ESUN

Building Bridges

By Bruce Shriver, PhD
Editor-in-Chief, ESUN

There are several important issues to discuss about the content and form of this and future issues of ESUN. First, I want to thank you for the scores of notes that we received regarding the inaugural issue of ESUN, particularly for the praise, encouragement, and useful suggestions. ESUN is distributed as an "electronic" newsletter. However, a number of readers wanted to print out individual articles to use offline, but they didn’t want to print the entire content. This is a reasonable request, given the overall length of ESUN. To make it easy for a reader to do this, beginning with this issue, we’ve made each article a separate webpage.

Second, I am delighted to announce the appointment of two distinguished physicians to our Medical Advisory and Editorial Board: Dr. R. Lor Randall, Director, Sarcoma Services at the University of Utah’s Huntsman Cancer Institute and Primary Children's Medical Center and Dr. Mark Gebhardt, who is at Harvard Medical School and is Chief of Orthopaedic Surgery at Beth Israel Deaconess Medical Center.

The third issue concerns "building bridges" between various communities. Sarcomas are a group of rare cancers that include bone sarcomas (such as osteosarcomas, chondrosarcomas and Ewing’s sarcoma of bone) and soft tissue sarcomas (such as malignant fibrous histiocytoma (MFH), liposarcoma, leiomyosarcoma (LMS), synovial sarcoma, malignant peripheral nerve sheath tumor (MPNST), rhabdomyosarcoma, fibrosarcoma, (extraosseous or extraskeletal) Ewing’s sarcoma (EWS) and primitive neuroectodermal tumors (PNET), angiosarcoma (a.k.a., hemangiosarcoma), epithelioid sarcoma, alveolar soft part sarcoma (ASPS) and malignant hemangiopericytoma (HPC). Some of these sarcomas can develop both in bone as well as in soft tissue, e.g., Ewing’s sarcoma and fibrosarcoma.

In their recently published article, Soft Tissue Sarcomas,¹ Drs. Cormier and Pollock present many details about a variety of issues related to soft tissue sarcomas. At one point they state, "Soft tissue sarcomas are a heterogeneous group of rare tumors. The vast majority of the tumors are sporadic. The management of such diverse tumors is complex and depends on the stage, site, and histologic characteristics of the tumor. The most common site of metastasis is the lungs, and metastasis generally occurs within two to three years after the completion of therapy." I hope that the articles and the other material that appear in ESUN will help build bridges among the various sarcoma communities (i.e., the patients, caregivers, and medical teams that are dealing with a specific sarcoma) so that each community can benefit from the experiences of the other communities.

The second bridge is a different type of bridge. Over the last two years, I have spent a lot of time on the NCI website and other websites that have "patient" and "health professional" subwebs. I was attempting to locate materials that could help me understand treatment plans and options, protocols, clinical trials, recent and historical R&D related to my daughter's Ewing's sarcoma. I did similar research for my prostate cancer. On more than one occasion I wished that there were some "bridge articles" that spanned the material available on the "patient" and "health professional" subwebs of such websites.

It is challenging to write an article that appeals to both the "layperson" and the "medical professional." There is a gap that can be difficult to bridge. I was editor-in-chief of two technical periodicals in my field for eight years. The readerships of both periodicals consisted of practitioners and researchers. Both periodicals contained articles specifically targeted at practitioners and articles specifically targeted at researchers. However, I wanted to publish some "bridge" articles that would appeal to and be useful to both groups. I commissioned a number of "tutorial" articles and a number of "survey" articles to do this. I worked very closely with the authors of these articles to attempt to bridge the gap between the two audiences. The paradigm that eventually emerged was to have the body of the article focused on the practitioner, augmented with a number of sidebars going into greater depth for the researcher. This approach worked well and I began using it with authors of selected non-tutorial and non-survey articles.

Future issues of ESUN will have such "bridge" articles on several of the sarcomas mentioned above. These "tutorials" will be written by (or at least co-authored by) a physician. Here are the author guidelines for the articles. The tutorial will describe the disease, where and when it occurs, the treatment options, its normal progression, expected outcomes, etc. It should be directed at patients and caregivers, augmented with a number of sidebars going into greater depth for the medical professional. Each article will include (tested) hyperlinks that help the reader, as such hyperlinks are in the spirit of an electronic newsletter. We currently have authors for rhabdomyosarcoma, leiomyosarcoma, Ewing’s sarcoma, osteosarcoma, and synovial sarcoma tutorials. The first of these tutorials will be in our next issue.

Finally, I'd like to mention that the current issue of ESUN has an immunotherapy emphasis (vaccine therapy and antibody therapy). There are a number of articles on immunotherapy and related clinical trials cited in the Q and A on Immunotherapy. There are additional immunotherapy references in the Clinical Trial News column, in the Odds and Ends column, and a number of immunotherapy resources are discussed in the Research Corner column.

Please send me your comments and reactions to our efforts.

Bruce Shriver