Delays in the management of retroperitoneal sarcomas.
ABSTRACT Retroperitoneal sarcomas are rare and treatment should optimally be centralized. Despite successful centralization with 90% of the patients referred prior to surgery, delays occur, which led us to assess lead times in a population-based series. Method. Patients diagnosed with retroperitoneal sarcoma in the southern Sweden health care region 2003-2009 were eligible for the study. Data on referrals and diagnostic investigations were collected from clinical files from primary health care, local hospitals, and from the sarcoma centre. Lead times were divided into patient delays and health care delays caused by primary health care, local hospitals, or procedures at the sarcoma centre. Results. Complete data were available from 33 patients and demonstrated a median patient delay of 23 days (0-17 months) and median health care delay of 94 days (1-40 months) with delays of median 15 days at the general practitioner, 36 days at local hospitals, and 55 days at the sarcoma centre. Conclusion. Centralization per se is not sufficient for optimized and efficient management. Our findings suggest that delays can be minimized by direct referral of patients from primary health care to sarcoma centers and indicate that development of coordinated diagnostic packages could shorten delays at the sarcoma centre.
Article: [Practice guideline 'Diagnostic techniques for soft tissue tumours and treatment of soft tissue sarcomas (revision)'].[show abstract] [hide abstract]
ABSTRACT: Members of the Dutch working group on soft tissue tumours developed an up-to-standard evidence-based multidisciplinary clinical practice guideline for the diagnosis of soft tissue tumours and the treatment and follow-up of soft tissue sarcomas, in cooperation with the Dutch Association of Comprehensive Cancer Centres and the Dutch Institute for Healthcare Improvement. A soft tissue sarcoma is defined as every non-epithelial tumour that does not originate in haematopoietic or lymphatic system, central nervous system or bone. The guideline lists 'alarm signals' to raise awareness of malignancy and recommends consulting a multidisciplinary team. Non-invasive imaging has to be completed before proceeding to any invasive (diagnostic) procedure or assessment of dissemination. Aspiration cytology can be useful for differentiating between sarcoma and other malignancies. A definite diagnosis is obtained by means of image-guided needle biopsy. Tumours will be classified according to the World Health Organization and graded according to the Federation Nationale des Centres de Lutte Contre le Cancer. Surgical excision with a tumour free margin of 2 cm is the core of therapy, taking into account vital structures when necessary. In case of small superficial tumours (diameter < or = 3 cm) excision biopsy may be justified. Radiotherapy is almost always necessary and certainly indicated when wide margins are impossible even after re-resection. In the case of primary metastatic disease, an individual decision should be taken after multi-disciplinary consultation concerning the possibility of curative or palliative treatment. Neither neo-adjuvant nor adjuvant chemotherapy is standard. Chemotherapy may be useful in metastatic disease. The guideline advises referring patients who are eligible for chemotherapy to a centre and that they should be included in a study protocol.Nederlands tijdschrift voor geneeskunde 05/2005; 149(17):924-8.
[show abstract] [hide abstract]
ABSTRACT: In this article, the authors describe the experiences of men with prostate cancer and their spouses between diagnosis and surgery. As part of a longitudinal qualitative study, semistructured interviews were held with 34 prostate cancer patients who were waiting for surgery. Separate interviews were held with their spouses. Six main components of experience were evident from the analysis of transcripts related to the presurgery period: 1) the news of a diagnosis of prostate cancer came initially as a shock for both partners, the impact of which lessened over time; 2) the new reality of illness necessitated readdressing the marital relationship, most often resulting in a sense of renewed connection and commitment; 3) the illness crisis precipitated a search for information to guide decisions about treatment; 4) there was a need for couples to decide who to inform about the cancer diagnosis and how much to say about it; 5) couples attempted to seek a semblance of normality in their lives, especially after treatment decisions had been made; and 6) despite attempts to minimize the potential impact of upcoming surgery, anxiety was typically experienced at least intermittently by one or both partners. Physicians, nurses, social workers, and other health professionals need to facilitate attempts by the patient to gather and synthesize information. Cancer specialists can play a positive role in reducing distress in couples, and, thus, the attention of the specialists to communication issues is critical. The strain of waiting for surgery must be considered when treatment recommendations are made; watchful waiting protocols require further study from a psychological perspective. Clinicians need to be alert to the balance between being positive and carrying on as normal, and acknowledging and dealing with the distress that arises.Cancer Practice 7(3):130-5.
