18 September 2020

 

  • Over 1,500 breast cancer patients in the UK are facing lengthy waits for reconstructive surgery as the backlog caused by the pandemic worsens pre-existing delays
  • Breast Cancer Now calls on NHS bodies across the UK to ensure that women get the surgery they need as soon as possible

Over one and a half thousand breast cancer patients in the UK could be facing “extremely upsetting” delays for reconstructive surgery of many months, possibly years, a leading charity has warned.

Breast Cancer Now today estimated that over 1,500 women had missed out on reconstructive surgery since NHS breast reconstruction services were suspended in March 2020 to help reduce risks to patients of lengthy operations or infection and as the NHS tried to cope with the demands of the pandemic.1

While not all women with breast cancer choose to have reconstruction, for those that do having to live with one breast, no breasts, or asymmetric breasts due to lengthy delays to surgery can cause great distress.

Through its Helpline and insight work, Breast Cancer Now said that patients affected by delays to reconstructive surgery were reporting significant emotional impacts, including damaged body confidence, anxiety and depression, at a time when face-to-face support from healthcare professionals and charities was not possible.

Since March, the backlog of breast reconstruction surgery due to the pandemic has added to already extensive waiting lists for delayed reconstruction, of up to two years in many hospitals, which will continue to grow in the months to come.2 In some areas, existing delays in accessing a specific type of reconstruction, using tissue from another part of the body, are also expected to worsen.      

With reconstruction services now beginning to resume, Breast Cancer Now today called on NHS bodies across the UK to ensure that patients get the surgery they need as soon as possible.

The charity also called for reassurances from the NHS that women waiting for delayed operations will not be forgotten or prevented from having surgery due to time restrictions, after a Breast Cancer Now report in 2018 revealed some Clinical Commissioning Groups (CCGs) in England were only funding reconstruction within a particular timeframe.3

Nearly one in three cancers diagnosed in women in the UK are breast cancers, with around 55,000 women and also 370 men diagnosed each year.4

Under normal circumstances, guidance recommends that all breast cancer patients requiring a mastectomy should be offered breast reconstruction, with the option of either having it immediately or delaying it until a later date.5

The surgery involves the creation of a new breast shape using an implant or tissue from another part of the body, usually the lower abdomen. There are different options available for breast reconstruction that will be tailored to each patient’s needs. It can often involve several operations for the best outcome possible.

It is estimated that 14,850 of the 55,000 women diagnosed with breast cancer each year in the UK undergo a mastectomy – with around 3,119 (21%) of these patients opting to have immediate breast reconstruction, and 1,485 (10%) having delayed reconstruction.6

While around 70% of women choose not to have breast reconstruction, with many opting to use a prosthesis or some deciding to live flat, for the considerable number of women who do, it is an essential part of their treatment and recovery.

Throughout the coronavirus pandemic, the NHS and 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.

During the pandemic, the majority of women diagnosed with breast cancer have been able to have surgery to remove their breast cancer.7 Some women with a certain type of breast cancer, oestrogen receptor positive, have been started on hormone therapy prior to surgery.

In the early stages of the coronavirus outbreak, the Association of Breast Surgery (ABS) recommended that immediate breast reconstruction for women having a mastectomy should be paused to help lessen the risks to patients of undergoing more complex, lengthy operations and reduce the time spent in hospital, limiting the potential of infection with coronavirus.8

Since reconstruction operations were paused in March, Breast Cancer Now estimates that over 1,500 women have missed out on the chance to have breast reconstruction following a mastectomy, including around 500 women expected to have delayed reconstruction and just over 1,000 women who would have had immediate reconstruction.

While guidance in June from the British Association of Plastic, Reconstructive and Aesthetic Surgeons (BAPRAS) set out plans for reconstruction services to be restarted, and some hospitals are now carrying out reconstruction, the majority of patients will not yet have had access.9

The backlog of breast reconstruction surgery due to the pandemic has added to already lengthy waiting lists for delayed reconstruction, of up to two years in many hospitals. These delays will continue to grow in the months to come until the service is fully resumed.

The surgery backlog will also worsen existing delays in some areas to accessing a type of breast reconstruction, known as ‘free-flap’ or autologous.

For those women who choose reconstructive surgery, delays to the operation can affect self-esteem, body image and sexuality after life-changing breast cancer treatment.

Restarting reconstructive surgery across the UK will depend on operating theatre capacity as the NHS copes with pressures from the backlog of cancer surgeries due to the pandemic and new safety measures to protect staff and patients will also limit the number of operations possible.

Breast Cancer Now today called on NHS bodies across the UK to ensure that breast cancer patients get the reconstructive surgery they need as soon as possible and in line with the new guidance.

The charity also called for reassurances from the NHS that any women having delayed reconstruction - through choice or the cancellation of reconstructive services during the pandemic – are not forgotten or prevented from having surgery. This comes after Breast Cancer Now’s 2018 report found that a significant number of CCGs in England had imposed restrictions for non-clinical reasons, including only funding reconstruction within a particular timeframe.

