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About us

The SSG was formed in 1979 by physicians and scientists from the Scandinavian countries with a primary interest in tumors of connective tissues.

The goal of the SSG is to advance the care of patients with sarcoma and to increase knowledge of all aspects of the biology of these tumors, including basic and clinical research. The SSG has developed treatment protocols for different sarcoma types and participates in international clinical trials.

At this SSG web-site you can access treatment protocols, find information about previous and future SSG meetings with links to SSG publications.

SSG secretary: Eva-Mari Olofsson
SSG mail address: Eva-Mari.Olofsson@med.lu.se

Treatment protocols and recommendations – Sarcoma

SSG guidelines for referral of patients with soft tissue tumors of the extremities and trunk wall

Soft tissue sarcomas are rare malignancies with a clinical presentation that is often not that what is expected from a malignant tumor. Patients with soft tissue sarcomas Typically have no symptoms from the tumor. Pain, tenderness or loss of function is often not present and the person is feeling perfectly healthy. The only sign of a possibly malignant tumor is the mere existence of a lump accidentally noted by the patient. This is why these tumors are often misinterpreted as benign lesions and neglected by patients as well as physicians. Most soft tissue sarcomas are, however, highly malignant and around 1/3 of the patients are killed by metastatic disease.

Due to the fact that soft tissue sarcomas are rare, knowledge about these tumors is generally limited within the health care organization. Therefore, for optimal care, diagnosis and treatment should be performed at special centres with multidisciplinary expertise in these tumors.

The most important aspect of the guidelines for referral is to spread awareness of the existence of soft tissue sarcomas and that a ”clinically benign” lump may well be highly malignant. However, because most soft tissue lumps are benign, there have to be guidelines for when to suspect a soft tissue sarcoma. Epidemiologic data for benign and malignant soft tissue tumors show that the risk for malignancy increases with size and deep location. Apart from these simple characteristics, there are no specific features that can be used to estimate the probability of a malignant tumor.

Hence, we recommend that patients presenting with a tumor or lump with the following features should be referred to a sarcoma center as soon as possible and before any surgical intervention:
All tumors >5 cm
All deep tumors, irrespective of size

SSGVII:4
Centralized Registration of Sarcoma Patients in Scandinavia. Ongoing inclusion since 1986.

Trials sponsored by Scandinavian Sarcoma Group (SSG)

SSG XXII - THREE VERSUS FIVE YEARS OF ADJUVANT IMATINIB AS TREATMENT OF PATIENTS WITH OPERABLE GIST WITH
A HIGH RISK FOR RECURRENCE.
A randomised phase III multicenter study.

SSG XXI – “PAGIST”
A Scandinavian Sarcoma Group treatment protocol for adult patients with advanced gastrointestinal stromal tumors refractory to imatinib and sunitinib. A non-comparative phase II multicenter study. Closed for inclusion October 2014. Follow-up is ongoing. Further instructions.
SSG XXI study protocol, latest CRF version and corresponding instructions can be downloaded from “Members only”.

SSG XX
A Scandinavian Sarcoma Group treatment protocol for adult patients with non-metastatic high-risk soft tissue sarcoma
of the extremities and trunk wall. Closed for inclusion June 2014. Follow-up is ongoing. Further instructions.
SSG XX study protocol, latest CRF version and corresponding instructions can be downloaded from “Members only”.

SSG XVIII – A collaboration between the Scandinavian Sarcoma Group and the Sarcoma Group of the AIO, Germany
Short (12 months) versus long (36 months) adjuvant treatment with the tyrosine kinase inhibitor imatinib mesylate of operable gastrointestinal stromal tumors with a high risk for recurrence: A randomized phase III study. Closed for inclusion 2008. Follow-up is ongoing.

International collaborative trials

SSG XXIII – ALT-GIST CLINICAL STUDY (AG1013GST / CTC 0122 / EORTC 1321-STBSG)
A collaboration between the Australasian Gastro-Intestinal Trials Group (AGITG), the European Organisation for Research and Treatment of Cancer (EORTC) and the Scandinavian Sarcoma Group (SSG).

rEECur (Euro Ewing Consortium)
An international randomized controlled trial of chemotherapy for the treatment of recurrent and primary refractory Ewing sarcoma. For more information regarding the protocol, click here.

EURELOS
The Scandinavian Sarcoma Group participates with the Cooperative OsteoSarkom Studiengruppe (COSS) and the Italian Sarcoma Group (ISG) in the EUropean RELapsed OSteosarcoma Registry.
The aim of the registry is to collect prospective information on patients with relapsed osteosarcoma. The participating groups will supply the registry with information on demographic factors and tumor related variables as well as information on both first-line and relapse treatment. These data will be evaluated for possible correlation with outcome.

EURAMOS I
A randomized trial of the European and American Osteosarcoma Study Group (EOI, GPOH, NCRI, SSG). A randomized trial of the European and American Osteosarcoma Study Group to optimize treatment strategies for resectable osteosarcoma based on histological response to pre-operative chemotherapy. Patients registered between 2005-2011. Registration closed, ongoing follow up. CRFs and corresponding instructions can be downloaded from “Members only”. Details regarding this trial may be found at www.euramos.org.

Euroboss1
A European treatment protocol for bone sarcoma in patients older than 40 years.
Closed for inclusion December 31, 2014. Follow-up is ongoing and data will be collected for 2 more years. Before more response and toxicity data are available the treatment arm for good histological reponders should also be applied for poor responders. In principle 9 cycles (in combinations of doxorubicin, cisplatin, ifosfamide) as in the protocol, but no addition of HD-MTX to poor responders. Registration closed, ongoing follow up.

Recommendations

SSG XXIV
Recommendations for Radiotherapy in Bone- and Soft Tissue Sarcoma.

Analysis of Genetic Changes in Musculoskeletal Tumors 4th edition, 2012

SSG XVII Version 2
Recommendations for the Diagnosis and Treatment of Intraabdominal, Retroperitoneal, and Uterine Sarcoma 2008. See ESMO guidelines.

SSG XIX
Recommendations for treatment of metastatic soft tissue sarcomas in adult patients 2004.
See ESMO guidelines.

ESMO guidelines for bone sarcomas, soft tissue and visceral sarcoma, and GIST updated 2014.

Guidelines for basic MRI examination of suspected bone and soft tissue tumors

Treatment summary for patients and primary care doctors
Norwegian version
Swedish version

Latest updated February, 2017
EMO/FM