What is a Previvor?

Last night as I lay in bed perusing through my IG stories, a friend shared a story from a previvor who is a nonprofit co-founder. The message she was sharing was that a funder had pulled her grant because the young woman was a “previvor.”

Excuse me? Yes, the funder pulled the funds that would have supported Camp Breastie, hosted by www.thebreasties.org, which is an annual four-day summit where 600 people impacted by breast and gynecologic cancer gather for community, advocacy, and education in Connecticut.

What is a Previvor? A previvor is a person who carries a genetic mutation, a predisposition, or a family history that significantly increases their risk of developing a certain type of cancer, but who has not yet been diagnosed with cancer. The term is often used in the context of individuals who have a BRCA1 or BRCA2 gene mutation, which is linked to a higher risk of breast and ovarian cancer. Previvors may take proactive measures to manage their risk, such as enhanced screening, lifestyle changes, or preventive surgeries.

So, to tell this young lady that because she is a previvor, not diagnosed or experienced cancer, that you are going to pull the funding for the event is unacceptable!

Previvors have the same experience as those of us who have been diagnosed with cancer. When you are told that you have a genetic mutation, the question for you is not “if” you will be diagnosed but “when” will I be diagnosed? And to walk through the process of deciding whether to wait until I have cancer to act, is unbelievable.

“This is heartbreaking but so validating. Previvors matter. We belong in the cancer space too. Thanks @paige_previvor for speaking up!”

Sarah T., Previvor

I reached out to my friend Sarah and asked her to give us some perspective as a previvor, here’s what she shared with me.

“I was 29 when I was tested and had my surgery when I was 30. I did not get off easy when it comes to this disease. I had to decide if I needed to freeze my eggs. Do I have a double mastectomy? Even after my surgery, I am not fixed. Unless my genetic code gets repaired, I will always have it. And I will always have to be vigilant.”

“Now, I get alternating MRIs and Ultrasounds. But I also get my eyes checked, skin checked, and will have to do colonoscopies, literally all the things forever. It’s not like we can go around removing every part of our body to avoid getting cancer.”

This is the life of a previvor which is like the life of someone who has been diagnosed with cancer.

To all my fellow previvors, we love you, you deserve it, and you belong in the cancer community!

Your Breast Friend,

Edie A. Tolbert

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