Trends in presentation of bone and soft tissue sarcomas over 25 years little evidence of earlier diagnosis Royal Orthopaedic Hospital, Birmingham Rob Grimer, Lee Jeys, Gemma Smith, Graham Johnson
Are we getting better? Sarcomas are frequently not recognised by: Patients GPs Hospital doctors As a result there are often long delays before they are diagnosed
What do we know already Sarcomas are diagnosed late Only 16.5% are diagnosed through the 2 week wait clinic Of GP referrals only 13% are malignant Delays in diagnosis occur at every stage in the patient pathway Numerous Cancer Plans and early diagnosis initiatives have been introduced Have they worked??
How can we tell if we are getting better? Duration of symptoms Size at time of diagnosis Appropriate referral By stopping people presenting like this? Had been seeing GP for 1 year with ulcer In fact high grade STS
Method Analysis of prospectively kept database Size at presentation Duration of symptoms ( how long have you had any symptoms related to this...?) Proportion of whoops procedures Analysed over a 25 year period
The patients: 4934 patients 2568 bone sarcomas 1240 osteosarcomas 539 chondrosarcomas 459 Ewing s sarcomas 276 spindle cell sarcomas 54 others 2366 STS
Bone Sarcomas Mean size = 10.7 cm Osteosarcoma 10.7cm Chondrosarcoma 11.3cm Ewing s sarcoma 9.9cm Spindle cell sarcoma 10.4cm
29 yr old felt he was sitting on a knobbly seat while on way on honeymoon to Maldives worried? He was sitting on a 15cm chondrosarcoma!
Count Size distribution - Osteosarcoma 160 140 120 100 80 Mean size 10.5cm 10.9cm, 10.1cm 60 40 20 0 0 5 10 15 20 25 30 35 40 Size in cm
1986.000 1987.000 1988.000 1989.000 1990.000 1991.000 1992.000 1993.000 1994.000 1995.000 1996.000 1997.000 1998.000 1999.000 2000.000 2001.000 2002.000 2003.000 2004.000 2005.000 2006.000 2007.000 2008.000 2009.000 SizeA Are we getting better OS size? 45 40 35 30 25 20 15 10 5 0 Size at diagnosis - unchanged over 25 years 10.5cm
STS Mean size = 9.9 cm (range 0.3 to 47cm) Liposarcoma 13.3cm MPNST 10.5cm MFH 10.3cm Leiomyosarcoma 7.7cm Synovial sarcoma 6.9cm Epithelioid sarcoma 3cm
Mean size (cms) Mean size of Sarcomas over 25 yrs 30 25 20 Soft Tissue Sarcoma 15 95% CI Bone sarcoma 95% CI 10 5 0 1985 1987 1989 1991 1993 1995 1997 1999 2001 2003 2005 2007 2009 Bone sarcomas - no change, with time STS slightly improved from 10.3cm in 1990s to 9.6cm since 2000
Weeks Duration of symptoms Bone sarcomas median16 weeks STS median 26 weeks 200 175 150 125 100 75 50 25 Bone STS Bone sarcoma STS 0 DuratSymp
Median duration (weeks) Median duration of symptoms 70 60 50 40 30 Soft Tissue Sarcoma IQR Bone sarcoma IQR 20 10 0 1985 1987 1989 1991 1993 1995 1997 1999 2001 2003 2005 2007 2009 Claimed duration of symptoms is INCREASING for bone sarcomas Increased from 16 to 20 weeks since 2000 STS symptom duration unchanged (26 weeks)
Duration of symptoms by diagnosis Bone sarcomas STS Osteosarcoma 12 weeks Liposarcoma 28 weeks Chondrosarcoma 52 weeks Leiomyosarcoma 26 weeks Ewings 20 weeks MFH 20 weeks Spindle cell sarcoma 20 weeks Synovial sarcoma 52 weeks Chordoma 104 weeks MPNST 26 weeks
Other factors sex Symptom duration no difference between males and females for bone or STS Size Women present earlier STS 10.1cm vs 9.5cm (p=0.04) Bone - 10.5cm vs 9.8cm (p=0.008)
Does age affect it? Age group < 10 10-19 20-29 30-39 40-49 50-59 60-69 70-79 80+ Size (cms) Soft Tissue Sarcomas 4.2 7.4 8.2 8.9 10.0 10.5 10.3 10.3 11.1 Bone Sarcomas (cms) 9.8 10.5 10.1 10.1 9.6 11.6 10.6 11.9 11.6 Symptom duration (weeks - median) Soft Tissue Sarcomas 8 16 26 26 26 26 26 20 26 Bone Sarcomas 7 12 20 26 36 36 32 28 26 Older patients have bigger tumours and somewhat longer duration of Sx
Does site matter? STS Superficial tumours = 6cm Deep tumours = 11.2cm
% prev.inadvertent excision Mean size (cm) Whoops! 25% of patients had had a previous inadvertent excision, mean size 5.8cm Slight decrease in incidence with time, but size unchanged 55 50 45 40 35 30 25 20 15 10 5 0-5 1985 1987 1989 1991 1993 1995 1997 1999 2001 2003 2005 2007 2009 previous inadvertent excision Size 95% CI
More whoops 55% of all superficial STS had a previous whoops, (338 of 615) Mean size was 5cm compared to 7.0cm for those treated primarily 15% of all deep STS had a previous whoops (262 of 1751) Mean size was 7cm compared to 12cm for those treated primarily
Why are they missed?? Painful shoulder 4 months 35 yr old 6 weeks later Low level of awareness?
Bigger is NOT better! All these countries have better Why? outcomes (STS) Scandinavia 7cm Italy Australia UK 6cm 7cm 10cm Aren t we aren t bothered about lumps and bumps? Are our doctors not worried? We need a new strategy... (all ideas welcome!)
Does earlier diagnosis = better outcomes? Patients are happier with less delay Easier to treat Less risk of metastases at diagnosis 30 25 20 15 10 Bone STS 5 0 <5cm 6 to 10cm 11 to 15cm 16-20 cm >20cm
Cum. Survival and better survival... All sarcomas survival by size 1.8.6.4.2 0 <5cm Cum. Survival (under 5 Event Times (under 5) <10cm Cum. Survival (five to Event Times (five to ten) <15cm Cum. Survival (ekeven Event Times (ekeven to Cum. Survival (sixteen <20 cm Event Times (sixteen to Cum. Survival (over 20 >20cm Event Times (over 20) 0 20 40 60 80 100 Time in months
Conclusion Bone and soft tissue sarcomas are diagnosed late We re not getting better None of the UK guidance (2000 and 2005) on early diagnosis or the 2006 Improving Outcomes Guidance or the introduction of 2 week waits has made any obvious difference.
Prof Sir Mike Richards.. We know the main reason our survival rates lag behind other countries is because too many people are diagnosed late. This is why our Strategy focuses on earlier diagnosis which we will achieve through raising the public s awareness of the signs and symptoms of cancer and also providing better access to diagnostic tests. (Improving outcomes a strategy for cancer, 2011)... but will it happen for sarcomas????