BCNA News 08 Oct 2020
The impact of COVID-19 on people living with breast cancer
Early findings of a new survey reveal the true personal impact of COVID-19 on breast cancer patients, with thousands disclosing surgical delays and changes to treatment, as well as limited access to follow up care and feelings of isolation and loneliness.
Breast Cancer Network Australia (BCNA), Australia’s leading breast cancer consumer organisation, fears breast cancer patients will face long wait times for breast reconstruction surgery, largely as a result of state and territory government bans on elective surgeries during the pandemic.
Following the first outbreak of COVID-19 in March 2020, BCNA conducted a national survey with over 2,300 Australians who had been diagnosed with breast cancer.
The survey found more than 39 per cent of the women who responded saying they wanted breast reconstruction surgery were unable to have it at the time they wanted it due to COVID-related restrictions on surgeries.
BCNA CEO Kirsten Pilatti says state and territory governments need to consider the investment that is required to deal with the surgical backlog.
“Our greatest concern is for breast reconstruction. Reconstruction post breast cancer is classified as category three elective surgery and was therefore stopped during the lockdown. We know that many states and territories also stopped their surgeons from completing immediate reconstructions,” Ms Pilatti says.
“We have seen first-hand the impact of long delays in breast reconstruction surgery. We are worried these results will take us back 20 years to a time when women were forced to wait more than five years to have their breast reconstruction. We know that reconstruction delays have long term physical and emotional impacts for women, their personal relationships and their self-esteem.”
Twelve months ago, Amy, 34, was told that she had a 70 per cent chance of developing breast cancer. She elected to have a preventative double mastectomy and breast reconstruction and is still waiting for this surgery.
“Last September when it was discovered that I carried a BRCA2 gene mutation, I was told there would be an 18 month wait in the public system. I finally had an appointment booked with my plastic surgeon for June this year, but that was cancelled due to COVID-19. With my family history I can’t afford to wait, but because my surgery is considered a category 3 elective surgery, I have no choice.”
BCNA’s survey, the largest consumer survey on the personal impact of COVID-19 on cancer patients, also highlighted that breast cancer patients were left feeling isolated and alone, with an overwhelming 56 per cent of those responding to the question about mental wellbeing reporting some level of anxiety about the impact of COVID-19 on their breast cancer care.
Karen, 61, says one of the most difficult things for her has been the inability to bring a family member to appointments to support her throughout her experience.
“To come in on my own and receive the news I had an aggressive cancer was just devastating. I feel that my journey has been made so much harder as it’s been so isolating and confronting.”
Survey respondents discussed a range of fears including susceptibility to COVID-19, access and delays to treatment, fewer options to services, lack of access to physical examination due to telehealth appointments, social isolation and lack of emotional support during treatment due to restrictions on visitors.
“We are also concerned that over 50 per cent of people accessing allied health services during this time reported challenges. These include psychologists, physiotherapists and other services that help women and men deal with the physical and emotional side effects of a breast cancer diagnosis,” Ms Pilatti said.
BCNA is calling on the State Governments to ensure, as they prepare their health care systems for post COVID-19, that they consider the investment that is required to deal with the surgical backlogs, manage the emotional risks and ensure that the Breast Cancer Optimal Care pathway is followed for all breast cancer patients.
Kirsten Pilatti says BCNA represents more than 120,000 Australians affected by breast cancer.
"We know that there is already a significant disparity of care across Australia, and we do not want this to widen as we manage the challenges of the pandemic,” she says.
“We bring to the table the true patient experience. We know we can use this survey to help those who will be diagnosed tomorrow and ensure every woman and man receive the best care, treatment and support.
“Our message to those living with breast cancer – please continue your follow up care and reach out for help. You are not alone."
The survey findings come as Bakers Delight launches its annual Pink Bun campaign to raise funds for BCNA to continue to support Australians affected by breast cancer.
This year Australians can support the Pink Bun campaign by visiting their local Bakers Delight store before 28 October to purchase a Pink Bun or make a donation. This year, for the first time, there is also an opportunity to buy a Virtual Pink Bun online and send a message of support to family and friends to brighten their day and support Australians and their loved ones affected by breast cancer.