I'm a "Previvor" - are you offended?

Ok, so I was casually surfing the internet for some "previvor" gear I could wear along with the t-shirt my work gave me to wear at the Komen walk next weekend, when I came across a message thread (on babycenter.com of all places) talking about whether or not the term "previvor" is offensive. 

I read all 6 pages of posts!  I was horrified by the posts on there.  There were a good number of sensible people who either weren't offended or acknowledged they didn't have enough info to feel one way or the other.  But the people who were offended - wow. 

I'm pretty sure I had a post about being a previvor early in this blog, but I'll cover it again.

From the FORCE website (www.facingourrisk.org)

Cancer 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. The term specifically applies to the portion of our community that has its own unique needs and concerns separate from the general population, but different from those already diagnosed with cancer.

To me, the point here is that we, (this group of people - and myself) are in a unique, life altering situation and it's helpful to have a term to define ourselves by, especially when so many are involved in the breast cancer awareness efforts.  It's so much easier to say "I'm a previvor" than say "I have a genetic mutation and extensive family history and have an 84% risk of getting cancer myself, and it will likely kill me like it did other women in my family before I turn 40, and there is a 50% chance I passed this on to each my of daughters and I live with fear for my life and for my children every day".

The main point of contention on the discussion thread seemed to be the misconception that "previvors" are just out to get attention and get the same sympathy, or "steal the thunder" of cancer survivors.  Keep in mind, not a single one of those offended indicated that THEY were a survivor.

Some of them said that the term previvor implies that cancer is preventable and survivors simply didn't do what was necessary or try hard enough to prevent it.

One person went as far to say that they were offended because the term is attempting to draw similarities between being a "previvor" and someone who is actually a "survivor" of breast cancer, and goes on to compare "having a double radical mastectomy back in the days" (a survivor) to "having a little breast tissue removed".(a previvor)

I wish my baffled speechless silence could resonate here in this post.

But since it can't, I must find and apply words -

PRE in previvor is about a predisposition (higher risk), and of course knowing you're at higher risk causes some (most?) to want to do what they can to TRY to prevent it.  I still don't understand how that indicates that a survivor (or someone who sadly didn't survive) didn't "try hard enough".  I think we all know that isn't the case.  I know that no matter "how hard I try" I might still get cancer, and it might still kill me, and I hope no one will think less of me for it.  I certainly don't think less of my family members who lost the battle.

The comparisons of surgery is just ridiculous.  Of course someone who goes through Chemo and radiation and gets horribly sick and loses their hair and has poor healing from their mastectomy due to the treatment, has a much harder go of it that the preventative route - THAT IS WHY WE DO IT PREVENTATIVELY.  

But at the same time - and I'm sorry if this offends - I had a surgical biospy 4 years ago to remove a tumor (which turned out to be benign).  Had that tumor turned out to be cancer,  I could have left with that half inch scar and tumor completely removed and called myself a "survivor", and that in no way compares to what I've been through the past 2 years since learning of my BRCA mutation, with the fear, the mastectomy (4 inch scars across each breast) the complications (nerve damage, nagging pain, less than ideal cosmetic outcome), and the future which will include removal of my ovaries, early monopause (which increases risk of heart disease) and knowledge that sadly it likely won't stop with me because I already had children before I knew - and my children have a high risk of having to deal with this too.  It's far from simply being "a choice I made".



"The Cure Begins with Education"
fitting huh?

The reason I was looking for previvor stuff to wear at the Komen walk wasn't because I was hoping to steal attention from anyone else... or get sympathy...  I thought the event was about breast cancer awareness, so I could walk the walk in simply my work issued event t-shirt (which is really great actually), which is still for a great cause, but I kind of feel like I should seek out opportunities to go the extra mile for promoting awareness of breast cancer. 

Does that hurt anyone?  Does THAT offend?  So if wearing a pink and teal ribbon caused someone to ask me what that was about, I would have the opportunity to tell them, no I'm not a survivor - I'm a "previvor" and then turn my experience thus far with hereditary breast cancer into something potentially helpful for someone else.  I was looking for a conversation starter. 

Maybe by spreading awarness of hereditary breast cancer and FORCE and "Previvors", people my age who never would have thought they were at risk would look a little closer.  Maybe people would make the connection with seeing my daughter standing next to me, that risk doesn't start when you're 40.  Maybe people wouldn't be so closed minded and insensitive to a group of people who are facing their own very real nightmare, even if it's not the same as having cancer (again I never said it was).