University Hospitals of Liverpool Group

3. Mr N complains that, following surgery on 10 March 2021, clinicians from the Trust failed to recognise signs that his wife had recurrent breast cancer and did not carry out a full body scan. He believes if his wife had been treated, she could have lived longer. Instead, she felt her concerns were dismissed and Mr N says he has been left feeling she was not treated as an individual. Mr N wants the Trust to acknowledge its failings and apologise to his family. He wants it to act so other patients do not have the same experience.

4. In 2020 doctors diagnosed that Mrs N had cancer in her right breast. She completed chemotherapy in January 2021 and had surgery on 10 March 2021.

5. Mrs N attended an appointment with Ms A (Consultant Oncoplastic Breast Surgeon) at the Trust’s Department of Breast Surgery and Endocrine Surgery on 26 March 2021. Ms A noted Mrs N recovered well from surgery. Mrs N then had fifteen sessions of radiotherapy to reduce the risk of the cancer recurring. This ended in May 2021.

6. Over the following months Mrs N was concerned with changes that she noticed in different areas of the body. She contacted the breast cancer nurses and attended a review on 19 August 2021. Clinicians were not concerned about recurrent cancer during these contacts. On 8 November the breast cancer team discharged Mrs N from the service.

7. Mrs N contacted the breast cancer nurses again with concerns in February 2022. This led to an appointment on 21 March with a specialist nurse. The nurse considered there were no signs of recurrent cancer and suggested Mrs N was experiencing anxiety.

8. In June 2022 Mrs N’s GP arranged for her to have a chest X-ray. This showed signs of possible lung cancer. A follow up CT scan clearly showed evidence of extensive metastatic cancer (meaning the disease had spread to other parts of the body). The investigations showed her lungs, liver and other areas were affected. In August Mrs N saw an oncologist from the Trust who confirmed the cancer was incurable and the focus would be on controlling the cancer to try and improve symptoms and prolong life. Sadly, Mrs N died on 26 August.

9. Mr N’s family complained to the Trust in September and October 2023 on his behalf. This led to them attending a meeting with representatives from the Trust on 22 October. The Trust then issued a written response to the complaint on 20 March 2024. Mr N remained dissatisfied, so he complained to us.

Post-operative scans

13. Mr N believes clinicians did not provide appropriate follow-up monitoring for his wife following her surgery in March 2021. He believes she should have had a full body scan.

14. The RCR Guidance includes recommendations for screening and investigating women following breast cancer surgery. It recommends annual mammograms annually for each of the first five years after treatment and then mammograms every five years. It says women with significant other health issues should be considered for alternative management.

15. The clinical records show Mrs N had a high-grade cancer before her surgery in March 2021. In the UK the most common way to categorise how big and cancer is and how far it has spread (known as staging) is by using the TNM staging system. Cancers are graded between T1 (the smallest) and T4. Mrs N had a T3 cancer, which meant it was bigger than 5cm. In September 2020 a CT scan had also shown two small nodules in Mrs N’s lungs. A CT scan on 20 April 2021 showed no significant changes in these two nodules.

16. The First Surgical Adviser told us Mrs N had a type of cancer described as high-grade node positive. The results of her surgery in March 2021 clearly showed a large volume of cells that were resistant to chemotherapy. Both the Nursing Adviser and the First Surgical Adviser pointed out that Mrs N’s original cancer had an oncotype DX score (a test that helps predict the risk of breast cancer recurrence) of 42. This meant there was a high risk the cancer would return. Analysis of the cancer in March 2021 also suggested the cancer was more aggressive than expected with an increased likelihood of it spreading further. Ten of her axillary lymph nodes were affected by the cancer.

17. The Nursing Adviser told us it may have been beneficial for the breast surgery team to request a follow-up scan for Mrs N after one year. While Mrs N had small nodules on her lungs these were ‘indeterminate.’ This means the size was unclear. If the nodules had been large this should have led to further monitoring and a scan after three to six months. The evidence suggests the nodules were benign, as they did not change even when recurrent cancer was present. There was no requirement for these to lead to further scans. This would have been a clinical decision by the team, and we cannot say this fell below any specific standard.

18. The First Surgical Adviser said most teams would recommend re-staging investigations following the results from Mrs N’s surgery. Patients who have significant residual disease, particularly in the axillary nodes, are at high risk of recurrence. The First Surgical Adviser said the team should have advised re-staging with at least a CT scan of the chest, abdomen and pelvis. However, this is based on the First Surgical Adviser’s opinion and is not a mandatory requirement in any clinical guidelines.