Article: Diagnostic delay causes more psychological distress in female than in male cancer patients.[show abstract] [hide abstract]
ABSTRACT: From July 1990 to July 1991, 263 consecutive cancer patients admitted to our oncological unit for the first time were invited to participate in a questionnaire based study. 252 patients responded and were included in the final analysis. The aim of the survey was to examine the delays involved in diagnosis and treatment of cancer and the possible psychological distress associated to the different periods of delay. A shorter patient delay was found among patients under the age of 30 years (P < 0.005). Patients with higher education had a significantly shorter delay from the time of contact with the GP to admittance to the local hospital (P <0.005). The diagnostic delay was reported to be significantly more distressing for females compared to males (P <0.05). The reported psychological distress, however, correlated positively to the actual length of total delay (P<0.005) for both sexes. All patients reported that the delay between local hospital referral and admittance to the oncological unit to be the most distressing delay period to cope with.Anticancer research 16(2):995-9. · 1.73 Impact Factor
Hindawi Publishing Corporation
Volume 2010, Article ID 702573, 4 pages
DelaysintheManagement of RetroperitonealSarcomas
AndersRydholm,3and Mef Nilbert1,5
1Departments of Oncology, Institute of Clinical Sciences, Sk˚ ane University Hospital, Lund University, 22185 Lund, Sweden
2Departments of Surgery, Institute of Clinical Sciences, Sk˚ ane University Hospital, Lund University, 22185 Lund, Sweden
3Departments of Orthopedics, Institute of Clinical Sciences, Sk˚ ane University Hospital, Lund University, 22185 Lund, Sweden
4Department of Surgical Oncology, University Medical Centre Groningen, University of Groningen, 9700 Groningen, The Netherlands
5Clinical Research Centre, Copenhagen University, Hvidovre University Hospital, 2650 Hvidovre, Denmark
Correspondence should be addressed to Mef Nilbert, firstname.lastname@example.org
Received 30 July 2010; Accepted 13 September 2010
Academic Editor: Ole Nielsen
Copyright © 2010 Jojanneke Seinen et al. This is an open access article distributed under the Creative Commons Attribution
License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly
Retroperitoneal sarcomas are rare and treatment should optimally be centralized. Despite successful centralization with 90%
of the patients referred prior to surgery, delays occur, which led us to assess lead times in a population-based series. Method.
Patients diagnosed with retroperitoneal sarcoma in the southern Sweden health care region 2003–2009 were eligible for the study.
Data on referrals and diagnostic investigations were collected from clinical files from primary health care, local hospitals, and
from the sarcoma centre. Lead times were divided into patient delays and health care delays caused by primary health care, local
hospitals, or procedures at the sarcoma centre. Results. Complete data were available from 33 patients and demonstrated a median
patient delay of 23days (0–17months) and median health care delay of 94days (1–40months) with delays of median 15days at the
general practitioner, 36days at local hospitals, and 55days at the sarcoma centre. Conclusion. Centralization per se is not sufficient
for optimized and efficient management. Our findings suggest that delays can be minimized by direct referral of patients from
primary health care to sarcoma centers and indicate that development of coordinated diagnostic packages could shorten delays at
the sarcoma centre.
Retroperitoneal sarcomas represent 0.1% of all malignancies
and are often clinically challenging due to anatomical
proximity to vital structures and a considerable risk for local
recurrence . The rarity, complex diagnostics, and surgical
challenges imply that these tumors should be managed by
experienced sarcoma teams. Centralized treatment per se
may not be sufficient since delays that may allow tumor
progression, complicate surgery, increase the risk of local
recurrence, and cause unnecessary worry for patients are
experienced at general practitioners and local hospitals as
well as at sarcoma centers [2–6]. Delays have been linked
to adverse outcome in several tumor types, including breast
cancer, colorectal cancer, urothelial cancer, and esophageal
cancer [7–10]. Benchmarks for timely management have not
been defined in retroperitoneal sarcoma, but large tumor
size represents an adverse prognostic factor, which strongly
argues for efficient management. Detailed understanding of
the causes of delays is needed for optimized management,
which led us to identify diagnostic lead times related to
the patient, general practitioners, and procedures at local
hospitals and at the sarcoma centre in a population-based
series of retroperitoneal sarcoma patients.
