Defining Previvor

I recently emailed FORCE to get some clarification about the definition of the word "previvor." Perhaps my email was a little loaded, but I think it also accurately conveyed how I feel. I feel like FORCE's definition of the term leaves out a huge population of people who have been proactive about their predisposition. Here's some of what I wrote:

Hello,

I have read much controversy about the word previvor and I am writing to get some clarification.

I am someone who has had a prophylactic bilateral mastectomy because of my BRCA1 gene mutation and strong family history. As I understood it, this is what makes me a previvor. I am someone who used knowledge as power and saved my own life. Of this, I am very proud.

However, I have read many articles and blogs that define the word previvor as someone who simply has a genetic predisposition to cancer. By this definition, a previvor is someone who hasn't necessarily taken action, but was merely born with a genetic mutation.

I'd like to know which definition FORCE supports. If it is the first, someone who has taken action and saved his/her own life, then I am a proud previvor and want to reach out and help people across the world and spread the word. I have made t-shirts that say "Proud Previvor" and worn them to breast cancer related events, as well as just on a regular day out and about. People ask about the word and it gives me an opportunity to get more information out there. I won a local essay contest about being a survivor titled, "A Survivor of Sorts: A Previvor's Story." I have participated in breast cancer walks and talked about being a previvor and written it all over my gear. I respond to questions and comments on websites under the impression that my definition is correct. As you can see, I've created an email account dedicated to the cause and use it to communicate with women who are struggling with the news of being BRCA positive and those who are struggling with the decision to have prophylactic surgery. I share photos and information based on my experience and believe I have truly helped many women in this way. Just as my essay title implies, I do believe myself to be a survivor of sorts. This is how I want to continue my life.

But if the definition really is the latter...I almost don't want to be associated with the word and agree with those who find it rather offensive. A person born with a genetic predisposition to cancer is not a survivor of any sort. Someone can be BRCA positive, take no action, get cancer, and potentially die. Not taking action should not be associated with any word that implies living through something difficult (like survivor or previvor). I know of people who are BRCA positive who sat on it for too long and got breast cancer. Just because people are born with a genetic predisposition to cancer doesn't mean they are brave or proactive. It just means they have a gene mutation. I spent time being BRCA positive before I had my surgery. I would never have called myself a previvor. I was merely BRCA positive.

After my surgery, I felt very alone and still have only met one other woman (in person) who has made the same decision. With the emergence of the word previvor, I felt like I had a home in the world of breast cancer where, until then, I'd only seen survivors and supporters. And I thought this word, this category of people, gave me what I needed to feel...recognized. I mean, let's be frank...we recognize survivors because they kicked cancer's ass. They struggled, they fought, they won a battle...and they will forever have the scars and painful memories of that battle. My sister was diagnosed at 27 and really supported me (pushed me) to have the prophylactic surgery. She flew out from the east coast to the west for two weeks to be here for me, because she said that what I was doing was harder in some ways than what she did. I disagree with her and can only imagine what she went through, but that's neither here nor there. I struggled, fought (particularly with doctors and my insurance company, not to mention myself, at times, and people who did not support my decision), and will forever have scars and painful memories of my experience. My breasts are gone. I have no feeling throughout my new breasts and into parts of my back. I have huge scars. I have weird, constructed nipples. What I have does not compare in the slightest to what I had...except that I have my life. I do not consider my experience to be comparable to that of a survivor. I cannot. Because I didn't have cancer. However, I cannot consider my experience to be similar to that of someone who knows she has a high risk of cancer and does nothing. Because she didn't choose to have the surgery. I believe survivors are recognized for their strength and bravery on the highest of levels. And they can wear the word proudly. As a society, we encourage them to wear it proudly and show the world who they are and what they've been through.

Let me be clear...this is not about attention or pity or anything as minor as those things...this is about owning my life and my decisions and being proud of them within a community of peers. People who haven't survived breast cancer (or any cancer) would never venture to call themselves survivors. Even those who are by a patient's side throughout all of treatment and see everything that happens and experience everything with that person, still won't say they know what it felt like. In the same vein, people who are BRCA positive and haven't been through what I've been through...they should not venture to call themselves previvors.

Please let me know how FORCE means the word previvor to be defined so that I know how to proceed from here. Regardless of your response, I will continue to reach out and be an active member in the world of breast and ovarian cancer prevention. I am still proud of what I did and want to spread the word and help others. I will simply find a new way of identifying myself. Thank you very much.

Sincerely,
Sarah

Looking back on my email, I see some areas where I was...wrong. To use the words "simply" and "merely" when describing a genetic predisposition to cancer is degrading. I remember what it felt like to be told that I have the BRCA1 mutation. It was horrific. And I was not ready to do anything about it until months later. Even then I only participated in a clinical trial (though it was an extensive one with biopsies and medications). And after that, the truth is that I could have gotten breast cancer. So, for a year and a half, I was one of those people who knew about the predisposition and wasn't proactive. And I know the umbrella of fear under which I lived. And I am happy that people with a predisposition to cancer are being recognized. It's important for many reasons, only a few of which include helping raise awareness, campaigning for research and more/better options, and to offer those in the community a positive "label" by which they can define themselves and reach out to one another. So, I retract the negative feelings I have towards people with a predisposition to cancer being called previvors. To bond people who share this quality, regardless of what decision they make and how they choose to deal with it, I think is great!

However, I have now done something. Like I said in my email, I have scars and painful memories and yet still live with a bit of fear that I will get breast cancer (because it's possible) or ovarian cancer. Just like Sue Friedman wanted to give a "label" or a "home" to those with a predisposition to cancer, I want a home for those of us who have taken action.

According to FORCE (and confirmed in the lengthy response I received from Sue Friedman, herself), previvors are "individuals who are survivors of a predisposition to cancer but who haven’t had the disease. This group includes people who carry a hereditary mutation, a family history of cancer, or some other predisposing factor." And we all know the definition of a survivor.

SO, what I think I am now going to consider myself is a proud proactive previvor. I don't want to take away from those who choose surveillance over surgery. People with a genetic predisposition to cancer who haven't elected to have surgery deserve a place in this community. I'm not fighting that. I respect them more than it seems like I do. . And I, myself, am a previvor of ovarian cancer. As I have a high risk, but have yet to take action. But for ME, I felt like a sitting duck for breast cancer. But not everyone feels that way and I recognize that. And fact is, survivor, previvor, whatever...we all have this genetic mutation that bonds us. Some women who were diagnosed with breast cancer and then found out they have a gene mutation are considered previvors of ovarian cancer. There is bravery in all of it...being a survivor, a previvor, a supporter, even! And also in what I now call being a proactive previvor. :)