Although the term can be triggering for some, it’s really important to understand what a ‘previvor’ is. Here are five useful things to know:
A previvor is someone who usually has a hereditary risk of breast or ovarian cancer, genetic or familial and has opted to undergo prophylactic treatment as a preventative measure to avoid a future cancer diagnosis.
This treatment can include a mastectomy, with or without reconstruction, hormonal therapy or a combination of the two.
There are some people who identify as previvors who are opting for surveillance, instead of surgical or medical options to reduce their risk of breast cancer.
If you are unsure whether you are at an increased risk of developing cancer, it’s a good idea to speak with your doctor to discuss your family history. Before doing so, using our Know Your Risk Tool is a great first step to guiding this conversation.
Where did the term come from?
The term ‘cancer pre-vivor’ came about in 2000 from the US organisation, Facing Our Risk Of Cancer Empowered (FORCE). Founded by Sue Friedman in 1999, Force acts under the philosophy that no one should face hereditary cancer alone.
According to FORCE, the medical community used the term ‘unaffected carrier’ to describe patients who had a genetic mutation but had not developed cancer. Women felt this was dismissive of carriers and the fears, stress and choices they faced as a result of their increased cancer risk and wanted to create a term which represented these emotions and challenges.
Finding out you are at an increased risk of cancer can be incredibly scary. There is a lot of information to take on board, and decisions about your future health to be made.
Here at Pink Hope, we believe that being armed with the right knowledge provides the opportunity to make better decisions for your future, that are aligned to your own personal values, beliefs and circumstances.
This type of decision-making process can be supported through additional support from other previvors, survivors and professionals such as Pink Hope’s online support groups, Information & Support Days, and online resources.
Does everyone identify with the label ‘previvor’?
There remains some confusion around the term previvor within the broader cancer community. Some women who have faced breast cancer feel as though the word previvor is offensive and devalues their own experiences. Other people feel as though it pathologizes a person’s experience when they have not had cancer, contributing to the stress and anxiety they may be facing as a result of their high-risk status.
The ‘us’ versus ‘them’ mentality is damaging to all women who are struggling with their risk, or with a cancer diagnosis. Being able to self-identify with whatever label one wants is empowering when it comes to getting the support and connecting with a community who will guide and accept you – because while every journey is different, it’s what we need no matter what we are facing.