A survey by Breast Cancer Now of 580 people affected by primary or secondary breast cancer, published in May 2020,10 found that many respondents reported they were experiencing impacts to their treatment, including cancelled or delayed 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. 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.

Throughout the pandemic, Breast Cancer Now has 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 6,000 enquiries to its Helpline and Ask Our Nurses service in total, and its online patient information about coronavirus has been viewed over 170,000 times.

Baroness Delyth Morgan, Chief Executive at Breast Cancer Now, the research and care charity, said:

“We are deeply concerned by our finding that over 1,500 breast cancer patients may now face lengthy and extremely upsetting delays for reconstructive surgery. This will leave many women who want to have reconstruction living with one breast, no breasts, or asymmetric breasts for months, possibly even years.

“Reconstructive surgery is an essential part of recovery after breast cancer for those who choose it. Women with breast cancer have told us these delays are causing them huge anxiety, low self-esteem and damaged body confidence, and all at a time when the COVID-19 pandemic has denied them access to face-to-face support from healthcare professionals and charities.

“We are pleased that breast reconstruction services are starting up again, but until operations are fully resumed the COVID-19 backlog will only continue to grow, worsening already lengthy waiting lists.

“This is why we are calling on NHS bodies across the UK to ensure that all breast cancer patients get their reconstructive surgery as soon as possible, regardless of whether the delay has been through choice or cancelled surgeries. These women have already been through the challenge of breast cancer, exacerbated by not being able to access face-to-face support. We owe it to them to end their wait for reconstructive surgery that we know for so many is critical to their recovery."

“Anyone worried about delays to their breast reconstruction can speak to our expert nurses by calling our free Helpline on 0808 800 6000.”

Ruth Waters, President Elect of the British Association of Plastic, Reconstructive and Aesthetic Surgeons, said:

“Delays in access to reconstructive surgery for breast cancer patients are a major cause of concern. For those women who decide to undergo breast reconstruction, this is an extremely important part of their cancer treatment which can have a significant impact on their mental wellbeing and quality of life.

“During the peak of COVID-19, breast reconstruction was halted as staff and theatres responded to the crisis. We are now in a position where relatively few beds are needed for COVID-19 patients and most staff can return to their normal roles, however, we are finding that access to operating theatres remains very restricted.  We have developed protocols and procedures to enable elective surgery to be performed safely, but most units that normally perform breast reconstruction report that they are restricted to activity at 20–50% of pre-COVID-19 levels. This means we remain unable to provide a full service for women having mastectomies now, and those who were already on a waiting list have little hope of being given a date in the near future. 

“Sadly, the de-prioritisation of breast reconstruction is not a new issue. Even prior to COVID-19, women in the UK faced huge variation in access to these procedures, with inconsistent guidelines around timeframes and eligibility.

“The British Association for Plastic, Reconstructive and Aesthetic Surgeons has developed detailed guidance to enable hospitals to re-start reconstructive procedures and is urging the government to introduce extra measures to reduce the backlog for all surgical procedures as a matter of urgency.”

Dr Julie Doughty, President of the Association of Breast Surgery, said:

“This has been a very difficult and worrying time for patients with breast cancer. Since the start of Covid, the majority of women with breast cancer have been treated. However, breast reconstruction was halted during the peak of the coronavirus outbreak. This was necessary to reduce lengthy hospital stays and limit the chance of infection. Breast reconstruction is an essential part of breast cancer treatment for many women. ABS is keen to work with NHS bodies to ensure equitable and timely delivery of breast reconstruction throughout the UK and address the pre-existing backlog of women awaiting delayed breast reconstruction.”

Case studies:

Deputy headteacher Nadine Thomas is going through treatment for primary breast cancer for a second time. She was originally diagnosed in November 2013 and had chemotherapy, a lumpectomy and radiotherapy. Nadine was diagnosed again in January this year after the scar from her surgery hardened and started causing pain. The 50-year-old mother of two, who lives near Swansea, had a mastectomy during the pandemic without the planned reconstruction, and started chemotherapy at the start of May. She said:

“I was originally going to have chemotherapy first and then a mastectomy with an immediate reconstruction using tissue from the abdomen. However, my BMI was too high so the hope was I would lose a bit of weight and then go back. Then 24 hours before my chemo was due to start, I got a phone call saying it wasn’t going ahead due to the pandemic. That was a blow. Instead they said they would do the mastectomy first but weren’t sure when that would be.

“It’s been a rollercoaster as the plans were changing on practically a daily basis, with dates in two weeks, six weeks, six months, all suggested and then cancelled. I felt I was stuck in limbo with the cancer still inside me. When the plan changed again and I finally had a mastectomy, it was a shock. At that point there was no discussion of a reconstruction at all, that option was taken off the table. So while I’ve now had the mastectomy and the cancer has gone, which I am so grateful for, I couldn’t have reconstruction at the same time.

