20 May 2020
- Thousands of secondary breast cancer patients experiencing anxiety and fears that their lives may be shortened due to changes to treatment, scans and trials, leading UK charity warns following new survey and “unparalleled” levels of distress in calls to its Helpline
- Breast Cancer Now calls for the “often forgotten” needs of patients with incurable cancer to be recognised and addressed in Government cancer catch-up strategies, to ensure thousands of people do not miss out on precious time with their loved ones
Thousands of women with incurable breast cancer are experiencing significant fears for their ongoing survival amid delays to treatment, scans and access to trials during the coronavirus outbreak, the UK’s leading breast cancer charity has warned.
As the NHS continues to take extensive steps to keep cancer services running, Breast Cancer Now said through its Helpline and insight work it was hearing substantial evidence of impacts across breast cancer services, with secondary breast cancer patients in particular reporting concerns they may die sooner due to changes to their care or the suspension of clinical trials.
A new survey of over 580 people affected by breast cancer in the UK1 by the charity found that a significant number of secondary breast cancer patients were seeing their chemotherapy or targeted therapy changed or paused temporarily to boost their immune systems, leading to periods of weeks or potentially months without treatments that had been helping to keep their disease stable.
While many patients reported that their treatment and care had been unaffected, others had seen monitoring scans delayed by up to three months, leaving them uncertain as to whether their current treatment may be working or whether their cancer may be progressing.
In total, of 190 respondents living with incurable secondary breast cancer, nearly a quarter (24%) had seen delays or cancellations to their potentially life-extending treatment – with a further 10% having their monitoring scans delayed or cancelled.
Breast Cancer Now stressed that for many, changes or short delays to treatment were unlikely to lead to significant long-term impacts, and praised the efforts of NHS clinicians, researchers and experts worldwide in developing rapid protocols to guide treatment decisions during the pandemic.
But the charity said that the levels of distress, anxiety and fear it was hearing on its Helpline were “unparalleled” in recent years, and urged for the needs of patients living with advanced cancers to be recognised and addressed as plans to restore NHS services are developed ― to ensure thousands of people do not miss out on precious time with their loved ones.
Breast Cancer Now today called on UK Governments and NHS bodies to set out clear plans ― as part of cancer catch-up strategies ― to ensure everyone living with secondary breast cancer can safely receive the treatment and care they need as soon as possible as covid-free hubs or sites.
The charity today estimated that “thousands” were experiencing anxiety that the pandemic may see them miss on out on time to live as a result of changes to their care or the suspension of trials ― but said it was impossible to give an accurate figure of those affected, as the number diagnosed with secondary breast cancer was still not routinely recorded across the UK, despite years of campaigning.
Breast cancer is the UK’s most common cancer, with around 55,000 women and 370 men diagnosed each year2. Despite decades of progress, around 11,500 women still die from breast cancer each year in the UK3, with almost all of these deaths caused by secondary breast cancer ― where the disease has spread to another part of the body, such as the bones, liver, lungs or brain.
While secondary breast cancer can be controlled for some time, it currently cannot be cured and patients stay on treatment for the rest of their lives. It is estimated that around 35,000 people in the UK are living with secondary breast cancer4.
Throughout the coronavirus pandemic, NHS and other professional bodies have worked to develop advice for local services and rapid clinical guidance to help protect cancer patients from the virus and minimise any disruption to the services and treatment they need.
Some cancer treatments and services have therefore been changed, paused or delayed to help protect cancer patients, boost patients’ immune systems, or as the NHS tries to cope with the current demand during the outbreak.
While it is currently unclear what specific data are being collected on the number of patients having their cancer treatment changed or delayed, NHS England has suggested that chemotherapy delivery (all cancers), for example, has been continuing at on average around 70% of normal levels5.
The extent of the specific impacts for breast cancer patients across the UK, including the length of any delays to treatments or services, is yet to be established and it may therefore be some time before any long-term effects of the outbreak for breast cancer patients are known.
In a new qualitative survey by Breast Cancer Now of 580 people affected by primary or secondary breast cancer, many respondents reported that they or their loved ones were experiencing impacts to their treatment, including cancelled surgeries, reduced or delayed therapy or difficulties in access drugs including hormone therapy.
Around 17% of all respondents reported cancellations or delays to their treatment, with those living with secondary breast cancer being more likely to cite issues around delays or cancellation to treatments than those with primary breast cancer.
However, the survey also highlighted that, for many, cancer treatments and services were continuing unaffected, with nearly 15% of all respondents reporting no changes to their treatment and care.
The findings also suggested that some people who had received treatment for primary breast cancer were experiencing delays to follow-up scans. Breast Cancer Now warned that, unless addressed as soon as possible, these impacts ― in addition to the sharp drop in referrals for suspected cancer reported by NHS bodies in April ― could lead to many more cancers (including the return or spread of the disease) being detected later, where they may be less treatable.
Through its Helpline, online support services and networks and insight work, Breast Cancer Now also warned that some patients were reporting extreme concerns at being denied the hope provided by trials of new cancer drugs, with many clinical trials being paused due to the risk of infection or the redeployment of NHS staff.
