Sample characteristics
Twenty-six women responded to the advert. Two were ineligible because of a current pregnancy, and four did not complete consent forms or confirm interview dates. The final sample comprised 20 women, aged 27–45 years (median 35.5) (Table 1 and Supplementary Table S1). Fourteen (70%) had been diagnosed during COVID-19, the remainder before it.
Table 1. Characteristics of the participants (N = 20)
In total, 17 of the 20 (85%) were diagnosed during pregnancy (5–35 weeks), and three (15%) postpartum (6–16 weeks), having initially sought help for symptoms during pregnancy. Half gave birth full term (>37 weeks); the rest had pre-term births (33–36 weeks) following induction or caesarean section. Breast cancer was most common (n = 13/20, 65%), including various subtypes (Supplementary Table S1). Two women had recurrent (metastatic) disease following initial diagnosis pre-pregnancy.
Symptom appraisal interval
Interpreting symptoms through the lens of pregnancy
Many participants made sense of their symptoms through a pregnancy lens, informed by familiarity with bodily changes that are considered ‘normal’ during pregnancy, for example, abdominal pain:
‘Because it was low down in my colon, it felt like it was womb-related […] [I thought] it must be something to do with the baby, because it was so low, something to do with the pregnancy. I never thought, “It could be something in my colon.”’
(Participant [P]10, bowel cancer)
Some participants looked up their symptoms online and were falsely reassured that they were pregnancy related, partly because they added ‘pregnancy’ to their searches.
Participants’ symptom interpretation did not end after their first consultation with an HCP but continued up to diagnosis (which in some cases involved multiple presentations to HCPs). Beliefs that symptoms were pregnancy related were sometimes reinforced by HCPs’ initial assessments or their lack of evident concern:
‘It wasn’t until I was pregnant and then the lump got a lot thicker and I developed quite a large lump very quickly. I don’t know whether it was because of COVID, but, because I was pregnant, I was just put under “it’s changes because of pregnancy” and they didn’t even want to see me at that point. Which obviously to me it made sense, you are pregnant, your breasts change. They weren’t concerned. Obviously, they are the professionals. I just listened to what their advice was.’
(P11, breast cancer)
A few participants put symptoms down to pre-existing pregnancy-related health conditions (for example, symphysis pubis dysfunction and previous miscarriage).
Some participants suspected that their symptoms might be cancer but wanted to believe they were pregnancy related. Hesitance to attribute symptoms to cancer despite having ‘red flag’ symptoms was mostly reported by those with breast cancer:
‘Of course [cancer] crossed my mind because it was a lump in my breast, but because I was pregnant I was just using that as a hook, well, I’m pregnant, it’s not going to be breast cancer. Trying to rationalise it, I felt it was much likely because I was pregnant, to be something pregnancy or hormone related. So maybe I just told myself that.’
(P4, breast cancer)
Suspecting cancer before formal diagnosis
Many participants reported a ‘gut feeling’ of concern over their symptoms and suspected cancer:
‘I’ve always checked myself because I knew I was quite vulnerable to any sort of skin cancer. I think I’ve always been aware of the risks and what the potential could be, but this was different. [Mole] looked different to anything I’d dealt with before and so I knew it wasn’t right, I just didn’t know in what respect.’
(P12, malignant melanoma)
Others suspected their symptoms might be cancer after looking them up online:
‘I put “lump on neck pregnancy” into Google and it had come up with an article of a woman who had Hodgkin’s lymphoma when she was pregnant. So that was already in my mind before I went, I was already frightened.’
(P1, Hodgkin lymphoma)
However, not all were influenced by information gathered online; some dismissed cancer as a possible explanation for their symptoms despite cancer appearing in search results:
‘When I was reading online, I didn’t think it could be cancer. I mean, it did come up when I was doing my research, but I thought I don’t think I’ve had any of those symptoms like the night sweats. I didn’t feel like any of it applied to me, apart from obviously the swelling was the concerning thing.’
