What Not to Say to a Cancer Survivor

susie lindau boob report picture with plants in front of her boobs before double mastectomies breast cancer

I’m almost five years cancer-free and have survived all kinds of off-hand comments. Everyone wants to say the right thing to a cancer survivor, but sometimes not saying anything would have been better. Some were well-intentioned while others seemed like heat-seeking missiles. When that would happen, I would go to a very dark place. A place filled with fear. A place without hope. A place I called The Hole. Dread and worry would swallow me. Sometimes for days. All because of some stupid remark.

It seems silly and yet there were times when I felt as if a giant C for Cancer appeared on my shirt. Some people avoided the topic altogether. Some avoided me like I was contagious. Others only wanted to talk about it.

Here’s the delio. Most survivors are cancer-free after surgery with or without chemo and/or radiation. We want to keep it that way. It’s funny how people treated me like I still had the horrible disease.

I’m here to make it easy for you next time you to talk with someone either facing the challenge of battling cancer or thriving another day toward that super spectacular five-year mark. Mine is on June 1st!

Everyone is different. Some of these comments may not bother someone else. They sure bothered me!

6 things to avoid saying to someone who has survived cancer:

1. I had a mom, aunt, sister, uncle, cousin (or all of the above) who died of breast cancer.

Now granted, I’m almost five years out and can console the person who is probably still reeling from the loss of a loved one. I’ve lost a lot of loved ones in the last two years. It’s a terrible thing. But most first and second-year survivors are still pretty freaked out. We schedule blood tests every six months. We worry A LOT! We don’t want to hear about how fatal cancer is. We know all about that.

Everyone likes to relate in some way. BUT don’t open your entire “cancer file.” I’ll give you some suggestions in a minute.

2. You know that -blank- causes cancer.

I’ve been cornered at cocktail parties. Parties where I was having a great time and had finally stopped thinking about cancer for five minutes. Usually, there’s no preamble, just an “Oh, my God. I know what caused your cancer.”

Thing is, I used to beat myself up believing I did this to myself. Being angry doesn’t solve anything. Regret is the fastest and easiest way to waste precious time. MORE TIME IS WHAT ALL SURVIVORS WANT MOST. There’s no way I’ll ever know why I got cancer. I was super healthy, ate organic, and used green cleaning products.

Realize that cancer is not caused by stress. It is caused by a perfect storm of several different factors. AND everyone has different strengths and weaknesses. What one person can tolerate, another might not.

Several years ago, I discovered the link between alcohol and SEVEN different kinds of cancer including breast, so I stopped drinking alcohol.  Yes, wine is alcohol and definitely included.

When I bring this up with friends, I always preface it with, “Everyone has their own sensitivity. I stopped drinking alcohol and eating soy or anything else that would raise my estrogen level since that’s what my cancer ate. As soon as I made the change, I stopped worrying.” It’s true. It was so worth it!

3. I know someone who got cancer again right before her five-year check-up.

Really? How was I not going to be haunted by that? Was it a warning? There are no guarantees. Yeah, I get that. But I don’t know this survivor’s stage or her circumstances. Why freak me out like that?

EVERYONE’S CANCER HAS ITS OWN DNA. I hate to shout, but please, for the love of all that is holy, don’t compare one person’s cancer to another. EVER.

4. I want to introduce you to my friend who had cancer.

The last thing I wanted to do in my first year of surviving was awkwardly meet someone and make cancer the focus of our first conversation at a party. Again, I can totally handle it now. But it’s extremely personal. Everyone goes through cancer differently and on their own terms if that’s at all possible.

Instead, mention that your friend is at the party. If we are ready to talk about it, we’ll ask to be introduced. Problem solved!

Everyone has their own degrees of openness.

At first, I wanted people to acknowledge my diagnosis, but a minute or two was long enough. A year later, you couldn’t shut me up! Some survivors are extremely private and swear me to secrecy after our discussions. I get that.

The very worst comments hit me in two questions:

5. How do you know you won’t get breast cancer again?

“Because I don’t have any boobs,” I said and smiled thinking I had the guy.

6. Yes, but you could get it somewhere else.

My heart dropped into the basement of my gut. What a dick. Why would someone say that? I went so far down the hole, it worried me for years.

Now I take it as a challenge.

Yeah, dude, I’ll show you.

Being human can get us into trouble.

When I published my first Boob Report, my stats boomed. They continued to soar as I chronicled my journey.