The charity highlighted that access to experimental treatments through clinical trials offered significant hope to secondary breast cancer patients amid the potential to extend or improve their lives, and urged for clear plans to be set out to reinstate clinical studies once it was safe and feasible to do so.
Breast Cancer Now seen a huge surge in enquiries to its online Ask Our Nurses service with questions and concerns about coronavirus, with a 60% increase in March 2020. Since the outbreak began, the charity has received over 2,700 enquiries to its Helpline and Ask Our Nurses service in total, with almost half of enquiries being about the impacts of COVID-19.
The pandemic has also seen hundreds of women with secondary breast cancer miss out on the support services they need. Breast Cancer Now took the difficult decision to suspend its face-to-face services until at least June 2020 in line with Government guidance, including 37 Living with Secondary Breast Cancer services across the UK.
The charity is currently piloting an online Living With Secondary Breast Cancer programme, ahead of launching the new digital alternative next month, to help ensure women with secondary breast cancer continue to receive the information and support they need.
Baroness Delyth Morgan, Chief Executive at Breast Cancer Now, the research and care charity, said:
“It’s extremely concerning to hear of the huge emotional impact the outbreak is having on so many people living with secondary breast cancer. Many women are experiencing or fearing considerable changes to their care, and the level of anxiety, distress and fear that we’ve been hearing on our Helpline is unparalleled in recent years.
“Living with incurable breast cancer can be difficult enough, but to add the extreme uncertainty of having to pause treatments that may be prolonging your life or potentially not being able to access the next treatment or trial you’ve been relying on is utterly distressing.
“NHS clinicians, researchers and experts worldwide have worked rapidly to develop new protocols to guide treatment decisions during the pandemic, and we hope that for many, changes or short delays to treatment are unlikely to lead to significant long-term impacts.
“But we cannot now abandon those living with secondary breast cancer at the time they need support, action and hope the most. As cancer catch-up strategies for the next stage of the pandemic are developed, it is essential that the often-forgotten needs of patients with incurable cancer are recognised and addressed.
“We call on UK Governments and NHS bodies to set out clear plans to ensure everyone living with secondary breast cancer can safely receive the treatment and care they need as soon as possible at covid-free hubs or sites. Without clear plans to restore treatment, services and trials as soon as it is safe and feasible to do so, thousands of people could miss out on precious extra time with their loved ones, which would be absolutely heart-breaking.
“Access to experimental drugs through clinical trials offers such precious hope of life-extension to many living with secondary breast cancer, and the current pause in recruitment to trials will be terrifying. With trials depending on significant numbers of NHS staff and infrastructure, we need UK Governments to set out clear plans to ensure they can resume as soon as it is safe and feasible to do so – not only to restore hope for thousands but to ensure vital research progress does not stall.
“Anyone concerned about their breast cancer treatment can call our free Helpline on 0808 800 6000 – our nurses are just at the end of the phone.”
Professor Mark Beresford, Consultant Clinical Oncologist and Clinical Lead at the Royal United Hospitals Bath NHS Foundation Trust and Co-Chair of the UK Breast Cancer Group, a forum of over 200 medical and clinical oncologists, said:
“For those undergoing cancer treatment, it is now more important than ever to carefully consider the balance between benefit and risk, including taking into account any extra hospital visits and the potential of more severe complications from coronavirus infections.
“For many, continuing treatment will still be the right thing to do, but for others a pause in treatment may be best. We know these can be really difficult decisions to make, but your oncology team is there to support you in making the right choice for you.
“The pandemic has also forced some changes and innovations to the way we work which we hope will continue to benefit patients in the future, including reducing the number of visits for radiotherapy, the home delivery of cancer drugs and offering telephone and video follow-up clinics."
Dr Andreas Makris, Consultant Clinical Oncologist at Mount Vernon Cancer Centre (East and North Hertfordshire NHS Trust) and Co-Chair of the UK Breast Cancer Group, said:
“The COVID pandemic has had a major impact on healthcare services, leading to changes in delivery to create capacity to treat patients with COVID but also to protect other patients from the risk of contracting coronavirus. For some patients with breast cancer, this has meant changes to anticancer treatments following national guidelines and individual assessments of the current balance of risk and benefit for them.
“But a major consequence of this is the increased anxiety that patients are feeling that the changes to their treatment may lead to worse outcomes for them. It is so important that doctors, nurses and other healthcare professionals are aware of this increased anxiety when they interact with their patients in the coming weeks.
“Several ongoing projects have been recording the changes in patients’ treatment during the pandemic, to help us understand any impacts including the perceived impacts of these changes on outcomes. Across the country, there is now an effort to return services to pre-COVID levels and to restart anticancer treatments where they have been delayed, which we hope will be reassuring to many.”