19. The Second Surgical Adviser told us there is a lack of standardised national guidance about follow up after breast cancer. They said consultants in breast units all aspire to have the capacity to review their patients regularly after surgery. The current system does not allow for such an approach. They said there is no evidence that intensive clinical follow-up or regular scanning alters survival rates. The Second Surgical Adviser said the follow up arrangements for Mrs N were appropriate.

20. The Oncology Adviser said there could have been a follow up for Mrs N because of her history of high-risk breast cancer and the presence of nodules. The lung nodules were present on a CT scan in July 2022 and were unrelated to the metastases in the lungs found at the same time. The nodules were found to be benign, and an earlier scan would have confirmed this, and it is not certain it would have identified any metastatic cancer. No further follow up would have been necessary.

21. Each of the four clinical advisers have differing opinions about how the clinicians from the Trust should have monitored Mrs N following her surgery. This is because there was no specific guidance that applied to her circumstances at the time. The clinicians could have arranged further reviews and scans, but there was no requirement for them to do so. We recognise this is likely to be disappointing for Mrs N’s family.

22. We find that clinicians followed the RCR Guidance when considering follow up actions for Mrs N after her surgery. We have seen any of evidence of failings in this respect.

Contact with the breast care team

23. Mr N complains that his wife contacted the breast care team at the Trust several times because ‘she did not feel right.’ He said the team told her she did not need a full body scan and instead offered her counselling sessions. It was left to her own GP to request a scan, which showed the cancer had spread to her lungs and liver. He says if she had been treated seriously she would have had a better chance of fighting the disease.

24. Good Medical Practice says doctors must provide a good standard of care. This includes carrying out adequate assessments, taking account of the patient’s history and examining them if necessary. Doctors should also arrange timely treatment and appropriate investigations or referrals if needed.

25. The NICE Guideline says all people who have had breast cancer treatment should have an agreed, written, care plan recorded in their notes. This often called a treatment summary. It should include contact details for support and signs and symptoms for the person to monitor or seek advice about. It says all women who have had breast cancer should have an annual mammogram for five years with mammograms every three years after that point.

26. The NMC Code contains the professional standards that nurses must uphold. It says nurses must act in the best interest of their patients. It says they should practise effectively. The NMC Code says nurses should treat people as individuals. They should listen and respond to the person’s preferences and concerns.

27. The Trust Policy describes the Moving Forward programme for patients diagnosed with non-metastatic cancer at the Trust. It explains how it is a change from the usual follow-up of regular reviews for at least five years for all breast cancer treatment patients. It sets out the criteria and process for discharging patients following the end of their treatment.

28. The Trust Policy says a Moving Forward appointment should take place within six months of the end of treatment. The focus of the appointment is on ensuring the patient has appropriate support following their discharge from the breast care service. It says ‘patients with on-going problems will continue to be seen at the discretion of the treating clinician.’

29. On 5 August 2021 Mrs N called the breast clinic and spoke with a nurse. She was worried about a spot that she could feel inside the area of her ribs. She was due to attend a mammogram the next day. The nurse advised her to tell staff and if necessary ask for her personally to see if someone could examine her. The nurse noted ‘for rapid appointment 19 August.’ They noted Mrs N ‘can feel something in her right side.’ The mammogram then seems to have taken place on 11 August.

30. Mrs N attended the appointment on 19 August 2021. She explained to a nurse that she felt a lumpy area on her right chest which had been present for around two weeks. She felt she had similar areas on her inner thighs. The nurse reviewed the mammogram image and considered there were normal appearances with no significant changes since the last images.

31. Mrs N called the breast clinic again on 8 September 2021. She was worried about a bruise on her lip. She asked whether it was linked to her medication. The nurse said they reassured her and advised her to see a pharmacist. They noted she had a face to face Moving Forward appointment planned for 23 September and advised Mrs N to mention it then if necessary.

32. Mrs N attended an appointment at the breast clinic on 23 September 2021. A doctor examined her and noted some mild changes to the lower part of her right breast. The doctor said the changes were due to radiotherapy and would hopefully settle. A nurse completed a treatment summary and holistic needs assessment for Mrs N. They gave Mrs N a Moving Forward booklet and advised her to call the breast care nurses if she had any concerns in future. Mammograms were booked for each of the next five years. The nurse confirmed Ms A had now discharged Mrs N from her follow up clinic.

33. On 8 November 2021 the breast cancer support team confirmed in writing they had discharged Mrs N to ‘supported self-management and remote surveillance of breast cancer.’

34. On 22 February 2022 Mrs N phoned one of the nurses at the breast clinic. She said there were spots or lumps on her breast, and she was worried about them. She said she was too anxious to wait until August for her next mammogram. The nurse agreed to make a rapid referral.

