Tag Archives: statistics

10 Things Not To Say To Someone With Cancer

You’d think having breast cancer would give me some idea of how to react or what to say when I hear that someone I know has cancer, but it doesn’t seem to work like that.  I’m still sometimes just as mute and aghast as the next guy. But — at the risk of paralyzing you further when you are next faced with talking to someone with cancer — I can help with what not to say.  Here are some pointers:

1.  “Don’t worry, you’ll be fine.” Please, make an effort. Use your imagination.  And above all, don’t be dismissive of the person’s legitimate right to feel totally freaked out.  Cancer is serious business. It’s Darth Vader, the Bogeyman and weird Haitian voodoo hexes all rolled into one.  Let’s respect the fear, but nurture the hope.  Try telling the person that you’re sending her prayers/energy/good mojo/whatever. Plagiarize — grab a quote from someone she’s inspired by (Winston Churchill’s “Keep buggering on” works for me.) Or, if you can pull it off, make her laugh, like my friend Ben did when he said: “I can’t believe it picked you… I feel sorry for the cancer.”

2. “My cousin had cancer and she never missed a day of work, even when she was having chemo.”  Well, la-tee-da! I hate her already. This is called Lance Armstronging.  We are not all going to win the Tour de France 150 times during our cancer treatment.  I do understand the intention to show by example what is possible; that a person can beat her cancer and it need not even slow her down, rah rah sis boom bah.  But go gently, brave cheerleader, if you’re going this route. Avoid Lance Armstronging.

3.  “You should try a macrobiotic diet/seeing my guru/eating all your meals while standing on your head/etc.”  There are many things outside of conventional medicine that can have amazing results.  If you want to suggest something that might involve a big change for a person with cancer, remember that she might be trying just about everything she can manage already.  You can inadvertently set her up to feel like she’s not really “fighting” if she doesn’t take your advice and meditate with a Shaman in Goa.  If you passionately believe in a certain remedy, try an open-ended approach: “If you’re not really into talking about this let me know, but I heard of something I wanted to share with you, and you can feel free to take it or leave it.” 

4.  “You have to beat this for your daughter/son/kids.”  Oh really? Because I wasn’t already lying awake at night in a cold sweat, just praying I’m going to see my child’s 10th birthday/bar mitzvah/wedding.  But thanks for pointing it out, and adding that extra layer of self-blame if my next test results aren’t so hot… I know that this sort of statement is intended to get the person to draw on her inner parental love-power and pull through for the sake of her kids, and yep, that ferocious love is a pretty potent force.  Nobody, sick or healthy, wants to imagine not being there as their children grow up. Sadly, you can do everything in your power to beat cancer and still not win – but is that because you didn’t love your kids enough?

5.  “I read a study that said __________.” Please see recent blog posts on the dangers of interpreting statistics and studies.  If you read something that is interesting or that you think is important, tread very carefully when bringing it up with someone who has cancer.  Even if you’re a doctor, your information – or misinformation – can have a huge psychological impact, and not always for the better.

6. “Think of cancer as a gift/lesson/opportunity.”  Let me ask you this, oh spewer of bunk, which kind of gift would you prefer: a bracelet/flowers/spa treatment… OR a disease that robs you of your health, job, hair, vitality, fertility and possibly your life?  Need some time to think it over?  Let me tell you what I would choose: not to have cancer ever again anymore for the rest of my life.  That is a gift. However… there was a woman I knew and admired and loved like a second mom, and she used to refer to her cancer as “a gift wrapped in barbed wire.” This acknowledged that the experience of cancer did bring many positive things (inner strength, deep connections with other people, perspective on life – whatever) but that it was painful and hurtful and excruciating to get to those things. So in Mary Sue’s honour, I will allow this: if you really, really insist on suggesting that cancer is a gift, please emphasize that its one that comes wrapped in barbed wire and rolled around in a lot of crap, resembling a giant, spiky and foul-smelling truffle. 

7. “Should you be having that glass of wine / cheeseburger / Marlboro Light / triple sundae with chocolate sauce / tequila body shot?”  (Gosh, that does sound like a good time, doesn’t it??) OK, we all know that there are things that aren’t good for us; things that studies show are linked to different cancers; things that we should avoid.  Personally, when I indulge in these sorts of things from time to time I do so because I want to feel normal.  Because they make me happy.  Because I’ve had a bad day, dammit. Whatever the reason, I probably already know I shouldn’t be indulging, and I probably don’t need you to call me on it.  My standard line is always, “You just worry about yourself, I’ve already got cancer.”

 8. “Stay positive, it’s all in the attitude.”  Before you say this, consider: Have you ever tried staying positive when all your hair falls out and you’re afraid of dying?  Actually, this statement is not necessarily a no-no, but it’s a really tough call, because while keeping a positive attitude is important, it’s not necessarily going to affect your longevity.  Apparently it’s authenticity that counts – feeling what you’re feeling when you feel it.  Nobody can be positive all the time, so why should someone with cancer be able to constantly maintain a chipper outlook?  Instead of telling someone her health depends on her positive attitude, just try doing what you can to make her life easier when she’s feeling like crap.

