What not to say to a cancer patient

This is part 2 of the article from author Dr. Mindy Greenstein, on what not to say to a cancer patient.

Cancer Series II: The First Question, or, What Not to Say to a Cancer Patient

For cancer patients, is hell really other people?

Published on May 18, 2011 by Mindy Greenstein, Ph.D. in The Flip Side

 If you read my last cancer blog (What Do I Say When Someone I Care About Gets Cancer), you probably know that I won't actually tell you what not to say to a cancer patient.  That's because words without context are meaningless.  "You'll be fine" may feel heartening one day, and dismissive another.  For me, though, there was one question I came to loathe, not the question itself but what it represented. 

I didn't loathe it the first time it was asked, or even the second, maybe even the third.   But by the time I realized that this was going to be the first thing every single person said to me upon learning of my breast cancer diagnosis, I often started to cringe as soon as I heard the words starting to form.

            

So what was so important, it was the first thing everyone had to know?  It was this:

           

Does it run in your family? 

Seems innocuous enough.  Let's unpack it, to understand why it came to bother me so much.  A wise teacher in graduate school was fond of telling us burgeoning therapists,  "It's not what you say to patients that's important, it's what you say next."  Perhaps that's why my reflexive cringe response quickly dissipated when a couple of my friends followed up with an explanation for their question: if my answer had been yes, it does run in my family (it doesn't), they would have made sure to suggest I have a genetic workup in order to see if I had the BRCA gene mutation, which would have affected my treatment significantly.

 So why was everyone asking?  Perhaps a typical exchange holds a clue:

Friend: Does it run in your family?  It doesn't in mine.

Me: Not in mine either.

Friend: Really?  That's surprising.

Me: Actually, the vast majority of breast cancer is random, with  no significant  family history. (usually evokes a shocked response)

Friend: They found it on your mammogram, right? (this was the  second question almost 75%  of the time) I just had a clean  mammogram X months ago.

Me: Actually, no. I had a clean mammogram just a few months ago, and a clean gynecology  exam only a few weeks ago.  Mammograms can miss 1 out of 5 breast cancers.  I found it on a self exam.

Friend: What's your doctor's name?

Me:  It's actually not the doctor's fault. I have a rarer kind called lobular carcinoma, that's  hard to catch because it doesn't grow in lumps. It just feels dense, like the rest of my  fibrocystic breasts. I'm lucky I just started doing self-exams again. (In fact, it was my first self exam in years, even though they weren't being recommended to women anymore; I'm glad I didn't read that guideline until after mine saved my life; I found the  one area that hadn't been dense in the past—the upper quadrant—now felt the same as the  rest of my breast)

Friend: I never do self-exams. (almost 100%'er)  But I have a very  good doctor. (One friend's doctor even swears he's never missed a breast cancer)

In other words, rather than wondering how I was doing, they were actively assessing their own chances of getting the disease: Doesn't run in my family, I get regular mammograms, my doctor is probably better than hers, etc...  Of course, I made sure to give them as little comfort as possible: Doesn't run in my family either, I had a clean mammogram too, it's not my doctor's fault she missed it....  But, at heart, these questions reinforced my sense of isolation, as I could see how my very existence scared the people around me.

            

Does that mean you should never ask an afflicted friend if cancer runs in his or her family?  Of course not.  They're only words.  The real issue is what's underlying the question - do you have advice to offer depending on the answer?  Or are you just responding to your own fears and forgetting your friend's needs?  The same is true for the ever popular "You need to stay positive!" Are you reminding your friend that there's hope, or are you warning her that she better get an "A" in coping, and that you can't tolerate hearing about the bad times?  If the latter, perhaps a nice "How is it going these days?" would go a long way instead.  But then, of course, you have to be prepared to listen to the answer.           

           

 Despite the upsetting moments, Sartre was still wrong—Hell was not other people, at least not for me.  I came to accept that my cancer scared them, and sometimes they unwittingly made me feel bad as a result.  But those feelings paled in comparison with the way many of them gave of themselves so generously—traveling hours across state lines to visit me after surgery, taking care of my kids during bad chemo days, cooking my family's dinner, driving hours out of their way so that I could go on vacation and still get into the city for treatments, listening to me whether I had a "good" attitude or not, sending me the best joke emails that actually made me laugh. 

They reminded me on a daily basis that a world that contained people like them was one I wanted to stay in for a very long time.