35. Mrs N attended the appointment following the rapid referral on 21 March 2022. A nurse examined her and had no concerns. They offered an option for Mrs N to see a psychologist, which she accepted.

36. The First Surgical Adviser told us there are no specific mandatory standards that the clinical team must follow when breast cancer patients reattend with concerns. But the breast care team should put the interests of the patient first, take any concerns seriously, recognise ‘red flag’ complaints and arrange appropriate investigations or further management when necessary.

37. The Trust uses the Moving Forward Programme as set out in the Trust Policy. This is an Open Access pathway. It involves not having regular face-to-face clinical appointments and physical examinations for all treated cancer patients. Instead, clinicians rely on mammograms and symptoms reported by patients to try and minimise ‘unnecessary’ encounters. The aim is to allow for a more patient-led and patient-centred approach.

38. The First Surgical Adviser said in most breast care units the emphasis is on risk stratification. This means the patient with the lowest risks of disease are spared the inconvenience of regular follow-up appointments. This is time consuming for patients and costly for the units. Such low-risk patients are usually suitable for annual imaging and clinical encounters resulting from either those scans or concerns the patients raise. At the other end of the spectrum are the highest risk patients, such as Mrs N.

39. The Nursing Adviser questioned whether it was appropriate to discharge Mrs N given her high recurrence risk. They said the Trust’s Moving Forward programme said it was for ‘non-metastatic’ patients, but it was unclear what this meant.

40. The First Surgical Adviser’s view is that clinicians should not have put Mrs N on the Moving Forward programme. She had a high volume of chemotherapy resistant disease, particularly in her axillary lymph nodes. There should have been a low threshold for her being investigated when she reported symptoms.

41. The First Surgical Adviser said regular clinic appointments can be helpful in giving patients the opportunity to describe any symptoms. Experienced clinicians can then recognise the presence of any subtle symptoms of recurrent cancer. Any patients reporting symptoms should be escalated for a clinical review and investigated with imaging where appropriate.

42. The record of the phone call of 5 August 2021 showed Mrs N was anxious about changes in her breast. The Nursing Adviser said the nurse should not have left it to Mrs N to raise concerns with clinicians and should have escalated concerns to a breast surgeon or oncologist. Instead, they arranged a follow up appointment in two weeks. This was not responsive enough to Mrs N’s concerns. The Nursing Adviser said, in their experience, any patient raising suspicions of metastatic disease should see a surgeon or oncologist. The Nursing Adviser did not consider what happened was in line with the NMC Code.

43. At the appointment on 19 August 2021 Mrs N again raised concerns about changes to her breast. The Nursing Adviser told us there was an appropriate clinical examination along with review of a mammogram and ultrasound scan. But a repeat CT scan may have been beneficial in assessing Mrs N’s chest wall to investigate the concerns about the lumpy area and the spot around the rib area. The scan would also have enabled a review of the known nodules in the lungs to see if there were any changes.

44. The Nursing Adviser said the examination and reassurance given to Mrs N on 23 September 2021 was in line with the Trust’s Policy. The previous issue with bruising around the lip was not mentioned and so had presumably resolved. By this stage Mrs N had called with concerns and attended clinics where she needed reassurance. The Nursing Adviser said it would have been prudent to organise a CT scan before deciding to discharge her into the open access pathway. The Nursing Adviser said the details of the appointment were brief and documentation was not appropriate.

45. The doctor who examined Mrs N on 23 September 2021 did not make any detailed record. We only know the doctor saw Mrs N from the notes the breast care nurse made. This simply stated the doctor examined Mrs N and advised that the skin changes were related to radiotherapy.

46. On 22 February 2022 the Nursing Adviser said the breast care nurses should have arranged a face-to-face review with a breast surgeon or oncologist. It seems the action taken was to arrange a ‘rapid’ review, but that only took place four weeks later. This should have happened much sooner.

47. The Nursing Adviser was concerned about the lack of detail in the documentation relating to the clinic examination Mrs N had on 21 March 2022. This was another opportunity for carrying out a CT scan that, in their view, was missed.

48. The Nursing Adviser noted there were frequent references in the clinical records to Mrs N’s anxiety. She was ruminating about recurrent cancer. Such a high level of anxiety would often be considered a factor to consider when clinicians are considering the correct pathway for patients who have been treated for breast cancer.

49. The Nursing Adviser said the records show that, at times, nurses listened to Mrs N and acted on her concerns. But, they said, more could have been done to address her psychological needs and to treat her as an individual. The follow up appointments were insufficient to address her anxiety and the high risk of disease she had.