9. “We didn’t invite you because we thought you wouldn’t be up to it.”  Don’t. Ever. Do. This.  Always invite the person with cancer even if you know she’s bed-ridden.  Make sure she knows that there’s no pressure to attend, but that you wanted her to know she’s included anyway. Keep inviting her to everything you would if she weren’t sick – the block party, the girls’ lunch, the political rally, the tarts-and-vicars soirée – everything. Let it be her choice if she can make it or not. You’ll be making her feel that she’s still part of the world; still herself.  And besides, you never know when she might actually be up for one of these events.

 10. “So-and-so said that getting your kind of cancer at your age is the worst because it means your chances of survival are terrible, and I was like, Oh this is so upsetting, why are you telling me this??” Why indeed, would anyone ever tell anyone that? Why would someone then recount it to the person with said “terrible chances of survival?”  Yet someone really did say this to me once, without even realizing what she was saying. And I love her still, in spite of it. 

I guess I wanted to end with that one to make the point that you can’t really say the wrong thing if your heart is in the right place.  I mean, you can obviously (and quite spectacularly!) but it’s not the end of the world. And it shouldn’t be the end of a friendship.  Love is clumsy sometimes. There’s no perfect thing to say, because everyone is different, and everyone’s cancer is different.  Maybe the best approach is “I love you and I hate that you have to go through this, but I’m here for you.” 

And then don’t forget to actually be there.

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23% Stat Clarified!

A big thank-you to everyone who weighed in & commented on the ‘23% chance of survival’ issue — I loved the story of a 9-years-and-counting survivor of Stage 4 HER-2 positive cancer on the Tell Her-2 website (thank-you Carol!) and had a few more amusing e-mails from friends, like the one suggesting that 23% of people are just talking out of their @$$es.

But this comment from Pam was the icing on the cake, the cherry on top, la piece de resistance

“I think the study that was referred to in the Ottawa Citizen was this one:
http://www.mdanderson.org/newsroom/news-releases/2008/early-stage-her2-positive-breast-cancer-patients-at-increased-risk-of-recurrence.html
It’s important to note that they refer to a 23% rate of recurrence for HER2 positive breast cancers NOT a 23% survival rate. Hope this helps!”

Oh it helps, Pam! Enormously, massively. Curtains for all but 23% of us?  Totally scary.  But a 23% chance of recurrence? Pfffft – whatevs, already living it.

The study’s statistics on recurrence and survival rates for HER-2+ vs. other kinds of breast cancers indicated what I already knew; that it’s not quite as rosy for us HER-2 types.  But it sure as heck isn’t as grim as a 23% vs. 90% chance of survival:

“In those analyzed with HER2 positive tumors, the five-year, recurrence-free survival was 77.1 percent; in contrast, HER2 negative patients’ recurrence-free survival was 93.7 percent. Five-year distant recurrence-free survival was 86.4 percent in women with HER2 positive tumors compared to 97.2 percent in women with HER2-negative tumors.”

I hereby apologize to the authors of the study for calling you hacks.  I was a little upset at the time.  I still remain steadfastly suspicious of all statistics, but I now realize you nice Texans were actually just trying to get women with early-stage HER-2+ cancer access to Herceptin, and I wish you every success in that noble pursuit.

There remains the issue of just how grossly irresponsible the Ottawa Citizen article was.  I’m trying to imagine myself as that writer, on deadline, trying to put together a positive piece about a new service for people with some kind of breast cancer that I’ve never really heard of, and oh! Look, here’s a study!  Let me see, should I report that there is a 23% chance that HER-2+ cancers are going to come back? Orrrr, hang on a minute, maybe if I just warp it beyond all recognition to say that only 23% of these people with HER-2+ cancer will live, that would be better.  Recurrence is just so, I don’t know… vague and neutral.  Death is so much stronger.  Yep, I think I’ll just go with death.  Great, all done!  And I still have time for lunch.

Rather alarming. Rest assured my letter to the Citizen to requesting a correction is already underway.  Thanks everyone for getting me through this darkness and out to the light at the end of the tunnel of incorrectly reported stats.  That’ll learn me to pay attention to numbers. I’ll stick to words from now on, they’re so much more reliable. Can’t put a number to hope and courage and chutzpah, can you?  I rest my case.

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Make That 50%

I don’t know how long the crocodile hunter thing is going to sustain me, so I thought I should ask everyone to give me their own versions of “23%” – bogus statistical probabilities to help me keep perspective on that nasty stat that threw me for such a loop last week. 

My husband volunteered that there is a 23% chance the average person would lose their mind before actually being able to understand statistical mathematics. My friend Sharyn said there is a 32% chance that the reporter who quoted the stats is dyslexic.  But the best by far was when she added that there is in fact no 23% — that it’s always and only a 50% chance for any of us — you either live or die, that’s it.  Smart cookie, that Sharyn.   I give her a 23% chance of getting all verklempt when she reads this. More likely she’s saying “That’s right. Atta girl.”