Primary, histologically verified retroperitoneal sarcoma was,
in the southern Sweden health care region (1.5 million
inhabitants), diagnosed in 39 patients between 2003 and
2009. Complete data were available from 33 patients. All
relevant medical records from general practitioners, local
hospitals and the sarcoma centre were collected. Patient’s
Table 1: Summary of clinicopathologic characteristics.
Age, mean (range)
Tumor size, cm, mean (range)
Spindle cell sarcoma
Inflammatory myofibroblastic sarcoma
Atypical solitary fibrous tumor
GIST: gastrointestinal stromal cell tumor.
NOS: not otherwise specified.
delay was defined as the time from onset of self-reported
symptoms to the first visit to a medical professional, which
could be a general practitioner or a specialist. Health care
delay was defined as the time from the first visit to the start
of treatment, which was in most cases surgery. Hereunder,
lead times were specified to occur in primary health care
(from the first visit to a general practitioner until referral
to a local hospital or sarcoma centre), at local hospitals
(from the first visit until the start of treatment or referral
to the sarcoma centre) or in the sarcoma centre (from the
first visit until start of treatment). Pathology lead time was
defined as the time from referral for cytology/biopsy until
confirmed malignancy. Radiology lead time was defined as
the time from referral for the first investigation to the result
of the final investigation. All lead times were expressed as
median times in order to minimize the impact of skewed
distributions. According to Swedish health care regulations,
the study represents a quality control project, for which
ethical permission is not required.
Complete data were available from 33 patients (Table 1). The
mean age at diagnosis was 66 (21–87) years, and the study
included 17 men. Liposarcoma and leiomyosarcoma were
the predominant histopathological subtypes. The majority
(n = 19) of the tumors were high grade and the mean
tumor size was 21 (4–60)cm. Median and individual delays
are presented in Figures 1 and 2. The median lead time from
onset of self-reported symptoms to the first medical visit
was 23 days (0–17 months). Though 15 patients consulted a
medical professional within 1 month of onset of symptoms,
patient’s delay was the predominant in 12/33 cases. The
Onset of symptoms
23 (0–524) days
General practitioner delay
15 (0–244) days
Sarcoma centre delay
55 (1–483) days
N = 30
Local hospital delay
36 (2–1123) days
Figure 1: Overview of the different median lead times.
0200 400 600
Overview of all cases
Figure 2: Bar chart demonstrating individual patients’ lead times
(one outlier with a 3-year local hospital delay was omitted for
reasons of illustration).
most common symptoms (n = 14) were pain or abdominal
discomfort whereas 4 tumors were incidentally diagnosed
at surgery or radiologic investigations for other causes. The
and consisted of a general practitioner’s lead time of median
15 days (0–8 months), a local hospital lead time of 36 days
(0–37 months), and a sarcoma centre lead time of 55 days
(1–16 months). The longest delays were caused by erroneous
primary diagnosis (7, 16, and 40 months) and comorbidity
that required complimentary medical procedures prior to
surgery (5, 8, and 19 months). Among the 17 patients who
consulted a general practitioner, 11 were referred within 1
month of the first visit and 6 were referred directly to the
sarcoma centre. From local hospitals, 11/23 patients were
that half of the patients spent more than a month at this
stage. The sarcoma centre lead time of median 55 days
represented the longest delay in 12/33 patients.
