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- Understanding Biographical Disruption
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- No, yes, I understand that.
- Sarah’s cousin, Rachel, shares the news that she has just gotten tested for the BRCA gene and discovered that she has it and could be at risk for breast and ovarian cancer. Both their moms died of breast cancer very young.
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- Advances in genetic testing mean that it’s now possible to identify some people who may be at risk for hereditary cancer syndromes, like breast and ovarian cancers that strike very young women.The sociologist Michael Bury defined a phenomenon known as Biographical Disruption, or a major illness or injury that forces a person to rethink their self, their relationships, their behaviors, or their outlook.Essentially, it forces a person to reconsider what they thought their life would be like.
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- This is terrible news for Rachel. I feel so badly for her, especially with the kids being so young.
- But Rachel also seems to think that I need to get tested, too. Is that true?Just because she’s got the gene, doesn’t meanthat I’ve got it. I mean, it’s probably a 50/50 chance that I’ve got it, right?
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- About 13% of women develop breast cancer at some point intheir lives, but women who carry BRCA variants are at much greater risk.Anywhere from 45-70% of them will develop breast cancer before age 70.Because Rachel and Sarah have two family members who died of breast cancer very young.They are also Ashkenazi Jews, which also increases their risk.
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- Should I get tested? What if I do carry a gene that would increase my risk? Would there even be anything I could do about it?
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- Women who carry BRCA variants could choose to under go breast cancer screening at an earlier age or more frequently than typical women.
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- Didn’t Angelina Jolie write about this? She was in a similar situation: both her mom and an aunt had died very young, and she got tested. When she found out she carried the gene, she decided to have a mastectomy, before breast cancer even had a chance to develop.
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- I don’t understand this. I don’t smoke, I exercise three times a week,and I eat plenty of fruits and veggies. How could my body betray me like this?
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- And these screening measures seem really drastic!
- Should I be thinking about having a mastectomy, or my ovaries out? I’m not even dating, let alone ready to think about getting married!
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- But I suppose I have just always assumed that I would some day get married and have a family. Am I supposed to just let go of that dream? This is too much to think about!
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- Yeah, I remember. I felt fortunate that I had my mom around until I was in my 20s, but I also remember how terrible it was watching her suffer.
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- I’m glad you told me. Even though it’s scary, it’s good to have someone to talk to about it.
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- I was so worried about my kids that I decided to go ahead and get the test. My mom died when I was only 10, and I wouldn’t want to do that to them.
- They’ve had really great advice about how to talk about this with Josh and the kids. And when one of the group was sick, we all organized carpools and meal delivery during her chemo. It felt good to pitch in.
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- And your doctor can also talk with you about treatment options. It may be possible for you to harvest some eggs, so that you can have the option of having children later.
- I suppose it’s better to know than not know. And if it turns out that I do carry BRCA variants, then there are things I can do even short of having a mastectomy. I can really double down ontrying to live a healthy lifestyle and make sure I keep up to date on myscreening.
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- Yeah, my genetic counselor also told me about this great support group for women who carry BRCA variants. I’ve learned a lot from them.
- And someday when I meet someone special, I will know that I’ll have to have really honest conversations with them about planning a family.
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- The notion of biographical disruption has been helpful inunderstanding how a person’s identity changes in response to a major illness. People at risk of becoming ill may have different needs, and they may process information differently. Adapting our understanding of biographical disruption could help doctors and patient advocates develop better counseling, outreach, and social support programs for patients at risk.
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- So, I know this is probably very upsetting, but I wanted you to know.
- Yeah, I completely understand. I was really overwhelmed, too. But my doctor referred me to a really great genetic counselor who explained everything before I even decided to get tested.
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