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Tell HER-2 Stick Those Stats Where the Sun Don’t Shine

You know what I usually do when something really upsets me?  I usually sit down on my kitchen floor and cry.  It’s not the most comfortable place to cry (that would be my husband’s arms) but I often end up there.  I seem to have a need to get low to the ground.  Get terra firma (or kitchen tile) under me so I don’t wobble and break like a teacup. 

I tell you this because I recently spent some time on my kitchen floor, right after reading this story in the Ottawa Citizen, which talks about a new program for young women with HER-2 positive breast cancer.  “Sounds great,” I thought.  “Maybe I’ll get involved,” thought I.

And there, smack in the middle of the article was this line:

“…it’s easy to see why HER2 is so feared: In a study last year at the University of Texas, women with early stage HER2-positive tumours were reported to have a 23-per-cent survival rate, compared with 90 per cent for breast cancer patients who do not test positive for the protein.”

Plop – straight to the floor.  Tears (big fat ones) and terror (also robust) ensued. How dare they?  How dare they just hit me with that 23% when I really and truly believed that I would beat this?  Believed it to the point that I publicly chastised anyone who didn’t believe it.  I more than believed it – I was full of conviction; I knew I would beat it.  And then, one little line in one little article sends me to the kitchen floor, my conviction shattered and my mascara all over the place?? 

Yes, actually.  That’s all it took.  Suddenly I was aware that my steely resolve and hell-bent determination are a little more fragile than I realized.

Slowly, the fatso tears became little spatters and then stopped altogether and reason – or my version of it — took over. I concluded that deeming the University of Texas researchers a bunch of hacks was appropriate.  As was feeling very unkindly toward the reporter who included that line in her story.  Thanks a lot, stupid no-cancer-having lady, for your blithe reference to these death stats concerning something I have to live with every day. Why don’t you go back to writing about five great picnic spots in our nation’s capital and leave me to my shattered optimism.

There – being nasty made me feel better already.  Next I went into action mode, pouring myself a nice big glass of wine and Googling all the statistics for various kinds of death, thinking surely it’s harder to survive car accidents and parasitic infections?

That’s when I found a story about that crocodile hunter guy. Yes, the crocodile hunter guy.  I know this sounds completely irrelevant, but stay with me:  There he was, Steve Irwin, cheerfully bounding around swamps and wrestling dangerous reptiles one day – then suddenly pierced through the ticker by a normally gentle sea creature the next.  He didn’t know what was going to happen to him when he went into the reef that day.  He probably had fewer reservations about swimming with those big portobello mushrooms than he would ever have had about hanging out in croc-infested swamps — and you can bet the stats for crocodile deaths are much higher than for death-by-sting-ray. 

Which is when I realized that statistics are for morons.  In reality, you can never know when or how you’ll die, you can only choose how you’ll live.  Some people wrestle reptiles, some wrestle cancer.  In the end, the obvious danger may not be the thing that strikes you down.  After all, that’s why I still wear a bicycle helmet.

So, thank-you dearly departed crocodile guy – I bet you never thought you’d come to the rescue of a Canadian girl with HER-2 positive cancer.  Life is full of surprises, and stupid statistics abound, but I am going to live.  This cancer is not going to win. I knew I cracked open the Australian wine for a reason.

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A Bad Day

It happens.  Well-intentioned people can say the most astonishingly insensitive things; people in possession of big hearts and sound minds can sometimes be devastatingly negative.  Short of punching them in the nose, what do you do?

 

The other day a dear friend said the following to me:

 

“I was talking to a client who has breast cancer and I told her about you and she told me it’s really not good when you get it when you’re young, the chances of surviving are really not good!  And I said, Oh no, why are you telling me this?!?”

 

More to the point, why was she telling me this??

 

Good person, bad judgment. 

 

I tried to brush it off, but the truth is I felt robbed of a lot of the optimism that has carried me through this fight. I just want to walk away from this time of having breast cancer and never look back.  Those words made me feel that I can’t do that.

 

(My mother texted me after I told her this little tale: “I will kill her with my bare hands and pull her tongue out.”  That’s mothers for you – they just rock.)

 

Today when I went in for treatment I asked my oncologist, who very reasonably told me that there are too many variables and factors in each case to make a generalized statement like that; that there are too many different kinds of breast cancer…  That yes, of course I am at greater risk of recurrence (having had breast cancer, having had it travel to my lymph nodes) but that I am being treated “curatively.”  Ultimately she can do a statistical analysis of my particular case, but, she explained, the results are just statistical, and many people prefer not to be given those stats.  Then I asked her whether I could consider having another child if ovarian function returns — she said I need to consider the probability of recurrence when I make that decision.

 

For the first time in a long time, I was a mess today.  The nurses who have treated me for more than a year were surprised to find me in a tearful heap in my giant recliner as they hooked me up to my IV.  Luckily they had pecan pie on hand. 

 

There was no bad news today – if anything my oncologist was reassuring.  I’m just having a bad day.  A bad cancer day.  There are good days and bad days, and this one just isn’t a good one.  But in general, I have far more good ones than bad. And maybe tomorrow will be a good day again.

 

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