Breast Cancer Awareness Month: Genetic Testing for Different Reasons Than You'd Think

7 years ago

Years ago, a woman with a bad personality told me she hadn’t enjoyed walking through the halls at M.D. Anderson Cancer Center.

“It was so depressing,” she said.  “All those cancer patients!  They look so awful — pale, exhausted, bald.  I couldn’t wait to get out.”

Now, here was a dilemma.  I could either take the high road, I figured, or be a bitch.

Talk about an easy choice.  “I guess you didn’t realize,” I said, “that I’m a cancer survivor, too.”

There was a strained silence.  She finally ended it by saying she guessed she’d offended me.  I said I guessed she had.  Maybe in the future, I hoped, she’d learn to think before she aired an opinion that could hurt other people.  But I knew she wouldn’t.  She wasn’t the kind of person who worried about others’ feelings.

Still, I could understand her discomfort.  Stepping into any kind of room with cancer patients is almost always difficult and emotional.

Today, as I waited for an appointment at the oncology center, I looked around the room the way I always do.  I noticed the new magazines, the new displays.  (A Texas Oncology T-shirt?  Who on earth wears that?  Note to marketing department: This may be a little over-zealous.)

But most of all, when I’m in an oncology waiting room, I want to talk to the other people there, to make some kind of connection with them.

I’m like you, I want to say.  I may look healthy.  But I’ve been there.  I understand what you’re going through.

That’s half-true, half-untrue.  I understand what some of them are going through.  But there are so many others — with different cancers, different prognoses, different histories – whose lives I can’t begin to imagine.  I once had a bad year that ended with what appears to be a good outcome; they may never be healthy again.  It’s also true that I want to feel that sense of community — but I also want to bolt from that room and never go back again.

A few seats away, a teenage girl sits with an older woman, filling out a questionnaire about her family’s cancer history.  The woman helps her spell all the various forms of cancer her family members have had:  lymphoma; uterine; melanoma.  The list rolls on, longer and longer.  Breast, lung.  A horror story of a family history.

“Are you here for genetic counseling?” I finally ask them.

They shake their heads no.  The younger woman has some kind of blood problem.  They’re here to have it checked out.

“But I’ve had breast cancer,” the older woman says.  “Two years ago.”  She smiles and points to her short hair.

“Me, too,” I say.  “Twelve years ago.”

The other woman smiles harder.  “I can hardly wait till I can say that, too,” she says.

My name is called and I go into the nurse’s office.  I already know what I’ll be told: My genetic test came back negative.

“It’s good news,” the nurse had told me over the phone last week.  “Really good news for you and your daughter.”

Yes.  I know that.  It means that, at a very young age, my daughter won’t be plunged into all kinds of decisions about her own genetic testing, stepped-up surveillance, possible prophylactic surgery, prescribed drugs.  I know that.  I know it’s good news.

So why does it make me feel so emotional and uncertain?  I guess it’s because the world of science and medicine is telling me and my daughter what it knows now.  It’s something — but it’s not enough.  It’s a semi-tidy bit of certainty in an overall mosaic of family history, chance, environment, an unknowable future; a present that’s a little better known — but still unclear.

Even with this news, I still can’t stop looking over my shoulder at my own horror story of a family history: mother and my only two aunts with breast cancer; grandmother with colon cancer; grandmother with lung cancer; aunt who survived breast cancer only to die from pancreatic cancer.  Sure, I didn’t carry one of the known genes.  But didn’t this family history mean something?

I’d signed up for a genetic test under false pretenses, I finally realized, as I left the office.  On the surface, I’d signed up to find out whether I had one of two genes that indicated hereditary forms of cancer.  But what I really wanted to know was something far greater, far more complicated, more important: Is my daughter going to be safe?

When it came down to it, I hadn’t wanted science.  I’d wanted magic.  But isn’t that what every mother wants?

Ruth Pennebaker, who blogs at, is the author of the novel WOMEN ON THE VERGE OF A NERVOUS BREAKTHROUGH.

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