Nature and duration of symptoms of cancers of the breast: report of a study of nature and duration of symptoms

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1 Promoting Early Cancer Presentation Group Nature and duration of symptoms of cancers of the breast: report of a study of nature and duration of symptoms Fiona Warburton, Lindsay Forbes November

2 Summary One hundred and sixty four women with breast cancer who had participated in the 2010 Cancer Patient Experience Survey completed a questionnaire about their symptoms. We analysed the data of 93 women (56.7%) who had not been diagnosed via the NHS Breast Screening programme. Eighty seven (93.5%) reported symptoms and of these 72 (83%) reported a lump, swelling or thickening in their breast or armpit and 16 (18%) nipple symptoms. Nineteen women (21.8%) had not realised their symptom was serious and 7 (8%) delayed going to the doctor with their symptoms for more than 3 months. Not realising the symptom was serious was a risk factor for delay in presentation (RR 9.56 (95% CI 2.03 to 45.06). Introduction The 2010 Cancer Patient Experience Survey included women with ICD-10 code C50 who agreed they could be re-contacted for further research. Ten thousand and seventy eight (91.1%) of these were known to be alive at the start of survey fieldwork for the study of nature and duration of cancer symptoms (9 Nov 2011). Two hundred women were randomly selected from these and sent a questionnaire about the nature and duration of their symptoms. Of these 200, 1 further woman was reported to have died and 164 (82.4%) returned a completed questionnaire. All respondents had been diagnosed in the year before the 2010 Cancer Patient Experience Survey. This report provides data on nature and duration of symptoms for the 93 (56.7%) of women who were not diagnosed through the NHS Breast Screening programme. Demographic characteristics of patients Ethnicity was available for 86 women. Eighty (86% of the sample) described their ethnicity as White. Age at diagnosis was available for 90 patients. The mean age at diagnosis was 58.6 years, with the youngest being 32 and the oldest 86 at the time of diagnosis. Twenty eight (30%) of respondents were in the least deprived quintile of deprivation (according to the distribution of IMD in England) and 10 (10.8%) were in the most deprived quintile. Route to diagnosis Eight three (89%) women were referred to hospital by their GP, 1 (1%) via A&E, and 6 (6.5%) via another route. There were no data on this available for three women. Symptoms that led to diagnosis Table 1 shows the symptoms reported by the 87 patients who reported any symptoms. Seventy two (83%) reported lump, swelling or thickening in breast or armpit. Any nipple symptom was reported by 16 (18%) and among these, nipple pulled in or distorted was most commonly reported. Only three women (6%) reported nipple symptoms only. 2

3 Table 1: Reported symptoms leading to diagnosis breast cancer patients Symptom n (%) Lump symptoms Lump, swelling or thickening in breast or armpit 72 (82.8) Pain Pain or discomfort in breast or armpit 18 (20.7) Nipple symptoms Nipple pulled in or distorted 12 (13.8) Change in size, shape or position of nipple 7 (8.0) Discharge or bleeding from nipple 5 (5.7) Rash or ulcer on nipple 1 (1.1) Other Change in appearance of breast skin 12 (13.8) Change in shape or size of whole breast 4 (4.6) Systemic symptoms 3 (3.4) Fifty five participants reported one symptom only. Table 2 shows the symptoms they reported. Table 2: Symptoms of those who reported one symptom only breast cancer patients Symptom n (%) Lump symptoms Lump, swelling or thickening in breast or armpit 47 (85.5) Pain Pain or discomfort in breast or armpit 3 (5.5) Nipple symptoms Nipple pulled in or distorted 1 (1.8) Change in size, shape or position of nipple 0 (0.0) Discharge or bleeding from nipple 1 (1.8) Rash or ulcer on nipple 0 (0.0) Other Change in appearance of breast skin 1 (1.8) Change in shape or size of whole breast 0 (0.0) Systemic symptoms 1 (1.8) Reasons for not going to the doctor Of the 87 women who reported at least 1 symptom, 40 (46%) reported that something had put them off going to the doctor. The most common reason (19, 21.8%) was not realising the symptom was serious. Table 3 shows the frequency of reporting for each of specific barriers to symptomatic presentation. These were relatively rarely reported. 3

