August 2009
Odds and Ends
An ESUN Resource
Early Referral Before Biopsy of Soft Tissue Masses Leads to Better Outcome
A new study confirms what many sarcoma patients already know: Patients with a suspected benign soft tissue tumor who get an early referral to a cancer specialist have better outcomes in the event the tumor proves to be a malignant sarcoma. These are the findings of investigators at the University of Alabama at Birmingham (UAB) published in the summer issue of the Journal of Surgical Orthopaedic Advances.
The UAB team, led by Herrick Siegel, M.D., associate professor of orthopaedic surgery, said that men aged 20-40 with a soft tissue mass discovered following a traumatic injury incurred at work or during recreational activities are more likely to have that tumor removed during an unplanned procedure without consultation or participation from specialists trained in cancer treatment. Sarcoma may commonly be misdiagnosed in this age group as hematomas, muscle tears, sprains, ganglion cysts and lipomas.
Such patients who undergo an unplanned excision are at increased risk for developing complications at the site of the tumor and may require additional treatment such as radiation and chemotherapy, which may have been avoided with early referral to a cancer specialist before a biopsy is done.
"It is vital that patients with a soft tissue mass be seen by a multidisciplinary team consisting of radiologists, pathologists and surgeons trained in sarcoma management," said Siegel, lead author of the study. "Tumor excision by a non-oncologic surgeon may leave minute parts of the tumor behind, allowing it to grow back."
Siegel says that outcomes for sarcoma patients treated at cancer centers are much better than for those treated outside of a cancer center. There is less chance that the cancer will return, and less likelihood that major reconstructive surgery, or even amputation of a limb, would be necessary. "Early referral to a sarcoma specialist can avoid many of the complications that occur when excisions are performed at non-oncologic centers," he says. "The key is having a suspect soft tissue mass biopsied at a cancer center to determine if it is malignant or not."
Benefits of Limb-Sparing Surgery Questioned
Limb-sparing surgery for sarcoma matches amputation for disease control, but a higher complication rate may lead to poorer quality of life, authors of a review concluded. Most studies have shown smaller-than-expected improvement in disability with limb salvage, and data on cost of treatment have shown no clear advantages in favor of limb-sparing surgery, according to an article published online in Cancer. "The viewpoint of the patient, with respect to functional outcome and quality of life, has primacy," Ronald Barr, MD, of McMaster University in Hamilton, Ontario, said in an interview. "All too often, these assessments are made by the individual engaged in the healthcare of the folks undergoing these procedures." Read more here.
A note from Frank Burroughs of the Abigail Alliance
The ACCESS Act will be reintroduced this summer in the U.S. Congress, as we continue to work to add more cosponsors for the bill. Our website has been recently significantly updated, including a link button at the top of the www.abigail-alliance.org homepage that makes it easy to voice your support on Capitol Hill for the ACCESS Act. HELP support the ACCESS Act (S.3046 H.R.6270)! WRITE your U.S. Representative and Senators.
A Note from Bruce Shriver of the Team Sarcoma Initiative
Volunteers are already working to coordinate and communicate next year's global Team Sarcoma Initiative, which will occur during the week of July 17-25, 2010. Committed and caring people around the world have made the Team Sarcoma Initiative more successful each year. Our goal in 2010 is to have 20,000 people involved in a life-changing Initiative. Families are invited to plan events in their communities to increase awareness or raise funds for sarcoma research. Advocacy groups and cancer centers are invited to plan events that will strengthen their ties with patients and increase their reach. Whether enjoying a backyard barbeque, an educational seminar, or a thrilling race: Together, we can make a difference! Visit the Team Sarcoma page to learn more, or contact Bruce.
Australian Sarcoma Kindred Study
The Rainbows for Kate Australian Sarcoma Kindred (ASK) Study is currently funded philanthropically by the Rainbows for Kate Foundation, in memory of Kate Boyson who lost her fight with Ewing’s sarcoma in October 2007. The Rainbows for Kate ASK Study is being lead by A/Prof David Thomas at the Peter MacCallum Cancer Centre in Melbourne and has 4 major aims:
- Establishment of a database consisting of biospecimens and epidemiological data to be used as a clinical and research resource. This database will be called the Australian Sarcoma Kindred Registry.
- Utilisation of the Australian Sarcoma Kindred Registry to develop clinically useful, population−based criteria for stratifying genetic or hereditary risk for adult−onset sarcoma.
- Undertaking of a population based survey on community attitudes to genetic research.
- Mapping p53 pathway mutations/variants in patients with adult−onset sarcoma, focusing on the CHK2, TP53 and HDM2 genes.