The diagnostic delays were divided into pathology and
radiology lead times (Figure 3). In 25 patients, a fine
needle aspiration cytology and/or core needle biopsy was
performed, 14 of which were performed at the sarcoma
0 100200 300400
Median delay (days)
Figure 3: Box-plot demonstrating the radiology, pathology, and
surgery lead times at the sarcoma centre. Outliers are marked by
centre. The pathology lead time was median 22 days (0–4
months) with some of the longest delays caused by inconclu-
sive results from cytology/histopathology. Repeated needle
biopsies were required in 5 patients, and 11 patients were
operated on without a histologically confirmed diagnosis.
Radiology lead time was median 36 days (0–8 months) and
the investigations included abdominal CT scans in all but
one patients, complemented with CT scans of the thorax
and renography in most patients. The delay from completed
diagnostics to surgery was median 13 (1–57) days.
Management of retroperitoneal sarcomas requires a multi-
disciplinary approach with contributions from radiologists,
pathologists, surgeons, and oncologists. Though primary
surgery at a sarcoma centre is beneficial, efficient diagnostics
is central. In southern Sweden, centralized treatment has
been promoted since a decade with 90% of the patients
currently referred to the sarcoma centre before surgery. In
order to characterize delays and causes hereof, we assessed
lead times in our population-based cohort. The median
patient’s delay was only 3 weeks, though considerable longer
delays occurred in some cases and indeed represented the
predominant delay in almost half of the patients (Figure 2).
It should, however, be kept in mind that these data are based
on self-reported symptoms and thus prone to bias compared
of referral. No comparison can be made to published delays
siderable delays have been reported. Brouns et al. reported
median patient’s delays of 2 months in more than half of the
patients and of at least 6 months in 20% of patients .
Clark and Thomas reported lead times of median 12 months
We found a median general practitioners’ delay of 16 days,
which indeed represents the shortest health care lead time.
Considering the rarity of retroperitoneal sarcomas, these
prompt reactions to suspected malignancy are impressive.
Our data demonstrate that the time is lost at the
subsequent step for patients that are primarily referred to a
local hospital. The median lead time from the local hospital
to the sarcoma centre was 5 weeks, and in several cases
investigations originally performed at the local hospital were
repeated at the sarcoma centre. This observation strongly
suggest that patients with suspected retroperitoneal sarcoma
should be directly referred to the sarcoma centre in order to
avoid unnecessary procedures and reduce lead times.
A series of investigations are typically needed in the
diagnostic workup and surgical planning of retroperitoneal
sarcoma and treatment decisions are made at multidisci-
plinary conferences. Against this background, it is not sur-
prising that the sarcoma centre lead time of median 8 weeks
was predominant. Additional morphological investigations
needed to reach a pathological diagnosis and requests for
complimentary imaging were identified as the major causes
of delay (Figure 3). Radiology delays were the predominant
with median delays exceeding 5 weeks in half of the cases.
Separate requests for different examinations rather than
coordinated examinations likely contributed to the delays.
Due to limited resources at the sarcoma centre, a significant
number of radiology investigations were also performed
at local hospitals, which contributed to longer lead times,
since the results of the investigations were not immediately
available to the surgeons at the sarcoma centre. This leads
us to suggest that retroperitoneal sarcoma radiology pack-
ages could be defined to achieve efficient and coordinated
radiologic investigations and hereby reduce lead times. The
pathology lead time of median 3 weeks leaves room for
improvement. We suggest that cytology specimens from
fine needle examinations should be immediately evaluated.