4 Table 3: Reported barriers to symptomatic presentation breast cancer patients Barrier reported n (%) I had too many other things to worry about at the time 10 (11.5) I was worried about wasting the doctor s time 8 (9.2) I was too busy to make time to go to the doctor 7 (8.0) I was too scared to go and see the doctor 6 (6.9) It was difficult to make an appointment with the doctor 6 (6.9) I was too worried about what the doctor might find 4 (4.6) I found my doctor difficult to talk to 1 (1.1) I was too embarrassed to go to see the doctor 0 (0.0) It was difficult to arrange transport to the doctor s 0 (0.0) I didn't feel confident talking about my symptoms with the doctor 0 (0.0) Duration of symptoms For the 87 women who reported any symptoms, duration of symptoms was calculated using the question How long was it from the time you noticed these MAIN health problems or symptoms and first seeing a GP or hospital doctor? For those patients for whom this information was not available (n=12) we used the time between the symptom first starting and seeing a GP or presenting at accident & emergency, where a full date had been given at both time points, to calculate duration of symptoms. We were able to calculate duration of symptoms for 82 out of the 87 women who reported any symptoms (94.3%). In total, 7 (8%) delayed presentation by more than 3 months. Table 4 shows the reported duration of symptoms. The numbers in the table are small and therefore the percentages should be interpreted with caution. Table 4: Reported duration of symptoms breast cancer patients, by symptom 4 weeks or less > 4 weeks but <3 months > 3 months missing N (%) N (%) N (%) N (%) Lump, swelling or thickening in breast or armpit 51 (70.8)) 10 (13.9) 6 (8.3) 5 (6.9) Pain or discomfort in breast or armpit 10 (55.6) 6 (33.3) 1 (5.6) 1 (5.6) Nipple pulled in or distorted 6 (50.0) 3 (25.0) 1 (8.3) 2 (16.7) Change in appearance of breast skin 6 (50.0) 4 (33.3) 1 (8.3) 1 (8.3) Change in size, shape or position of nipple 4 (57.1) 1 (14.3) 1 (14.4) 1 (14.3) Discharge or bleeding from nipple 2 (40.0) 1 (20.0) 1 (20.0) 1 (20.0) Change in shape or size of whole breast 2 (50.0) 0 (0.0) 0 (0.0) 2 (50.0) Systemic symptoms 2 (66.7) 0 (0.0) 1 (33.3) 0 (0.0) Rash or ulcer on nipple 1 (100.0) 0 (0.0) 0 (0.0) 0 (0.0) 4

5 Risk factors for delay in presentation Table 5 shows the proportion delaying presentation for three months or more by age, index of multiple deprivation (IMD), symptom and whether or not they realised the symptom was serious. It was not possible to calculate adjusted relative risks because of small numbers. The results show that none of the symptoms were significantly related to delay, but those women who did not realise the symptom was serious were much more likely to delay Very few women reported barriers to symptomatic presentation and therefore we did not analyse their association with delay in presentation. Table 5: Risk factors for delay in symptomatic presentation among breast cancer patients reporting any symptoms Age Delay in presentation Relative risk for delay in presentation (95% CI) n (%) Unadjusted <70 (reference) 6/64 (9.4) /18 (5.5) 0.59 (0.08 to 4.61) Deprivation group Least deprived (reference) 1/25 (4.0) /15 (6.6) 1.67 (0.11 to 24.72) 2/21 (9.5) 2.38 (0.23 to 24.45) 0/11 (0.0) undefined Most deprived 3/10 (30.0) 7.50 (0.88 to Lump, swelling or thickening in breast or armpit 6/67 (9.0) 1.34 (0.17 to 10.35) Pain or discomfort in breast or armpit 1/17 (5.9) 0.64 (0.08 to 4.94) Nipple pulled in or distorted 1/10 (10.0) 1.20 (0.16 to 8.97) Change in appearance of breast skin 1/11 (9.1) 1.08 (0.14 to 8.11) Change in size, shape or position of nipple 1/6 (16.7) 2.11 (0.30 to 14.79) Discharge or bleeding from nipple 1/4 (25.0) 3.25 (0.50 to 20.95) Change in shape or size of whole breast 0/2 (0.0) undefined Systemic 1/3 (33.3) 4.39 (0.74 to 25.91) Rash or ulcer on nipple 0/1 (0.0) undefined Did not realise symptom was serious 5/17 (29.4) 9.56 (2.03 to 45.06). 5