I told my oncologist about it.

“You know that will change,” he said. “Your views will drop as soon as they realize you’re going to live.” His comment cracks me up every time I think about it.

Why is that? People didn’t really want me to die, did they?

Of course not… I hope.

Why people say what they say:

People love drama.

Like any good thriller, the higher the stakes, the more our muscles tense and our heartbeat quickens. I know. I write them. We love tension and challenge. We want to find out what happens.

Will the hero live or die?

In that first Boob Report, Roadblocks and U-turns, I announced my cancer diagnosis. Being a blogger rocked. I didn’t have to call anyone! Anyway, I equated my shock to Monty Python’s Flying Circus complete with the giant thumb and forefinger. Here I was on stage starring in my own life when that damn hand came from nowhere and flicked me into the cheap seats.

The opposite happened. I drew a lot of attention. I know it was sincere and full of concern. I appreciated it. People prayed for me. My tumor shrunk a little bit before the surgery. Amazing!

What we need to hear:

Rarely did anyone ever say to me, “You’re going to be fine.” How those five words would have restored me.

We don’t want to hear about your dead relatives, or what could have caused our cancer, or that it could come back. We may not want to be relegated to a corner of a room to talk about breast cancer at a cocktail party with someone we’ve never met.

Instead, ask how we’re doing. We totally appreciate that! Then move onto another topic. We’re still part of the living. Maybe we’ve been on vacation. I traveled to several countries in Europe six weeks after my double boobectomies. Maybe we’ve been hard at work on a project. I wrote a couple of books and over six hundred blog posts in five years. Ask about our families, our plans for the future.

GIVE US HOPE.

Give a survivor hope. As they light up the room with their smile, The Hole will magically disappear. Writing that last line gave me shivers.

Are you private or do you like to share in hope of support when life goes south?

What not to say to a cancer survivor. Click for what to avoid and what all survivors want to hear!!! Breast cancer inspiration and awareness, health, life lessons, personal growth and motivation, positivity, self care #breastcancer #cancer #friendshipgoals #support #lifelessons

Click for more Boob Reports or more Wild Adventure, inspiration or travel.

Related posts:

Boob Report – Anxiety and the Fantastic Five-Year Finish Line

The Boob Report – The Dirty Little Secret about Alcohol

An Open Letter to My Boobs

An Open Letter From My Boobs

 

106 thoughts on “What Not to Say to a Cancer Survivor

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    1. That’s amazing, Sue! I have traveled more than any other time in my life! I didn’t want it to define me either, but Cancer taught me lessons I never would have learned and for that I am grateful. Fodder for another blog post. Ha!
      Thanks for reading!

      Like

  1. Soooo happy to hear you are Five Years Free! Woot! Woot!
    Thanks for the primer… accurate knowledge is always a good thing.
    And thanks for voting for positive attitude from people. When a friend told me she had cancer I didn’t believe for a minute I would lose her to it so I was positive and upbeat. I have worried that she might have been hurt thinking I was downplaying her crisis.
    Anyway, thanks.

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    1. Thank you so much! I’m pretty sure my surgery was on the 29th, but I take my last anti-estrogen pill on the 30th. I can’t wait!!!

      It’s such a tight-rope walk. There’s no way to really know where the person is in there mind or journey. I think erring on the side of being positive, supportive, and sensitive is always best!

      Liked by 1 person

  2. Congrats! Mine will be September 10th…. as to the post, I have had similar experiences. I thinks lot of people as we say in Italian, “open their mouths and let words come out”

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  3. Not to act as if I didn’t ever read your blog post, but my Sis has cancer (Brain and Colon) and is going through it rough right now. I say that to let you know I understand and your article helped to arm me for the future.
    Scott

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    1. I’ll send her some positive vibes and prayers, Scott.

      It occurred to me that we can give hope to ALL cancer patients. Time is relative. All anyone one of us has is now. We can still plan for the future, have hopes, and dreams. Miracles happen every day!

      Liked by 1 person

  4. First of all, congratulations on reaching the 5 year mark & to swallowing that last anti-estrogen pill! My personal policy around discussing the big C is to reach out & acknowledge it rather than dancing around the elephant in the room. From there, I gauge how I proceed by the direction of the person I am talking to. If they want to talk, I am happy to listen, if they need a reassuring hug, I am only too happy to oblige, if they want to talk about something else, I am good with that too.

