Previvor? Endurance Vs Early Action

Understanding Previvorship

Upon my six-week follow-up from surgery, my doctor referred to me as a previvor after my hysterectomy because my surgery was performed as a preventive measure to reduce my risk of developing ovarian, uterine, and cervical cancer. I didn't know how I felt about that term. So I immediately did my own research even after she explained.

A previvor is an individual who has inherited a genetic mutation (like BRCA1, BRCA2, or PALB2) or has a high family risk for cancer, but has never been diagnosed with the disease. The term "PREVIVOR" was coined by FORCE in 2000, which refers to "survivors of predisposition to cancer." They have taken medical action to reduce or eliminate the risk of developing it.

Unlike a survivor, whose journey involves fighting and overcoming cancer, a previvor’s journey involves making proactive decisions to prevent cancer before it occurs."

In my case, the hysterectomy was not performed to treat cancer but to prevent the possibility of ovarian, uterine, or cervical cancer developing in the future. That decision required careful medical consultation, an understanding of risk factors, and a path that would protect my long-term health. I get it. I guess. This is why the term previvorship is used it recognizes the courage and intentional action taken to prevent disease.

So in many ways, I now find myself on both sides of the table. I am a two-time breast cancer survivor, and now, because of the preventive surgery I chose to have, I guess you could say I am also a three-time previvor, if you will. I am also conflicted by my new "title".

My journey has allowed me to understand both the reality of surviving cancer and the importance of preventing it when possible. Which, as usual, pretty much qualifies me to have the hard conversations: comparison, competition, understanding, and OVERstanding how this can become controversial.

Why Some Survivors May Feel Differently About the Term

For individuals who have survived cancer, their experience often includes receiving a life-threatening diagnosis, undergoing treatments such as chemotherapy, radiation, or multiple surgeries, and living with the uncertainty that accompanies the fight for survival. Because of this, some survivors feel that the word “survivor” carries a deep emotional and physical weight tied to enduring cancer itself.

When someone who has never had cancer is called a previvor, the similarity in language can sometimes feel as though the two experiences are being placed in the same category. The feeling is usually not about the person, but about protecting the significance of what survivors have endured.

Can the Two Experiences Be Compared?

While the experiences of survivors and previvors are related within the broader cancer community, they are not the same journey. I can certainly say that because I have experienced both!

A survivor has faced cancer directly and endured treatment to live beyond it. A previvor has faced the possibility or elevated risk of cancer and chosen to take preventive action to reduce that risk. Endurance. That's the word that will separate the two. Not "importance".

Both paths involve significant medical decisions and emotional weight, but they represent different stages of the cancer continuum: treatment versus prevention.

Should Previvors Be Celebrated?

Many advocacy communities recognize that previvors also deserve acknowledgment. Previvors often make difficult decisions about preventive surgeries, enhanced screenings, or lifestyle changes in response to medical risk factors or family history. These choices can involve physical recovery, emotional processing, and a deep awareness of potential health challenges.

Recognizing previvorship does not diminish the experiences of survivors. Instead, it acknowledges that the impact of cancer reaches beyond diagnosis and treatment.

Survivors represent resilience through illness, while previvors represent courageous action taken to prevent illness before it begins. Again, it's all in the words we choose to compare. Resilience. Courage. And after a more insightful look I myself can say, it takes a lot of courage to remove something that shows no symptoms, no signs of pain. It's still useful, but you have to choose to relinquish it. That is a hard thing.

A Broader View of the Cancer Community

Within cancer advocacy, many organizations recognize multiple people whose lives are touched by cancer:

• Survivors – those who have faced and lived through cancer

• Previvors – those who have a high risk for cancer and or the genetic mutation and have taken preventive measures due to elevated risk

• Caregivers – those who support loved ones through the journey

• Families and supporters – those who walk alongside them

Each of these roles reflects a different aspect of the cancer experience.

Recognizing previvors simply broadens the conversation. It acknowledges the importance of prevention, awareness, and proactive healthcare.

Adding previvors to the conversation does not replace or compete with the stories of survivors. Instead, it highlights another dimension of awareness and prevention, not competition. While I actually struggled with being called a "previvor", I get it. I DO wish another name could have been created. They should've asked me. LOL! I got a couple: PROACTOR, or PREVENTOR. But neither of these sounds as thought-provoking, marketing, or medically termed as PREVIVOR, so I get it. It may not always land well with other survivors, but for me? I get it. One of my closest allies said to me, "Both the survivor and previvor are healing. Not just physically, but their soul may be broken. We need to concentrate on THAT healing too" And I couldn't agree more. I hope for some who are challenged or may be triggered by medical "titles" regain the focus of the fight and thats to beat ALL cancers. However the fight finds us.... we are supportive! I hope after reading the blog, maybe it will soften the blow.