The Scandinavian Sarcoma Group Central Register: 6,000 patients after 25 years of monitoring of referral and treatment of extremity and trunk wall soft-tissue sarcoma

Figures & data

Table 1. Total numbers (percentages) of patients registered in 5 time periods since the start of the Scandinavian Sarcoma Group Central Register, which includes population data from Norway, Finland, and Sweden

Sarcoma	1987–1991	1992–1996	1997–2001	2002–2006	2007–2011	Total
center	n = 1,045	n = 1,077	n = 1,190	n = 1,287	n = 1,238	n = 5,837
Oslo	214 (21)	228 (21)	268 (23)	324 (25)	367 (30)	1,373 (24)
Stockholm	205 (20)	237 (22)	274 (23)	299 (23)	235 (19)	1,250 (22)
Lund	164 (16)	155 (14)	145 (12)	164 (13)	162 (13)	790 (14)
Gothenburg	139 (13)	137 (13)	120 (10)	128 (10)	134 (11)	658 (11)
Helsinki	109 (10)	133 (12)	129 (11)	120 (9)	67 (5)	558 (10)
Bergen	74 (7)	65 (6)	74 (6)	87 (7)	94 (8)	394 (7)
Umeå	37 (4)	38 (4)	79 (7)	73 (6)	94 (8)	321 (6)
Linköping	55 (5)	19 (2)	9 (1)	36 (3)	14 (1)	133 (2)
Tampere	11 (1)	20 (2)	6 (1)	21 (2)	66 (5)	124 (2)
Trondheim	28 (3)	40 (4)	39 (3)	15 (1)	0 (0)	122 (2)
Other hospitals	9	5	47 (4)	20 (1)	5	86 (1)

Table 2. Variables that must be recorded to qualify for inclusion in the Scandinavian Sarcoma Group Central Register for extremity and trunk wall sarcoma

• Sarcoma center responsible for treatment and follow-up reporting

• Age at diagnosis

• Sex

• Date of diagnosis

• Referral pattern (after: virgin, needle biopsy, open biopsy/intralesional excision, marginal excision, wide excision, local recurrence, metastasis)

• Metastases at diagnosis

• Tumor location, size and depth

• Histology

• Malignancy grade/malignancy grade not applicable

• Number of operations for primary tumor

• Type of operation (local excision or amputation)

• Surgical margin

• Adjuvant treatment or protocol number

Table 3. Distribution of histological subtypes of sarcomas in different time periods in the Scandinavian Sarcoma Group Central Register

Histological subtype	1987–1996	1997–2006	2007–2011	Total (%)
	n = 2,122	n = 2,477	n = 1,238	n = 5,837
Liposarcoma	13%	19%	22%	1,019 (18)
Solitary fibrous tumor	2%	1%	1%	70 (1)
Myxofibrosarcoma	0%	4%	11%	241 (4)
Fibrosarcoma	3%	4%	1%	193 (3)
Leiomyosarcoma	9%	13%	15%	699 (12)
Rhabdomyosarcoma	2%	1%	1%	80 (1)
Angiosarcoma	1%	1%	2%	85 (2)
Malignant peripheral nerve sheath tumor	5%	5%	4%	269 (4)
Synovial sarcoma	8%	6%	6%	392 (7)
Ewing sarcoma	2%	1%	2%	99 (2)
Other sarcoma	7%	8%	8%	454 (8)
Malignant fibrous histiocytoma^a	40%	31%	24%	1,921(33)
Unclassified sarcoma	5%	6%	3%	312 (5)

a (undifferentiated pleomorphic sarcoma)

Table 4. Distribution of malignancy grades among 5,462 soft tissue sarcomas according to Broders respectively 210 according to FNCLCC^a in different time periods. Rare sarcomas, traditionally not graded are excluded

Broders	1987–1996	1997–2006	2007–2011	Total
I	8%	12%	15%	606
II	14%	14%	14%	759
III	34%	26%	21%	1,539
IV	44%	48%	50%	2,558
FNCLCC^a			> 2006
1			24%	50
2			34%	72
3			42%	88

a Fédération Nationale des Centres de Lutte Contre le Cancer.

Table 5. Percentage of cases and total number of cases referred to sarcoma center virgin (including fine-needle or coarse-needle biopsy) or after surgical procedures/recurrence in 3 time periods, as reported in the Scandinavian Sarcoma Group Central Register

	1987–1996	1997–2006	2007–2011	Total
	n = 2,122	n = 2,477	n = 1,238	n = 5,837
Virgin/needle biopsy	52%	59%	70%	3,447
Open biopsy/surgery	36%	34%	25%	1,930
Referred after local recurrence	8%	4%	2%	276
Referred after metastasis	4%	3%	3%	184

Table 6. Site and depth of tumors in soft-tissue sarcoma (STS) cases according to time period, as reported in the Scandinavian Sarcoma Group Central Register

	1987–1996	1997–2006	2007–2011	Total
	n = 2,122	n = 2,477	n = 1,238	n = 5,837
Site
Trunk wall	15%	15%	15%	878
Upper extremity	21%	20%	20%	1,186
Lower extremity	65%	64%	64%	3,773
Depth
Subcutaneous	34%	36%	37%	2,043
Deep intramuscular	28%	28%	36%	1,715
Deep extramuscular	32%	26%	23%	1,874
Unclassified	4%	2%	2%	205

Figure 1. Cumulative local recurrence rate according to margins in 4,143 patients treated with curative intent at centers with >4 years of follow-up of more than 75% of surviving patients (p < 0.001). All margins tested against the others. Analysis was terminated at 100 cases left at risk.

Figure 2 Metastasis-free survival in 4,153 patients surgically treated in 3 time periods at centers with >4 years of follow-up of more than 75% of surviving patients (p < 0.005). The period 1987–1996 was tested against the others. Analysis was terminated at 100 cases left at risk.

Figure 3. Plot and results from Cox model of metastasis-free survival in 3,842 patients with soft-tissue sarcoma, according to 5 continuously reporting hospitals in the Scandinavian Sarcoma Group Central Register. The Cox model included sex, age at diagnosis, tumor size, tumor depth, and malignancy grade. The plots are specified for male sex, age =59 years, tumor size =8.1 cm, deep tumor location, and high grade of malignancy.

Table

	Hazard ratio (95% CI)	p-value^a
Hospital 0	1.00 Reference	0.01
Hospital 1	0.95 (0.79–1.13)
Hospital 2	1.13 (0.92–1.40)
Hospital 3	0.70 (0.54–0.91)
Hospital 4	1.01 (0.85–1.21)

a Likelihood ratio test

Table 7. Final margin distribution (%) and proportion of patients receiving radiation treatment according to margin status among 5,071 patients from the Scandinavian Sarcoma Group Central Register. The proportion of patients with a wide margin decreased (p < 0.001) and the proportion of patients having radiation treatment increased (p < 0.001)

	1987–1996		1997–2006		2007–2011		Total, n
Margin	Margin	Radiation treatment	Margin	Radiation treatment	Margin	Radiation treatment	Margin	Radiation treatment
Intralesional	9%	41%	12%	33%	14%	37%	580	212
Marginal	35%	32%	40%	41%	39%	38%	1,925	716
Wide or better	56%	7%	48%	22%	47%	29%	2,566	433
Total, n	1,793	331	2,224	687	1,054	352	5,071	1,361