“I’m quite surprised about how distorted my body is after the surgery. It’s quite different to how I was expecting it to be even though I had seen photos online and I would have liked some counselling about the mastectomy. I’ve lost my confidence, I don’t know how to dress for my shape, I don’t feel like going out on my own and I just don’t feel have like I had any control over my treatment plan. Now I’m concerned that when this is all over there will be such a backlog of referrals for reconstruction there will be a big delay.”

Angela Evans, 58, a diagnostic radiographer, from Bolton, was diagnosed with breast cancer in August 2019 after routine screening. Angela had six rounds of chemotherapy and after planning for a skin sparing mastectomy and local DIEP reconstruction, disruption to surgery meant that Angela has only been able to have a mastectomy with no reconstruction. She said:

“In the middle of March, my consultant rang to say they were shutting down all reconstruction surgery. I was being referred back to the local hospital for a simple mastectomy and would have to reconsider reconstruction at some point in the future. It was incredibly upsetting. After having spent months researching surgery and seeing pictures of what I thought was the absolutely best reconstruction in my eyes, it was distressing to realise that now that opportunity for me was gone forever.

“Less than 48 hours before my mastectomy was due to go ahead, I got a call to say it wouldn’t be happening as they needed time to introduce a clean site and testing. I didn’t believe I was getting the surgery until I was going under the anaesthesia, which was two weeks later. I know I have much to be grateful for as my mastectomy was able to go ahead but I’m worried it could well be two years before I’m offered any reconstruction.

“I am very disappointed at being left with the asymmetry that I really wanted to avoid and I have no clear way forward. I feel even if I do get access eventually, I will always be thinking that it’s not the reconstruction I wanted. I will need to make my own decision that I can be at peace with.”

ENDS

For further information or to arrange an interview, please contact the Breast Cancer Now press office at press@breastcancernow.org or on 07436 107 914.

Notes to Editors:

1. In a normal four-month period there would be 4,952 women to have mastectomies, with just over 1000 (1040) having immediate reconstruction and around 500 (496) having delayed reconstruction. https://files.digital.nhs.uk/publicationimport/pub02xxx/pub02731/clin-audi-supp-prog-mast-brea-reco-2011-rep1.pdf

2. Re-establishing breast reconstruction services, BAPRAS http://www.bapras.org.uk/media-government/news-and-views/view/re-establishing-breast-reconstruction-services, 17 June, 2020

3. Rebuilding my body: Breast reconstruction in England, Breast Cancer Now, https://breastcancernow.org/sites/default/files/rebuilding_my_body_report_june_2018.pdf, June 2018

4. 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).

5. Early and locally advanced breast cancer: diagnosis and management, The National Institute for Health and Care Excellence (NICE), https://www.nice.org.uk/guidance/ng101/chapter/Recommendations#breast-reconstruction, July 2018

6. National Mastectomy and Breast Reconstruction Audit 2011, https://files.digital.nhs.uk/publicationimport/pub02xxx/pub02731/clin-audi-supp-prog-mast-brea-reco-2011-rep1.pdf

7. 15,263 people underwent surgery for breast cancer from March to July 2020, 73.1% of the level in 2019, NHS England and NHS Improvement.

8. Association of Breast Surgery (ABS) statement re COVID-19 (15 March 2020) and ABS statement (25 May 2020) https://associationofbreastsurgery.org.uk/for-members/covid-19-resources/

9. Re-establishing breast reconstruction services, British Association of Plastic Reconstructive and Aesthetic Surgeons (BAPRAS), https://www.bapras.org.uk/media-government/news-and-views/view/re-establishing-breast-reconstruction-services, June 2020, with statement of support from the ABS.

10. 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.

About Breast Cancer Now

Breast Cancer Now is the UK’s first comprehensive breast cancer charity, combining world-class research and life-changing care to build a complete view of breast cancer and make faster progress for everyone affected.

Steered by research and powered by care, Breast Cancer Now’s ambition is that, by 2050, everyone who develops breast cancer will live and be supported to live well.

Breast Cancer Now funds around a third of all breast cancer research in the UK. By working with almost 340 of the brightest minds in breast cancer research, the charity is helping discover how to prevent more cases, save more lives and enable more women to live well with the disease.

The charity’s award-winning information and services are there to make sure anyone diagnosed with breast cancer can get the support they need to live well with impacts of the disease. Anyone looking for support or information can call Breast Cancer Now’s free Helpline on 0808 800 6000.

Breast cancer is the UK’s most common cancer, with around 55,000 women and 370 men being diagnosed each year. An estimated 600,000 people in the UK are alive after a diagnosis of breast cancer, and one in seven women will develop the disease in their lifetime.

Despite decades of progress in research and care, around 11,500 women and 80 men still die from the disease every year in the UK, with hundreds of thousands more living with the devastating, long-term physical and emotional impacts of the disease.

Breast Cancer Now, the research and care charity, launched in October 2019, created by the merger of specialist support and information charity Breast Cancer Care and leading research charity Breast Cancer Now.

For more information on Breast Cancer Now’s work, visit breastcancernow.org or follow us on Twitter or on Facebook.