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Exceptional Patients and Radical Cancer Remissions

My colleague and Radical Remission author, Kelly A. Turner, PhD, recently told me that she’s increasing her efforts to encourage more submissions of remarkable cancer recovery stories to her Radical Remission Project website.

(Disclosure: I am on the Radical Remission Project advisory board and am briefly featured in Dr. Turner’s book.)

Turner’s New York Times bestseller has elicited scores of healing stories from around the world, and garnered considerable attention. She intends to continue the momentum by collecting as many high quality case reports as possible.

I was relieved when Turner went with the title Radical Remission over the oft-cited ‘spontaneous remission’ because, as I wrote here, spontaneous remission is a myth.

There are many remarkable cancer healing stories that go undocumented and unreported. No repository currently exists to capture exceptional patient cases, making Turner’s project a noteworthy collection of potentially significant value.

Open access to the healing stories at RadicalRemission.com, which forms the basis of cancer-specific content at the more robust and retooled site, coming mid-December, allows patients and their loved ones to gain a better understanding into what is possible. It is important to note that while this will bring hope and awareness to many, it is, alas, unlikely that everyone will achieve similar results. After all, these are anecdotal outlier cases, not unlike mine.

But as we move into an era of personalized cancer care, and smaller groups of patients are studied, it is more important than ever to hear from patients who have experienced a remarkable response from conventional or nonconventional treatment approaches.

There is an emerging trend placing genuine scientific value on smaller clinical trials targeted to subsets of cancer types. I theorize that in the years ahead, the significance of individual case reports on exceptional patients—long thought to be weak anecdotal evidence and rarely accepted for publication in leading medical journals—will ultimately inform clinical care.  If you or someone you know has experienced a remarkable outcome from conventional cancer care, a combination of complementary therapies and conventional care, or standalone alternative methods, consider sharing the story on RadicalRemission.com.

In order to ensure the quality and high level of clinical reporting and data capture surrounding your case, I strongly urge you to consider following these additional options, as applicable, with the aim of capturing this important information in the medical literature and/or for further scientific investigation by the NIH’s National Cancer Institute (NCI).

Individual Case Report

Ask your oncologist to author a case report capturing your clinical course.  This can be done with a single author or multiple authors, which will allow for deeper conversation within the discussion section of the paper itself.  If your oncologist does not have experience writing case reports, that’s okay, there are plenty of quality resources available to help guide your physician in its creation.

A published case report gets your peer-reviewed case into the medical literature. This is important because, according to Turner, many stories of radical remission go unreported.

NCI Best Case Series

For several years, NCI’s Office of Cancer Complementary and Alternative Medicine (OCCAM) has collected case reports from physicians who document remarkable outcomes from multiple patients with similar conditions treated in their clinic. If you are part of a group of exceptional responders within a specific disease type, encourage your doctor to participate in NCI’s Best Case Series. The program criteria can be found here.

NCI Exceptional Responders Initiative

NCI created this initiative one year ago to— in essence—retrospectively review the clinical history and tissue and blood specimens of exceptional patients to attempt to ascertain why those patients fared better than most others with their treatment plan. I’ve paraphrased the goals of NCI’s Exceptional Responders Initiative:

  • To identify molecular indicators in malignant tissues from patients who were exceptional responders.
  • To explore associations between the identified molecular indicators and the assumed mechanism of action of the treatment received.
  • To test the feasibility of identifying “exceptional responders”, obtaining the relevant tumor and normal tissue and clinical data, and performing whole exome sequencing on these samples.

The opportunities covered in this post comprise the most practical and necessary paths to move us from anecdotal self-reported patient stories of exceptional recovery and radical remission to a higher level recording of case reports and, when applicable, deeper review by the National Cancer Institute.

The goal is a repository of high quality case reports that are easily retrievable and, through open-access that can be mined to inform future clinical trials which could result in new treatment approaches.