(P19, non-Hodgkin lymphoma)
Help-seeking interval
Some participants mentioned their symptoms to their midwife, while others sought help directly from their GP. Reasons for not mentioning symptoms to midwives included lack of time, lack of direct contact during the COVID-19 pandemic, seeing different midwives at different appointments, or ‘not thinking it was going to be anything serious’ (P19, non-Hodgkin lymphoma). Participants were encouraged by midwives to see their GP after disclosing symptoms; in one case the midwife referred the participant to a direct access service (where HCPs can refer directly to specialist diagnostic and treatment services) for further investigation of a breast lump.
Symptoms incongruent with pregnancy
Motivations to seek help for symptoms varied. For example, two women diagnosed with bowel cancer had different symptoms that in turn influenced motivation. Participant 15 had blood in her stool, saw this as incongruent with pregnancy, and contacted her GP promptly:
‘I just started getting blood in my stools and I knew something wasn’t quite right. And I did some research about pregnancy and as far as I could gather, you can have bleeding but it tends to be much later on when you are very heavily pregnant and you can get haemorrhoids. But because I was so early, I didn’t think it fit, so I contacted the local GP.’
(P15, bowel cancer)
The unusual nature of symptoms at particular timepoints in pregnancy made some participants seek prompt help from their GP:
‘I knew how much breast changes there were and lumps and bumps, milk ducts and everything, all that was not unusual but I did think, gosh, approximately eight weeks, that feels odd. So I wasn’t unduly concerned, I was thinking it was something hormonal to do with being pregnant, but I made an appointment with the doctor for the next week.’
(P4, breast cancer)
Initial symptoms getting worse
After monitoring symptoms, several participants contacted their GP or visited healthcare settings such as accident and emergency or maternity wards because of severe pain or worsening of symptoms:
‘When I was about three months pregnant, I noticed a really small lump in my breast. I didn’t think much of it, I kept an eye on it. And I was getting stabbing pains as well. After about two months, I noticed that it hadn’t gone away and it had actually got bigger. So I went to my GP who then referred me to the breast care clinic.’
(P20, breast cancer)
The diagnostic interval
HCPs attributed symptoms to pregnancy or other health conditions
Participants’ accounts of HCPs reactions to their symptoms — and their decisions to refer them or not for clinical investigations — revealed that some HCPs had attributed symptoms to pregnancy, reassuring participants that these were ‘normal’ or ‘hormonal’:
‘I mentioned the symptoms to the midwife and I also phoned the GP because my back was very sore, but they thought the baby was lying on a nerve and this was why I was getting shooting pains up the arm and up my back.’
(P8, Hodgkin lymphoma)
Some, who consulted multiple times, reported being made to feel ‘silly’ (P8), ‘overly anxious’ (P8), or ‘hysterical’ (P16) first-time mothers. For example, Participant 8 who was subsequently diagnosed with stage 4 bulky Hodgkin lymphoma:
‘One doctor suggested I was just overly anxious because I’m a new mum and it made me feel silly because I’m thinking I’m not making it up but if they could see me in the actual surgery, they could see that there were lumps there, it wasn’t in my head.’
(P8, Hodgkin lymphoma)
Among some participants, with cancers other than breast, symptoms were ascribed to other health conditions despite symptoms persisting and/or worsening:
‘So initially I thought I had a really bad ear infection, so I went to my local GP, he had a look at my ear and he said, “Yes, it’s an ear infection”, and they prescribed me whatever it was to spray my ear. I noticed after about a week it was making no difference, so I went back to my GP and they re-prescribed it, had a look in my ear, said, “Yes, the ear canal is red. It just looks generally sore.”’
(P19, non-Hodgkin lymphoma)
Even when participants presented with symptoms typical of breast cancer, for example, bleeding from the nipple, some HCPs were reported as attributing these to pregnancy or other causes. However, it is not possible to know whether these HCPs suspected cancer or were simply trying to be reassuring:
‘My nipple was bleeding on a daily basis, and when I had my follow-up appointment on the phone and I spoke to a different consultant, by that point I was about thirteen weeks pregnant, they said because my breasts were changing maybe it was taking longer to heal, so probably nothing to worry about but if the bleeding persisted to get back in touch with them.’