Joanne Addis, 54 from Stockport, was diagnosed with secondary breast cancer after being admitted to hospital in April 2017, only weeks after surgery for primary breast cancer. In April, Joanne’s palbociclib treatment, which with letrozole has kept her cancer stable three years, was paused for three months. She said:
“I wasn’t very happy to be told my palbociclib treatment, which has kept my cancer stable for three years, would be stopped. I try not to think about what will happen over the next two months, but I do worry about what my scan in June will show. If my disease were to progress, I’d feel like I had wasted a treatment option and the time it could have given me. Striking off such a valuable treatment not because of my cancer becoming unresponsive, but because of the risk of the virus, doesn’t seem fair.
“I ended up in hospital soon after I came off palbociclib as pain in my right hip became so severe that I couldn’t walk, which felt like too much of a coincidence at the time. Thankfully, no cancer progression was found, but I do really worry what may happen if the risk of coronavirus continues and I need to stay off the treatment for even longer. Everything just feels so out of my control at the moment, which is really difficult.
“There are a lot of people like me who’ve had to pause their cancer treatment and not all of us will have good results at the end of this. I’m just hoping that the risk of coronavirus drops low enough soon so that I can restart my treatment.”
Karen Hilton, 48, from Dalkeith in Scotland, was diagnosed with secondary breast cancer in September 2018 after noticing lumps in her collarbone. Karen had first been diagnosed with triple negative primary breast cancer with a faulty BRCA1 gene in May 2016, followed by another primary breast cancer in August 2017. Karen and her partner of 10 years, Alistair, were due to get married in April, but had to cancel their wedding due to lockdown. Karen is concerned about the lack of clinical trials during the coronavirus outbreak. She said:
“Treatment worked very effectively originally, but the cancer seems to work its way around and come back again. Unfortunately, I only have so many options left, and those options include trials for new treatments. They could be the thing that keep me alive but at the moment due to COVID-19 I’m not getting access and I don’t know how long it’s going to take for clinical trials to come back on to the table. I want to see my son grow up and it’s heart-breaking to think that might not happen.
“I’ve been on my current treatment for a few weeks now, but the chemotherapy I’m on could compromise my blood count and if it drops too low, I may have to stop. It’s all very down to the wire.
“At a time in my life that I want to be going out and working my way through my bucket list and all my travel plans, I can’t. I can’t even go for a coffee with a friend. It’s really tough for me and my family. While it’s a frightening situation that I’m living with this cancer, I’m also living with hope that I will get the treatment I need.”
Shakun Banfield, 81, from Bromley was first diagnosed with primary breast cancer in 1992 and then again in 2013. She was diagnosed with secondary breast cancer in her lungs in early 2019 after experiencing breathlessness and tightness across her chest. Shakun has been taking palbociclib and letrozole for 16 months, which has controlled the growth of the tumours. During her last telephone discussion with the consultant, she was informed that patients were being taken off palbociclib due to the risk of coronavirus. She says:
"I was surprised when my consultant told me that their patients on palbociclib were being asked to come off it for a month to help boost our immune systems. It was difficult for me to consider letting go of medication which was helping to control incurable cancer.
“I felt disempowered and whilst valuing my consultant's advice, before agreeing felt I had to weigh up the pros and cons, before making a decision myself. My consultant was very understanding. It was indeed a hard decision to make, whether to continue with palbociclib and keep the tumours controlled or have a break from it to keep the virus at bay. While I've decided to pause this medication for two months until my next scan, I still worry about the effect and imagine the worst. It seems that there is a lot of uncertainty about exactly what will happen or change with cancer treatments even day to day.
“As well as incurable secondary breast cancer, this virus is now another major threat. Having cancer in my lungs makes me feel like there is an arrow pointing at the weakest part of my body. As well as being labelled as a cancer patient, I am also being shielded, hiding myself away for months as I’m ‘clinically extremely vulnerable’. It is incredibly daunting to think about the future and how long this will continue.”
Notes to Editors:
- Breast Cancer Now’s survey was open from 7 April – 5 May and promoted via the charity’s networks and social media channels. The survey questions were open-ended and thematic analysis was used to identify core themes of the responses. Of 580 respondents, approximately 33% were living with secondary breast cancer, 56% were primary breast cancer patients and 11% were others affected by or with an interest in breast cancer, including friends and carers.
- Average total of UK invasive breast cancer cases between 2014 and 2016. (England - Cancer registration statistics, England. Office for National Statistics. Scotland - Cancer statistics, breast cancer. Information Services Division, NHS National Services Scotland. Wales - Breast Cancer, Welsh Surveillance and Intelligence Unit. Northern Ireland - Northern Ireland Cancer Registry, breast cancer).
- An estimated 11,500 deaths from breast cancer based on average mortality figures for each nation using 2015–17 data. (England and Wales - Death registrations summary tables, England and Wales 2017. Office for National Statistics. Scotland - Cancer statistics, breast cancer. Information Services Division, NHS National Services Scotland. Northern Ireland - Northern Ireland Registrar General Annual Report 2017 Cause of Death).
- Yip, K., McConnell, H., Alonzi, R., & Maher, J. (2015). Using routinely collected data to stratify prostate cancer patients into phases of care in the United Kingdom: implications for resource allocation and the cancer survivorship programme. British Journal of Cancer, 112, 1594–1602
- Cally Palmer, Health and Social Care Committee Oral Evidence Session, 1st May 2020.