Professor Arlene Chan is an Australian medical oncologist who is passionate, driven and determined to make a difference to the lives of 17,500 Australian women diagnosed every year with breast cancer. A principal investigator on more than 80 clinical trials, she is constantly striving to find better answers and new therapies for all women confronted with the disease. While research is her professional passion, her inspiration is always the women she treats, as well as their families. Professor Chan is set to launch a landmark study which will examine the impact on children of a breast cancer diagnosis in their mother or father.
She says, “I have been privileged to treat more than 4000 patients with breast cancer. You get to know these women very well and while they are not friends in the traditional sense, you can’t help but be touched by the personalities of these women, their partners and family members. They motivate me. When I see what these women and men go through to keep their families and their lives going normally while receiving treatment, as well as perhaps dealing with the inevitability that the disease is not going to allow them to survive their normal life span, it clearly has an impact on me as a clinician. That is all I need to inspire me to do what I do.”
This is the Breast Cancer Offspring Study (BCOS) , and we want to recruit up to 100 children aged between 14 and 24 in the next six months, to examine the varying levels of distress they may have experienced as a result of their parent’s diagnosis and to identify the predictive factors that might make these children and teenagers more likely to experience distress.
There has been very little published specifically relating to breast cancer. The impact on children with a breast cancer parent is quite different to someone whose parent has a smoking related illness for example, because those patients tend to be older and their children are more likely to be adults.
We know that going through this disease is a journey, whether a woman has early or metastatic disease; it is generally over a prolonged period of time.
These children grow up seeing a parent experience a disease which is ongoing. From my own experience with these families, I know some of them are concerned about losing their parent; others are worried about the illness itself and the effects of treatment. Others worry about the “hereditariness” of their mother’s disease.
So, we want to look at the children of women with both early and advanced breast cancer and we want to know what the psychological impacts of a breast cancer diagnosis are on children, and whether there are likely to be any long term impacts.
Eventually, we anticipate data from this study will enable us to make recommendations about what support services are required to help these children and families better navigate and understand the experience, with appropriate support services in place.
Common sense might tell us that children of single parents, for example, might not cope as well, but this is not necessarily so.
Maybe we will find that children in these families will typically adapt better than a child with a family where there is a mum and a dad. So, we are looking forward to seeing what the study can tell us.
We do expect there will be differences between ethnic groups, with different ethnicities typically experiencing different levels of family support.
This is just the beginning and we hope it will inspire others to look into all the issues facing offspring as well.
Often we see that employment is not really catered towards women who need to have frequent hospital attendances, or who are feeling fatigued as a result of their treatment. I think we really need to look at how we can support these women – both early and advanced breast cancer patients.
At a policy level, we need employers to recognise that the physical capacity of these women might be intermittently curtailed because of the treatments they are on, and they might be experiencing things like memory loss and fatigue.
It must be recognised that these women are still important and worthwhile contributors who might need to go to part time work, or who need more flexible work arrangements during the time they are undergoing treatment. This is an issue for both employers and policy makers.
They should be absolutely assured that there is hope and there is a lot of scope for ongoing research to improve outcomes. At every stage of their breast cancer treatment – surgery, radiation and drug therapy – they should feel confident that every aspect of their care has an evidence base and strives to cure or prolong their lives. Here at BCRC-WA, we are hoping to provide a complete integration of all aspects of management from the point of diagnosis through to survivorship post-breast cancer diagnosis; whilst conducting meaningful, patient-focussed research and education.
Already, we have a greater choice of drugs to offer these women, and an ability to understand and anticipate the toxicities they may face from their treatment.
We also have various options that can be offered when one line of therapy stops working and the disease becomes resistant.
Also now, particularly in first world nations, we have an ability to enrol women in trials so we can provide them with newer targeted therapies that are in the early stages of development and are not yet standard of care. I would definitely encourage women to inquire as to their eligibility to be part of clinical research trials.
Moving forward, I expect our growing understanding of the molecular sub-types of breast cancer will allow us to individualise and tailor treatments much more effectively, both with the anticipation for better outcomes but also to reduce unnecessary toxicities with the treatments we currently use. We have come such a long way, but there is still a wealth of work to be done.”