Previvor

10Dec09

In the community of BRCA+ people, there has been a new word developed for people who have tested positive for a deleterious mutation but no history of cancer: previvor.  It’s purpose is to help give a label and acknowledge the similarities that carriers face with those who do have cancer.

I mean no offence to those who do use the word proudly, but I don’t like this word.  For me, at the stage I am in right now, it strikes a bitter note.  The moment I hear it, I inevitably fast-forward to “survivor.”  I know this word is supposed to be a word of empowerment.  A rejection of being a victim of disease.  But I don’t want to be a survivor, when that means getting cancer.  With all the fears I have right now, previvor sounds to me like “a person whose going to get cancer.”

I think of myself as a realist.  I know the risks that I am facing right now.  A 50% chance of being a carrier.  And up to a 85% chance of breast cancer and 27% chance of ovarian cancer if I am a carrier.  Although I may be so lucky not be a carrier, I am already thinking of myself as one.  I think it’s more practical to prepare myself somewhat, than to get blindsided.  In this scenario, the worse that could happen is that I find out that my risk is low.  But if I am a carrier, I know I would be taking significant proactive steps to do my best to prevent cancer.  And that’s what gets me about this word, previvor.  I don’t want to be going through this stage of my life as “pre-cancer,” waiting for “post-cancer”.

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