for all of us. If we haven’t been able to figure out how to properly treat a population of people who comprise a large fraction of the cancer gestalt by now, then when? That is one of many outstanding questions that I hear from my many friends in the MBC community. When.
People with MBC have been told for decades that they just need to wait a little longer, that research is slow, but that things are changing. As someone who walks the line between research and advocacy, I can see crystal clear, many of the factors that are impeding progress. We have an infrastructure that promotes career development over collaborative scientific endeavors. My experiences are in the space of academic medicine, so I can’t speak to anything related to industry, but from my side of the bench, I have been deeply disturbed by the way we publish, to the way we promote junior investigators, all the way through tenure. I was a link in this chain for 15 years before I decided to jump ship.
I have seen postdocs in the same lab not aware of each others research because they are so protective over their impending publications, that they don’t want their colleagues to scoop them. I have seen data sculpted into the best possible papers, but not the best possible science. I have seen people, myself included, chose topics to write grants for because they are sexy and have a better shot of getting funded rather then write for what is truly in their hearts. I have pat my friends on the back for their papers, for their grants, for their great successes, all the while, the people who are they greatest sake holders are dying by the droves.
Until every researcher, every study group, every granting agency understands the sense of urgency that patients feel about their research, the status quo will reign. I would love if we could sober up, take a look at the reality of our collective ineffectiveness and chart a swift course toward some impactful research. I know that the work I’m involved with is tacking in the right direction, and I hope very much to help generate data ASAP. But I will hold off on any hyperbole, on any pats on any backs and on easing up on my sense of urgency until there is something to actually celebrate.
I know little about breast cancer but agree with everything you wrote.ReplyDelete
All cancers are treacherous, though some cancer groups seem ahead of the curve and are having therapeutic victories.
Think of Immunotherapies for Stage IV Glioblastoma, Melanoma, Multiple Myeloma and Leukemia patients. Aren't they seeing long lasting responses in patients that should not be alive? Why?
Do these cancers groups have better leadership? Are they more organized? Smarter scientists willing to fight dogma and think outside the box? Do they have higher participation in clinical trial research that allow the advancement in the science and acceleration of approval from the FDA for new therapies? Think about the very high trial participation rate among pediatric cancers like childhood leukemia. Decades ago it was a death sentence. Today they have a high cure rate. What is the clinical trial participation rate for breast cancer? Is it low compared to their peers?
The point is that breast cancer should look at these cancer groups which are having victories and model them.
Please do some research on breast cancer, and specifically, metastatic breast cancer. This response is ignorant.Delete
Ignorant? Your response added no value to the comment or the blog. You are the ignorant one.Delete
Corrie, Thank you for posting your viewpoint of the research world since you have been a participant. And, thanks to Marie's Weekly Round-Up, or I probably would have never found your blog. As you know, breast cancer is a complicated disease--more complicated than most people realize, I think. While reading your words I thought of the Susan G. Komen organization. Some metastatic patients' blogs describe how disgusted they are with them not doing enough for stage IV research. The Komen website does describe their effort behind helping new researchers enter this extremely high cost world of breast cancer research. It seems to me that Komen does this, of course to help young researchers, but also to give the appearance to the public that the organization is having successes through their fundraising efforts. Stage IV research takes an enormous amount of funding and time. If Komen's donations were funding large research facilities, any progress made would be slow and infrequent. Results that small-scale research facilities report are faster because the research is short-term and may be lifestyle type findings not about the actual cancer cells. Any reports from research give the appearance that much is being done to advance the understanding of the disease even if it isn't. People want answers now. In the world of breast cancer, this is no easy task especially if, as you said, individual researchers and labs are not interested in sharing their work with one another. What a complicated mess--the disease and the research.ReplyDelete