Your voices help us ensure COVID-19 lessons are learned

BCNA has heard from many women, men and families over the past several months about the impact of the COVID-19 pandemic on your lives. We know it has caused increased stress and anxiety for many people, and that for those currently undergoing treatment there may have been changes to your appointments and sometimes the treatments you have received.

After the initial outbreak of coronavirus around the country earlier this year, BCNA decided to survey our members to try to better understand how you were affected.

Our survey was open for two weeks from 22 June to 6 July (before the second wave of cases in Victoria). More than 2,300 people participated. If you are one of them, thank you for contributing to this important piece of research.

We are using the survey results, and therefore your voices, to help us in our work to ensure that breast cancer treatment and care continues to be offered in line with the breast cancer Optimal Care Pathway, and that lessons are learned on how to best deliver care in such difficult circumstances.

In particular we will be focusing our efforts on two key findings form the survey: delays to breast reconstruction surgery and the experiences of people using telehealth for their breast cancer appointments.

Breast reconstruction

We are particularly concerned about the impact of government bans on elective surgery, including breast reconstruction surgery, during coronavirus peak periods. We have heard from breast cancer surgeons that bans on elective surgery have meant that many women were not able to have immediate reconstruction as part of their breast cancer surgery. This was reflected in our survey, with 39 per cent of women wanting a breast reconstruction at the time of their cancer surgery not able to have it (110 women). We can assume that this number is now higher, as elective surgery was again banned during Victoria’s extended period of lockdown from August to October.

Bans to elective surgery have resulted in a backlog of surgeries, which may further delay access to breast reconstruction. We will be monitoring waiting times around the country, and would love to hear from you if you find you have a long wait for your reconstruction.

Telehealth

Another area of interest in our survey was telehealth services. While many people had very positive experiences with telehealth consultations, there were some clear areas where improvement is needed to make these better for patients. We will be working with health services and governments to encourage the following:

  • greater use of video (instead of phone) telehealth consultations
  • ensuring patients do not feel rushed and that complex issues are not explored in telehealth consultations
  • providing in-person appointments when someone is newly diagnosed, meets their treating team for the first time or where a physical examination is required
  • communication skills training to help doctors improve their telehealth consultations
  • better support for patients who have trouble with the technology
  • more research into patient experiences with telehealth to improve services.

Other priorities

Other actions that BCNA will be taking over the coming months include:

  • encouraging people to continue their regular screening mammograms and encouraging anyone with a change in their breast or other new symptom to see their doctor
  • ensuring people with breast cancer continue to have access to allied health services, such as physiotherapy and lymphoedema therapy, and mental health services.

Survey results

The survey found that the COVID-19 pandemic affected all aspects of breast cancer care, including diagnosis, treatment, follow-up care and supportive care.

Changes commonly discussed by survey participants included:

  • the use of telehealth for consultations with cancer specialists, breast care nurses and GPs
  • restrictions on family members or other support people being able to attend consultations or treatment sessions
  • restrictions on hospital visitors
  • new procedures at hospitals and clinics aimed at infection control.

‘Didn’t meet face to face with most of my team, medical oncologist, plastic [reconstruction] surgeon due to COVID-19. Had phone calls and sent photos.’ – survey respondent

More substantial delays and changes reported included:

  • delays in being diagnosed due to the closure of screening services, or delays receiving tests and scans to investigate symptoms.

‘BreastScreen bus not coming to perform routine tests, which delayed my findings.’ – survey respondent

  • changes to the type of breast cancer surgery performed to reduce the time the patient needed to stay in hospital or to avoid post-surgery treatments such as radiotherapy and chemotherapy.

‘A full mastectomy was performed to avoid radiation and additional hospital visits, however a double mastectomy was not possible during COVID.’ – survey respondent

 ‘My hospital stays with each surgery with shortened because of COVID. Sent home 24 hours after major surgery. Awful!’ – survey respondent

 delays to breast reconstruction surgery

 ‘Unable to offer immediate reconstruction due to COVID-19.’ – survey respondent

  • changes to treatment plans

‘Radiotherapy was delayed for six months. Began hormone-blocking therapy prior to radiotherapy.’ – survey respondent

‘Post surgery I was given all the facts by my surgeon and oncologist and, due to COVID-19, we all agreed that chemotherapy was more of a risk for very little gain.’ survey respondent

  • delays and changes to clinical trials.

The survey also found a significant impact on follow-up care and survivorship care. Six hundred people reported delays or changes to follow-up care appointments, and 456 reported changes or delays to allied health services including exercise physiology, lymphoedema therapy, physiotherapy, group exercise programs and nutrition support.

‘Physiotherapy delayed due to concerns around COVID-19. Plans to see exercise physiologist and re-engage with breast cancer rehab program delayed as program was ceased during COVID-19. Plans to utilise gym/class/pool membership delayed due to centre closure and restrictions during COVID-19.’ – survey respondent

The use of telehealth

A commonly reported change was the use of telehealth for appointments, with 1,433 people having at least one telehealth appointment, mostly by telephone.

When asked if telehealth had been helpful, 775 said it had been, discussing benefits such as minimising the risk of being exposed to coronavirus, the convenience of being able to have the appointment from home, and that telehealth allowed treatment and care to continue during the pandemic.

Another 410 said they found it helpful but had some sort of challenge with it, such as:

  • not feeling comfortable lifting up their top
  • appointments that felt rushed, short and less personal
  • difficulties explaining complex health issues over the phone
  • problems with technology
  • difficulty finding a private space at home for the appointment.

‘I found it difficult to discuss my concerns over the phone. I had questions about post-surgery pain and post-surgery scar puckering.’ – survey respondent

The emotional impact

Worryingly, more than half of all respondents (1,639) reported some degree of anxiety about the impact of the pandemic on their care. Key concerns included:

  • the impact of breast cancer treatment on their immune system
  • worry about potential delays to treatment and care
  • not being physically examined by doctors due to the shift to telehealth appointments
  • contracting coronavirus while attending health services
  • the lack of a support person at appointments or when receiving treatment
  • the closure of allied health services and other supports.

‘It has been a difficult experience finding out that I have cancer and it is compounded by the fact that I live on my own. My family, friends and I have all been in isolation. Distractions with social engagements, shopping, etc. have not been happening and even food shopping for myself initially was somewhat challenging.’ – survey respondent

BCNA will continue to investigate the ongoing impacts of the COVID-19 pandemic on Australians with breast cancer. If there is anything you would like to share with us, please email us at contact@nullbcna.org.au.

Issue 87
Spring 2020