Hereby, representative material can be directly ensured
and direct resampling ordered when necessary. Finally, the
median lead time of 2 weeks from complete diagnostic
workup until surgery is considered acceptable against the
background of coordinated efforts from oncological sur-
Studies that have addressed the diagnostic delays in other
less common tumor types; that is, esophageal cancer and
cancer of the urinary tract have reached results similar to
ours. Esophageal cancer also requires extensive diagnostic
workup followed by complex surgery when possible. Groten-
endoscopy at which a diagnostic biopsy was obtained until
surgery and median 2 weeks from the treatment decision
at a multidisciplinary conference until surgery . The
authors could also demonstrate that rapid management was
associated with favorable outcome as regards both morbidity
and mortality. Holm¨ ang and Johansson analyzed diagnostic
and treatment delays in patients with upper urothelial cancer
with a median delay from urography to surgery of 3–8
weeks with considerable differences in delay and tumor
stage between different hospitals . They suggest that large
tumors lead to more rapid workup and earlier surgery. The
rarity and variable clinical course of retroperitoneal sarcoma
precludes analysis of outcome, but interestingly, some of
the longest doctor’s delays occurred in patients with large
We conclude that a substantial number of patients in this
considerable diagnostic delays. General practitioners’ delays
were acceptable, local hospital delays should be possible to
minimize, and sarcoma center delays could be shortened
through improved coordination. Our data point to three
possible improvements. Patients with suspected retroperi-
toneal sarcomas should be directly referred to sarcoma
centers to reduce lead times at local hospitals. At the sarcoma
centre, radiologic and pathologic investigations should be
coordinated, for example, through predefined radiology
packages and prioritized evaluation of cytology/pathology
specimens. Finally, lead times should be prospectively reg-
istered in order to map bottle necks in different systems
and evaluate the effect of altered routines for diagnostic
workup. Such data would also allow for establishment of
clinical diagnostic guidelines and limits for timely care of
The authors would like to thank P¨ ar-Ola Bendahl for
statistical advice. This study was financially supported by the
Swedish Research Council, the Swedish Cancer Society, and
the Nilsson Cancer Fund.
 S. Weiss and J. Goldblum, Enzinger and Weiss’s Soft Tissue
Tumors, Mosby, St. Louis, Mo, USA, 4th edition, 2001.
 A. N. van Geel, H. K. Wyrdeman, C. Seynaeve, P. C. W.
Hogendoorn, A. H. H. Bongaerts, and W. M. Molenaar,
“Practice guideline ’Diagnostic techniques for soft tissue
tumours and treatment of soft tissue sarcomas (revision)’,”
Nederlands Tijdschrift voor Geneeskunde, vol. 149, no. 17, pp.
 R. E. Gray, M. I. Fitch, C. Phillips, M. Labrecque, and L. Klotz,
“Presurgery experiences of prostate cancer patients and their
spouses,” Cancer Practice, vol. 7, no. 3, pp. 130–135, 1999.
cancer patients,” Anticancer Research, vol. 16, no. 2, pp. 995–
 S. Benedict, R. D. Williams, and P. L. Baron, “Recalled anxiety:
nursing forum, vol. 21, no. 10, pp. 1723–1727, 1994.
 D. P. H. Stark and A. House, “Anxiety in cancer patients,”
British Journal of Cancer, vol. 83, no. 10, pp. 1261–1267, 2000.
 V. Arndt, T. St¨ urmer, C. Stegmaier, H. Ziegler, G. Dhom, and
cancer patients in Germany—a population based study,”
British Journal of Cancer, vol. 86, no. 7, pp. 1034–1040, 2002.
 M. R. Langenbach, J. Schmidt, J. Neumann, and H. Zirngibl,
“Delay in treatment of colorectal cancer: multifactorial prob-
lem,” World Journal of Surgery, vol. 27, no. 3, pp. 304–308,
 S. Holm¨ ang and S. L. Johansson, “Impact of diagnostic and
treatment delay on survival in patients with renal pelvic
and ureteral cancer,” Scandinavian Journal of Urology and
Nephrology, vol. 40, no. 6, pp. 479–484, 2006.
 B. A. Grotenhuis, P. van Hagen, B. P. L. Wijnhoven, M. C. W.
Spaander, H. W. Tilanus, and J. J. B. van Lanschot, “Delay
in diagnostic workup and treatment of esophageal cancer,”
Journal of Gastrointestinal Surgery, vol. 14, no. 3, pp. 476–483,
 F. Brouns, M. Stas, and I. De Wever, “Delay in diagnosis of soft
tissue sarcomas,” European Journal of Surgical Oncology, vol.
29, no. 5, pp. 440–445, 2003.
 M. A. Clark and J. M. Thomas, “Delay in referral to
a specialist soft-tissue sarcoma unit,” European Journal of
Surgical Oncology, vol. 31, no. 4, pp. 443–448, 2005.