Friday, February 5, 2010

A Survivor who didn't Survive

Celebrities! They're just like us! The pick their noses while they pump gas! They wear slippers and a robe to grab the newspaper at the end of their driveways! They buy milk at the grocery store! Tabloid magazine devote whole spreads to photographs of celebrities doing "normal people" things, and we find it fascinating because the people we see on our televisions and in our movies must be so much more interesting, so much more evolved, so much less human than we ordinary, anonymous, everyday folks. And so it shocks us when a celebrity gets sick. And it effects us when they die. They are not immortal, though we ascribe them that quality.

I don't watch Survivor, so the name Jennifer Lyon meant nothing to me until I read her obituary: diagnosed with stage III breast cancer at 32, dead at 37. Apparently, she made it far in the competition and was well liked by fans. But despite her fame, despite her having appeared on our television screens, she still died. Celebrities... they are just like I could have been.

I'm an armchair genetic mutation spotter: I diagnose fictional characters in modern literature and I diagnose dead reality television stars. I can't find any confirmation that Jennifer had a BRCA mutation, but the evidence suggests something was amiss: she was diagnosed so young, she had an aggressive cancer, she relapsed within five years, and then the disease spread throughout her body and she died. 32-year-olds shouldn't be diagnosed with cancer and 37-year-olds should die from it. But whether or not she had a BRCA mutation, she was also failed by our health care system. When she first found a lump, she was uninsured, so she did not seek treatment. By the time she found another, she was sure it was not scar tissue from her breast augmentation (as she had originally written off the first abnormality). And she was right: it was stage III cancer. She went through chemo and started a course of Tamoxifen, but in the end, it wasn't enough.

I've written before about the new mammography guidelines, and I've written before about the need for a public insurance option. But Jennifer's story gives me an opportunity to again note the shortsightedness of the new rules and advocate for greater access to insurance for all. According to a recent study, 35% of uninsured breast cancer patients die within five years of diagnosis compared with 23% of privately-insured patients. So Jennifer was already at a disadvantage. Additionally, because she didn't seek help when her cancer may have been caught at an earlier stage, she had only a 54-67% chance of surviving stage III cancer to begin with. She had a lot of handicaps she needed to overcome; unfortunately, the disease and her circumstances didn't allow it.

RIP Jennifer. You were too young.


  1. I just read your blog Steph & I cried. It's very very sad. You are doing a great service by bringing this to everyones attention. Keep up the good work.
    I too hope you rest in peace Jennifer--you died way too young.
    Tobey Rdh

  2. Hi! I found your blog recently (I think you had commented on another blog I read) and I've read through quite a bit of what you've written. I really like your writing style. I'm glad you came through your PBM well and are recovering. I'm BRCA1+ (no surgeries, though I've been going through increased surveillance for about 1 1/2 years). I'd like to add you to my blogroll, if you don't mind.

    Here's a video of Jennifer Lyon talking about her breast cancer: Apparently she did go to a doctor, and it angers me so much what her first doctor told her. She had an aunt who died of breast cancer at 34, yet was told that since it was a paternal aunt, her doctor wasn't concerned. In fact, the doctor passed off her lump as nothing at first. I tested for BRCA mainly because of a paternal aunt who passed away at 33 of breast cancer, and I am so, so glad that my doctors were educated enough to know that BRCA can be passed through the father's side as well. While I have never been diagnosed with cancer, I shudder to think what might happen to those of us with paternally inherited BRCA genes if we had all been told what Lyon had been told.

  3. I inherited my BRCA mutation from my dad, who inherited from his dad, so that is a issue (and a source of frustration) near to me. Hereditary breast cancer doesn't skip generations -- it just hides in men. Glad to hear I've got another mutant helping spread the word.