(P2, breast cancer)
Re-presenting in primary care before referral for cancer tests
Some participants, particularly those with cancers other than breast, presented multiple times at their GP or in antenatal settings as their symptoms persisted, or had various tests in secondary care before being referred for cancer tests:
‘I went […] three times — this would have been in November, maybe once in October and twice in November [2018] — and said to them, “I am really worried about this pain that I am having” […] I think I went three times, and they did the same thing every time. They didn’t dismiss me, but I guess it was my first pregnancy, and I was just worried about the baby.’
(P10, bowel cancer)
Lack of face-to-face appointments during the COVID-19 pandemic made some participants contact their GPs repeatedly and/or chase up their referrals to secondary care. This suggests that in some cases the COVID-19 pandemic affected the usual cancer care pathway and associated safety netting for diagnostic uncertainty:
‘At that point, I had given up. I was like, it can’t be anything serious. So, I didn’t chase it up again until September twenty-twenty, my mole started to bleed, which I knew wasn’t normal. I was really concerned at that point, so I went back to my GP, “This is the fourth time I’ve contacted you. No one’s seen me face-to-face and I know this isn’t normal. Can you please do something?”’
(P12, malignant melanoma)
HCPs made referrals for cancer tests
Women who sought help for common symptoms such as breast lumps seemed to have timely referrals. Among participants later diagnosed with breast cancer, GPs reassured them that symptoms might be pregnancy related but promptly referred them for secondary care tests:
‘The GP didn’t seem unduly concerned … with hindsight, she may have just been putting on a calm front, but I felt reassured. The GP did an exam and said, “I’m pretty confident it is just because you are pregnant; however, the breast clinics are well funded, you’ll get in and seen quickly, so let’s just be on the safe side and refer you.” I was nine weeks pregnant.’
(P4, breast cancer)
Appraisal of timeliness to diagnosis
Many participants described in intricate detail the time it took to receive their cancer diagnosis, noting the weeks or months to diagnosis and treatment. Some blamed lack of face-to-face appointments during the COVID-19 pandemic for any delays in diagnosis, for example, Participants 8 and 11 who experienced lumps but were only diagnosed 3–4 months postpartum:
‘I waited a few weeks [after seeing the ear, nose, and throat specialist] and then I had to go back for an ultrasound to biopsy the neck, and it was only in December that I got told it was Hodgkin’s [sic] lymphoma. I was told […] it was spread around the body and it had entered the lung, so I got told all this just prior to Christmas but had [daughter] in September and obviously three months prior to that was when I started complaining about the symptoms.’
(P8, Hodgkin lymphoma)
One participant submitted a formal complaint to the NHS about delays encountered in referral and diagnosis — the response confirmed that she had met the criteria for urgent referral but that HCPs had not adhered to practice guidelines. Others were angry with themselves for not chasing referrals or asking to be seen sooner.
Some participants thought the delays in diagnosis were owing to the misattribution of symptoms to pregnancy, as in the cases of Participants 11 and 18 who were eventually diagnosed postpartum with stage 3 breast cancer despite presenting with breast lumps during pregnancy. Similarly, Participant 10’s bowel cancer was stage 4 by the time she was diagnosed:
‘By the time they took the tumour out in January, and then they scanned me in February, we found out that it had gone to my liver. [pause, participant upset] Whether it was already going to go to my liver or not, you don’t really know. But if I had been diagnosed earlier in the pregnancy, definitely it would have helped with my situation, life expectancy.’
(P10, bowel cancer)
Paradoxically, some participants felt lucky not to have been diagnosed earlier in pregnancy as this would have marred their enjoyment of it or led to difficult choices around continuation of pregnancy. They argued that ‘ignorance was bliss’ (P8) and the delay in diagnosis was ‘a blessing in disguise’ (P16) as it allowed ‘a bubble of joy and happiness’ (P8):
‘In hindsight maybe I’m glad I didn’t know I had breast cancer right at the very beginning of the pregnancy because I think if I had it would’ve clouded the whole pregnancy.’
(P2, breast cancer)
