Friday, April 15, 2011

Being on the low end of high risk

Sometimes I really feel like I don't belong.  And before you reassure me that I'm a part of the high risk community, hear me out (because this isn't that post where I say I feel fat because I want everyone to reassure me I'm skinny and beautiful).

I attended my first FORCE meeting locally.  And it was lovely.  The women were lovely.  The conversation and exchange of ideas was lovely.  Aside from all of us facing cancer head on, it was lovely.  I was the only(known) uninformed negative there.  With the exception of one woman preparing to be tested, the rest of the women were positive and either completed surgeries, were scheduled for surgeries or were preparing for surgery.  Now, I know surgery isn't for me, right now.  The CGC (who was there and who also did my test) said it best: 
The difference between 25% and 85% risk isn't the path we take, it's how much time we assume we have to move along that path. 
I've realized that being negative is a blessing in many ways.  My family history wasn't as significant as that of the other women in the room, and I have time (cross your fingers, knock on wood, and whatever other heebie jeebie stuff you do for good luck) to make decisions.  I'm taking a proactive approach to my cancer screening and I'm doing everything right.  And I'm not complaining, well not usually.  I'm grateful to be of todays generation and not my grandmothers and I'm grateful for all of my Previvor Sisters.

But sometimes it's just downright lonely.  Women who have tested positive for the gene forget what it's like to be in that unknown but surveying stage.  And women who aren't high risk aren't being screened like I am.  Hell, at my age, the only screening my peers receive is at their Ob/Gyn appointment.  Sometimes I feel like the low end of the high risk community is a silent voice, a forgotten battle because most of the women in this recognized community are running a sprint, and well, us uninformed negatives are in it for the marathon.


  1. I would really love to know what you think after reading a article like this?
    I am having a dilemma as to if I think the severity of the surgery is really being taken into account in regards to the impact on body image and the propensity for low end of high risk assessments to morph in to even more aggressive procedures.

  2. I think many women who are high risk, especially BRCA positive, feel like a masectomy is not an "if" but a "when" question. I know had my BRCA test results came back positive, I would have opted for surgery. However, the decision for a prohylactic mastecomy is a very personal and individual decision, and I don't think it's a fit for any broad group, regardless of where they fall on the high risk spectrum.