Introducing the Previvors

Meet a new group of people: the Previvors. They are not a dance troup or acapella choir. Previvors are members of a select club they never asked to join: surVIVORS with a PREdisposition to cancer. 

As I've discussed on a number of posts, perception shapes reality. A healthy friend of mine just learned she has a gene that increases her risk of developing breast and ovarian cancer. When she heard, "You are BRCA 2 positive," her world changed in ways that parallel that of people who hear, "You have cancer."

In medical texts, these people have been referred to as "unaffected carriers" because they carry the gene but have no evidence of the disease for which they had increased risk. The "carrier" part is accurate, but the descriptor, "unaffected," couldn't be more wrong.

As my friend will tell you, previvors feel their mortality in a whole new way. Health concerns zoom to the top of their to-do list. Suddenly they enter the frightening and complex language and statistics of survival, so they can make decisions about undergoing elective oophorectomy (removal of the ovaries) and/or mastectomy (removal of the breasts). And then there are the implications for her daughters.

FORCE -- Facing Our Risk of Cancer Empowered -- is a resource that can help previvors make wise decisions and live as well as possible in the face of uncertainty. FORCE has helped the medical community recognize that this group "has unique needs and concerns separate from the general population, but different from those of people already diagnosed with cancer." 

Comments

[Kairol Rosenthal]

In a few weeks I am going to accompany a friend and write an article on her experience of going to genetic counseling and testing. I can imagine that the previvior's stress of waiting and wondering is paramount to the stress I am experiencing now as I creep up upon my 6 month scans.

[Wendy]

Dear Kairol,
I hope you'll share the link to your finished piece with us. I, for one, am looking forward to reading it. With hope, Wendy