Whites More Likely to Get Ewing’s Sarcoma
Scientists have documented that the rare bone and soft tissue cancer Ewing's sarcoma disproportionately strikes white people. What's more, among whites who have the disease, males are more likely to die from it than females, according to a study published June 22 in Cancer.
Led by Dr. Sean Scully of the University of Miami, the researchers analyzed more data spanning more than 30 years from the National Cancer Institute's Surveillance, Epidemiology and End Results Program, the largest source for cancer statistics in the United States.
They found that whites had the highest risk of developing Ewing's sarcoma (155 cases per 100,000), followed by Asians/Pacific Islanders (82 cases per 100,000) and African Americans (17 cases per 100,000). Incidence of the disease in whites has increased over the past three decades, the researchers also noted.
Ewing's tumors often show up in childhood or early adulthood, occurring anywhere in the body. Common sites are in the pelvis, chest and long bones of the legs and arms. Symptoms include noticeable lumps under the skin and bone pain.
More work needs to be done to determine why whites have higher rates of Ewing's sarcoma, the researchers said. Scully said he hopes the study will begin to shed light on the racial and gender disparities, perhaps leading to better therapies in the future.
Life with Cancer
Eric Cohen, RN, BSN, OCN
Program Manager, Patient and Family Education
Our 20 year old program called Life with Cancer, is a community supported non-profit, for anyone affected by a cancer diagnosis. We are Oncology Certified Nurses (OCN) and Oncology Certified Counselors (OSW-C). We run over 40 different programs every month, including a Sarcoma group, education classes, individual and family counseling and individual treatment plan consultations with our nurses. Everything we do is completely free of charge and it doesn’t matter where you receive your treatment. A sarcoma patient, family member or friend, might come to one program or several programs depending on their interests. For instance, the sarcoma support group, and also one of our expressive arts classes, a nutrition class, etc.
Cancer Hope Network
From their website, "Cancer Hope Network is a not-for-profit organization that provides free and confidential one-on-one support to cancer patients and their families. We provide that support by matching cancer patients and/or family members with trained volunteers who have themselves undergone and recovered from a similar cancer experience. Through this matching process, we strive to provide support and hope, to help patients and family members look beyond the diagnosis, cope with treatment, and start living life to its fullest once again."
Pathology of soft-tissue tumors: Daily diagnosis, molecular cytogenetics and experimental approach
Hiroshi Iwasaki, Kazuki Nabeshima, Jun Nishio, Shiro Jimi, Mikiko Aoki, Kaori Koga, Makoto Hamasaki, Hiroyuki Hayashi and Ai Mogi
This article is well worth reading. The abstract states, "This article reviews problems in diagnostic pathology and molecular cytogenetics of soft-tissue tumors. Also discussed are the origin of soft-tissue sarcomas and the molecular basis of effective target therapy for sarcomas. Molecular cytogenetic analysis of tumor-specific chromosomal translocations and associated fusion gene tran¬scripts offers a useful adjunct to the diagnosis of soft-tissue tumors, but recent studies have indicated a growing number of fusion gene variations in each tumor type. In pleomorphic sarcoma/malignant fibrous histiocytoma, the alternative lengthening of telomeres (ALT) mechanism may result in formation of anaphase bridges and marked nuclear pleomorphism. The histogenesis of soft-tissue sarcomas has been a matter of controversy. In the present experimental model using s.c. injection of 3-methylcholanthrene in C57BL/6 mice pretreated with bone marrow-transplantation from green fluorescent protein (GFP)-positive green mice, the bone marrow-derived mesenchymal stem cells as well as the tissue-resident mesenchymal cells in the peripheral soft tissues are possible originators of sarcomagenesis. Little is known about a molecular basis of target therapy for sarcomas. Platelet-derived growth factor-BB (PDGF-BB) enhances the invasive activity of malignant peripheral nerve sheath tumor (MPNST) cells through platelet-derived growth factor receptor (PDGFR) phosphorylation, whereas imatinib mesylate inhibited such activity, suggesting that targeting PDGFR-b may result in the establishment of novel treatment for MPNST. In addition, emmprin is a transmembrane glycoprotein on tumor cells that stimulates peritumoral fibroblasts to produce matrix metalloproteinases (MMP), playing a crucial role in tumor progression, invasion and metastasis. The MMP upregulation mechanism mediated by tumor-associated emmprin may be a potentially useful target in anti-tumor invasion therapy for sarcomas."
V6N4 ESUN Copyright © 2009 Liddy Shriver Sarcoma Initiative.