50. We asked the Trust to explain why Mrs N was not offered re-staging investigations given that she had a high risk of recurrent cancer. The Trust said re-staging is only carried out for specific high-risk symptoms or signs. It said it was not its policy to arrange re-staging investigations unless they have these symptoms or signs. It added that previous high-risk disease would not be routinely considered as an indication in its own right. It said Mrs N ‘always’ described more general symptoms, such as malaise, which are also more common after chemotherapy.

51. The Oncology Adviser agreed with the Trust. They said anxiety would not be a good enough reason for the breast care to arrange a scan. They said investigations would be based on symptoms even for patients who were at high risk of recurrent disease.

52. The NICE Guideline states that follow up imaging for patients should be mammograms and no other form of imaging is recommended. The Oncology Adviser told us the Trust Policy fits in with the NICE Guideline. They said there is no survival benefit from intensive imaging follow-up aimed at detecting metastatic cancer in patients who do not have symptoms to suggest cancer had spread.

53. The Oncology Adviser said Mrs N described symptoms that would not have made the breast care team concerned about distant metastases. She described lumps in the chest wall and clinicians arranged an ultrasound scan as a result. There was no reason for a full body scan based on what Mrs N presented with. It is standard practice for clinical teams to discharge breast cancer patients to schemes reliant on patients following up concerns, such as the Trust Policy.

54. The First Surgical Adviser did not agree with the Trust’s view or the Oncology Adviser. They said Mrs N had a high-risk disease and had reached a sufficient threshold to warrant further investigation with re-staging scans. Unfortunately, the earliest signs of metastatic disease are notoriously vague and in high-risk cases these signs should not simply be attributed to the impact of treatment. In their view it is not appropriate to wait for classic ‘red flag’ symptoms to emerge. Non-specific symptoms such as general malaise should be monitored carefully for patients like Mrs N. The First Surgical Adviser said there appears to have been no significant escalation of her clinical and imaging assessments during follow-up, which does not appear to be ‘patient centred.’

55. The First Surgical Adviser highlighted the Trust stating Mrs N ‘always’ described malaise, which suggests the symptoms were persistent and needed to be investigated. But the symptoms she described were more than ‘malaise.’ She specifically referred to lumps and sensations in the area of her breasts.

56. The First Surgical Adviser was concerned about the Trust Policy. They said there seems to be no stratification based on patient risk. In fact, it would seem most patients are put on the Moving Forward programme regardless of the predicted risk. This is not in the interests of high-risk patients such as Mrs N. The First Surgical Adviser said it is a concern if patients like Mrs N are continuing to be placed onto the Moving Forward programme.

57. The Second Surgical Adviser told us it is clear that Mrs N was examined and treated appropriately by experienced clinicians when she attended clinic appointments in August and September 2021. They said she did not have any symptoms that would warrant a CT scan.

58. The Second Surgical Adviser said the situation was different by February 2022. There was a delay in breast care nurses seeing Mrs N from 22 February to 21 March. Mrs N had multiple worries about lumps in her breasts and was described as very nervous and anxious.

59. The Second Surgical Adviser said, in this context it was their opinion that a CT scan should have been arranged. But this would be a subjective decision based on clinical opinion and not on any standards or guidelines. It is not unusual for patients taking the medication Mrs N was to feel unwell and for people to be anxious and worried about cancer returning. She did not have any ‘red flag’ symptoms.

60. There is a clear difference of opinion between our advisers about whether the breast care team should have taken further action when Mrs N made contact about her symptoms and concerns. There is no specific national guidance that would mandate further action based on Mrs N’s contacts with the service during the period in question. This means we cannot say that doctors failed to carry out adequate investigations or to arrange appropriate investigations as expected in Good Medical Practice. Neither can we say that nurses failed to act effectively in line with the NMC Code. The breast care team followed the NICE Guideline and the Trust Policy.

61. Ideally, the breast care nurses should have discussed Mrs N’s symptoms with a doctor, as explained by the Nursing Adviser. But from what the Oncology Adviser has told us, a doctor following the Trust Policy and the NICE Guideline would not have arranged for any further scans. We cannot say this amounted to a failing.

62. We find that clinicians did not fall below the relevant standards when responding to contacts from Mrs N between August 2021 and March 2022. We appreciate there is a range of clinical opinion about this aspect of Mr N’s complaint. It is understandable that this will feel unsatisfactory to Mr N and his family. We hope we have clearly explained why we have reached this decision.

1. Mr N complains about how the breast care team at the Trust monitored and reviewed his wife after breast surgery in March 2021. We can see how devastating these events have been for Mr N and his family. We offer our sincere condolences to them for their loss.

2. Mr N’s complaint is complicated and there is little national guidance that applies specifically to his wife’s circumstances. We have seen no evidence the breast care team fell below the relevant standards. We do not uphold Mr N’s complaint.