“I had breast cancer almost twenty years ago. And I have some survivor guilt – I know a lot of women who have died from this illness. But I lived.” A new acquaintance said something along those lines to me a few weeks back, at a lovely outdoor music event here in Austin. Walking home later through the busy city streets, I felt an upwelling of emotion. But it wasn’t survivor guilt I was feeling.
It was Previvor Guilt. And certainly not for the first time.
“Previvor” is a term coined by the non-profit group FORCE (Facing Our Risk of Cancer Empowered) to mean a person who is living with an inherited predisposition to cancer, but has not been diagnosed with cancer.
I am a previvor. I have a BRCA2 mutation and have not (up to this point) had to hear the words, “You have cancer.” I’ve never had chemo or radiation or surgery to remove a malignant growth.
And yes, I do have some Previvor Guilt.
I feel a guilty sadness that my mother was born with the identical DNA sequencing error on the same gene, but that it has had such a relatively different impact for her. First breast, and then ovarian, cancer. Didn’t know about the BRCA mutation until afterwards. I feel so sorry – and so grateful – that her cancers led to her genetic testing and to mine as well, and thus to the knowledge that enables me to take steps to reduce and monitor my risk. Previvor Guilt.
I feel terrible that I may have passed this mutation down to any of my three sons. (Because yes, men can carry and pass on a BRCA mutation. And BRCA2 mutations bring some cancer risk to men, though not at the same level as they do to women.) Of course I don’t blame my mom in any way for giving me the mutation — but somehow feel guilt myself for possibly doing the very same thing. I didn’t say this Previvor Guilt thing was rational…
I feel so bad for my friends and acquaintances who have experienced breast and/or ovarian cancer firsthand. Most cancer isn’t hereditary but is instead sporadic. They generally didn’t have the chance that I’ve had, to take preventive action and to be closely monitored. It isn’t fair. And I feel Previvor Guilt.
It is Breast Cancer Awareness Month, of course, so stories of survivors are everywhere. And I feel guilty to be a previvor instead.
Which is one reason I have been found my involvement with FORCE and other BRCA groups (those Facebook groups again – see “Help Wanted” below) to be so empowering and encouraging. There I’ve connected with many women who are in the same situation that I am. But even so, many women learn about their BRCA status and come into the BRCA community after receiving a cancer diagnosis – like my mom. And I feel Previvor Guilt.
So I’m working through my guilt. I’m trying to let it go. It doesn’t serve any good purpose, I know. As I said, this really isn’t a matter of rational thought. For me, yoga helps. And walking the Town Lake Trail.
And I can work through my Previvor Guilt by supporting cancer patients and survivors. Both in their individual journeys with cancer, and more globally by supporting research to understand the causes of cancer and to find better diagnostics and treatments. And finally, by doing my best to help spread the word about hereditary breast and ovarian cancer and BRCA mutations, so more affected persons can become previvors too.