With one in seven women affected by breast cancer in their lifetime, there is new focus on the psychological impact of the disease, as Kathy Skantzos explains.

Gone are the days when caring for women with breast cancer, or managing their risk, was confined to a treatment plan of biopsies, surgery and drugs.

Now research is looking at not just the medical management of breast cancer, but also the psychosocial impacts of the disease, to improve the quality of life for patients and their families and that can include trying to understand why some women decide to opt out of the recommended medical treatment.

Locally, Breast Cancer Research Centre-WA’s current clinical trials include GLORIA – a phase 3 study of the Anti-Globo H Vaccine Adagloxad Simolenin in patients with early-stage breast cancer, and DESTINY – a phase 3 active-controlled study of trastuzumab deruxtecan versus trastuzumab emtansine in patients with high-risk primary breast cancer. 

But in addition to these trials, BCRC-WA has recently undertaken two new studies looking into the psychosocial impacts of a breast cancer diagnosis – the RAYS (Resilience in Adolescents and Young people) and PACE (Psychosocial Aspects of Choice in Early breast cancer) studies. 

BCRC-WA medical oncologist and researcher Dr Peter Lau

BCRC-WA medical oncologist and researcher Dr Peter Lau said the centre was proud of the breadth of clinical trials and studies that aim to understand the needs of patients and their families.

Generational impact

Previous BCRC-WA research confirmed high levels of distress in the children of women diagnosed with breast cancer. Among the top unmet needs shared by young people in the study included needing to know more about their mother’s diagnosis and issues around family functioning. 

The Resilience in Adolescents and Young people study (RAYS), which got under way last month, has been designed to understand more about the impact of a breast cancer diagnosis on family functioning and on the young offspring of the patient. 

“We’re seeing women in their 30s and 40s with young children and that’s not only a potentially devastating diagnosis for the woman but also her family in terms of how they adjust to the diagnosis,” Dr Lau explained.

A breast cancer diagnosis can cause disruption in the family unit when the mother has to undergo surgery or chemotherapy and radiation which can go on for several months. 

“All these sorts of treatments can add up to six or eight months so this can really impact upon their families, particularly the young adolescents causing distress for everyone. We are keen to address this,” he said.

“Some of our treatments, particularly chemotherapy, can make women unwell, which is distressing for children to see and feeling they can’t do anything.”

Patients of any Perth Breast Cancer Institute (PBCI) clinician who have children between the ages of 14 and 24 are invited to take part in the study. 

Mothers with breast cancer who participate will be asked to complete questionnaires to evaluate their own emotional wellbeing and perceived family functioning. Children who agree to take part will also complete some questionnaires to evaluate their levels of distress and views on family functioning at a visit with an experienced clinical psychologist, along with a parent or support person if appropriate. 

“We’ve certainly seen anxiety, depression and real psychological distress from adolescents,” Dr Lau said. “There’s the fear that their mother is going to be sick because of the treatment but also at the back of their minds there’s the fear that their mother might succumb to the disease.

“Sometimes we do see women shield their kids from what’s going on and I’ve seen it in my practice where they just don’t tell their kids anything and that can create a lot of anxiety amongst the kids if they don’t know what’s going on.”

During the discussion, the clinical psychologist, together with the young person, will identify any unmet needs and what level of further support, if any, is required. Further intervention may include providing information about breast cancer, community support groups such as CanTeen or community mental health providers, or tailored sessions with BCRC-WA clinical psychologists.

“We can provide psychological support and we also provide information about breast cancer itself, what the diagnosis means and treatments, but also provide psychological support to help them get through this process.

“And we certainly counsel the patient and their families about their risk factors and what testing they can get done.”

About three months after the evaluation and interventions, the mother and the young person will be asked to complete questionnaires to evaluate whether seeking and receiving support has improved levels of distress and perceived family functioning in both mother and child, and levels of resilience in the young person themselves. 

“We’re really excited about this project because this is really an unmet need,” Dr Lau said. “We’re hopeful that we can really improve outcomes for families affected by breast cancer.”

Aspects of choice

Dr Lau explained that while most patients are confident in following the advice of their doctors and their medical team, there’s still a small portion of patients who choose not to take the medical advice they’re given. 

The Psychosocial Aspects of Choice in Early (PACE) breast cancer study has been designed by clinical psychologists to better understand the reasons why women may decline starting recommended treatment or who stop treatment early. 

“PACE seeks to fully understand some of the reasons behind why patients may choose to not accept medical team advice, whether that was a mistrust in doctors or a belief in alternate therapies that they consider to be more effective,” Dr Lau said.

Previous studies have shown that the risk of recurrence of a breast cancer event or a breast cancer-related death was more than six times higher in those who didn’t follow medical advice and complete the recommended treatment compared with those who did.

Understanding the reasons why people may choose not to follow the recommendations of their treatment team and being able to address some of their concerns may lead to better outcomes for these people. 

Reasons for not starting or stopping treatment early can include concerns about side effects, lack of confidence in the effectiveness of cancer treatments, lower level of concern about recurrence of cancer, depression, mistrust in doctors or a belief that alternative therapies will be more effective. 

“In the age of the internet, social media and misinformation, some patients can have an inherent mistrust of medical advice,” Dr Lau said. “We’ve seen that with certain elements of COVID treatments and COVID vaccines, it can be challenging at times.”

He said there may be a place for complementary therapies and sometimes not undertaking conventional treatment could be a doctor-patient joint decision based on a number of factors. 

“While complementary therapies can be used in conjunction with standard medical treatment, and we know that a high portion of our patients choose to do so, it’s just whether they choose to use these therapies in place of standard medical treatment,” Dr Lau said. 

“Sometimes joint decisions are made between doctors and patients to forego treatment if the side effects aren’t tolerable and that’s one factor.”

Dr Lau added that cost of treatment could sometimes be a factor, as well as patients listening to external opinions of family and friends.

“Cost occasionally comes into it, even though the PBS does do a great job of making the treatments affordable, but it’s still a factor in low socio-economic groups,” he said. 

“There’s also peer pressure. Because cancer is so prevalent, everyone knows someone who’s had a cancer and was treated differently, and that can be quite powerful, which is also another factor that can be challenging for clinicians to overcome – reassuring the patient that they trust us in the advice that we give.”

All patients diagnosed with early-stage breast cancer and who are recommended for breast cancer therapy (hormonal therapy, chemotherapy or targeted therapy) by a PBCI clinician are invited to participate. 

“If they choose to participate, these patients are then asked questions about their beliefs in medicine, their emotional wellbeing, and whether they intend to use alternative or complementary therapies,” Dr Lau explained. 

“The final decision about an individual’s cancer treatment is their own decision to make. However, understanding the factors influencing a patient’s decision-making enable us to ensure they have all of the knowledge and understanding to make an informed decision.

“A diagnosis of breast cancer is very confronting. Patients are free to make their own decisions about what they feel is appropriate for them.

“We really want to understand how and why patients elect to not follow medical advice and treatment designed to reduce their breast cancer from recurring. Hopefully, with this research, we can improve our communication and establish some early strategies to ensure the best outcomes for our patients.”