A Stitch In Time saves nine is a proverb meaning that to solve a problem immediately will save work later. This project applies this principle to breast cancer; by reducing a women’s risk to develop the disease, it could save her and her family the devastation a diagnosis may cause.
One in eight Australian women will develop breast cancer, this statistic relates to the general population. The understanding of what being at ‘increased or high risk’ for developing breast cancer is not widely understood. However, around 5-10% of breast cancers are due to an inherited faulty gene, commonly a BRCA1 or BRCA2 gene mutation, or a strong family history of breast cancer. That means 860-1721 women diagnosed with breast cancer in Australia each year could potentially have prevented the disease. This generates a great deal of confusion and stress for many families when they learn of a breast cancer diagnosis in a relative and have to consider what it might mean for them.
Currently, trying to understand the implications and navigate the prevention pathway is challenging for women who learn of a family breast cancer history and/ or a gene fault.
Common questions arise, such as:
“I’m young and I haven’t started a family yet, should I tell my partner I’m at high risk of developing breast cancer? “
“I’ve had children and feel my breasts have done their ‘job’, should I have a preventative double mastectomy?”
“Should I do nothing and hope for the best, after all there’s no certainty I’ll get breast cancer?”
However, for many women simply ‘putting it out of mind’ isn’t a possibly. These are big, emotional decisions and being able to get good advice is really important. Project participant Dyna Eldaief told us, “My breasts feel like ticking time bombs!” and her sister described it as being like a persistent concern that doesn’t go away and gets worse with time – Donna told us, “It’s like having a monkey on my back”.
In fact, a majority of women at high risk currently don’t do anything to prevent breast cancer. While this is, and always should be, a personal decision made by each individual woman, this project’s expert consultants suggest that there is a pressing need for new ways of communicating the many options and pathways available to women in this situation.
It’s said that knowledge is power and the knowledge that prevention is always better than cure lies deep within the Hippocratic Oath. However the focus for breast cancer is currently on research related to cure and treatment. For women and families who are at increased risk the wait-and-see game can take a heavy toll. Annual trips to the Familial Cancer Centre, routine mammograms and MRIs are a constant reminder and this is often triggered by a breast cancer diagnosis in a loved one.
Why is this so important- frankly because cancer sucks. It is a devastating disease in all its forms and it takes years of living well away from those who develop it, even if they beat it. The treatment is usually long, hard to endure and physically and mentally taxing. Nobody wants cancer.
Through the filming and prior research we’ve conducted for A Stitch In Time we’ve learned from a number of women who sit in the high risk category who have seen their mothers battle cancer are very scared of this outcome and lean towards prevention options.
Those who monitor and are ‘waiting to see’ have said “as soon as they find a cancer, ‘that’s it’, they (my breasts) will come off”. It’s not as simple as a double mastectomy once you have cancer, and this is not understood. The knowledge that they would require cancer treatment and all that follows is simply not clear to these women even though they all attend high risk clinics for their checkups.
The gap between physician and health worker knowledge and patient understanding is large despite the dedication of these practitioners and clinics in assisting high risk women to make informed choices. Part of the reason for this gap in understanding comes from our ability as humans to receive, process and understand information when emotions are very much in play.
Women reported they often can’t remember the information once they leave the consultation and only think of their questions on the way home, so they put them aside for their next visit which may be months away.
Some clinic’s ask women to take notes and ask their partner to attend with them to help with the retention of information.
Another solution is to have a place online where women can go and find the information at anytime they like. We have been using stories to connect with one another and make sense of the world for millennia. A series of video’s with other women sharing their stories will go along way in assisting women to make sense of their own situation, especially if confused after their appointments.
Watching another women share her story will cut though and resonate in a way that reading health information or trying to recall options delivered in medical consultations cannot.
Through intimate, personal stories, we will reveal what these options look like, what women might expect from their own journeys and present opportunities to access accurate information and support groups. Ultimately the aim is to empower women at high risk (and their families, friends and communities) to be fully informed in their decisions.