    Although sometimes we think we are being helpful in offering our words of wisdom, sometimes it is best to just listen.

    To many more years of good health my friend!

    Like

    1. Thanks so much!!!
      Your words gave me shivers, Lynn. That is such great advice! I think I always blabbed on about it whether I wanted to talk about it or not because I was so nervous, obsessed, embarrassed by it. That said, most people would give you a vibe. I love how you just pay attention and respond accordingly! How cool are you???

      Liked by 1 person

  5. for me I hated for my friends or family to say “Come on…you can’t isolate yourself from the world. Let’s do a movie and lunch Saturday”. Sounds great right? but I got this text on my way to the breast surgeon appointment as I was drawing on some eyebrows and trying to find which head wrap….I had looked in the mirror and had just finished crying my eyes out because I was so tired! I was finishing chemo but going to meet the reconstruction surgeon “just in case I wanted to pursue reconstruction”….I texted back to my cousin that I would think about it to which I think I got a text back saying “No we are going to pick you up”. I took a quick picture of myself in all my baldness with no eyebrows and my face still puffy from crying and said “This is me today. This is how I feel today. Please allow me the courtesy to feel sad today. I will be better tomorrow…and NO – do not pick me up”. I am 6 months cancer free…in the infant stages of recovery and I am happy and have more energy but I am also more assertive which I never was. Cancer has taught me many things and one is to finally at 64 FIND MY VOICE!

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    1. YES! YES! YES! Cancer will teach you all kinds of important lessons, like living your truth, cutting negativity from your life, and hyper-focusing on goals and what makes us happy. We don’t have time for anything that holds us back, right? (Stay tuned for my next Boob Report post!)

      You will kick cancer like so many others. In some ways, I look at my diagnosis as a gift. It’s all about getting through the treatment and then living your life!
      Thanks for weighing in, Melinda!

      Like

  6. “EVERYONE’S CANCER HAS ITS OWN DNA. I hate to shout, but please, for the love of all that is holy, don’t compare one person’s cancer to another. EVER.” Yup. That’s it in a nutshell.

    I don’t need to be reminded that people die from cancer. My own mother (who I miss every single day) died of cancer. That doubles my stress level. “Oh my god, I’m going to die just like my mother.”

    I have to say that most folks I talked to about it – when I was finally able to talk about it, it took quite a while – were very positive and said very helpful supportive things. Like you, I am now able to talk to people more openly about the experience and how horrible it is, but during treatment, no way. I was reminded every Monday at chemo just exactly how awful cancer is. And every time I looked at my bald head in the mirror. And every time I couldn’t eat because I thought I might throw up. I don’t need to be reminded that cancer sucks.

    This is a very helpful post. I hope it goes viral and more people can understand how to help. Thanks for writing it.

    Patricia Rickrode
    w/a Jansen Schmidt

    Liked by 1 person

    1. I just got shivers, Patricia! You rock and kicked cancer’s ass. Way to go, girl!!!

      Deep down, no one wants to say the wrong thing, but people react without thinking. They have no idea that the impact can be the same as being publicly slapped.

      I’m so glad your prayers were answered!
      Thank you so much!

      Like

  7. I’m so glad you did this post, Susie. So many people struggle with saying the right thing, or worry about not saying anything. And then of course there are just the blunderers. But even those who try to be sensitive have a lot of trouble to deal with it. In part I think it’s because they empathize so much, but then they don’t know what to do with that empathy. Your post goes a long way towards helping people get their head straight about how to deal with people who have had cancer – and there are a bazillion of them. Everyone knows someone who has had cancer. Few of us know how to deal with it.

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    1. Thanks so much, Anneli!

      I’m sure, I’ve put my foot in my mouth too. We all try to do our best. After going through it, I try to err on the positive.

      Everyone should be given hope. Even the terminally ill. We only have this moment. No one knows when they’re going to die. Everyone should make plans for the future and have hopes and dreams. Miracles happen!

      Liked by 1 person

      1. When someone else gets cancer, the rest of us probably think we’ve dodged a bullet, but the reality is, we’re all going to die – all of us – (but we like to forget that).

        Like

  8. Wonderful post Susie, in that you are cancer free after 5 years. My sister-in-law is due for her 5 yearly pass, here’s hoping. Other people I know have not been so fortunate. That’s life isn’t it, unpredictable, sometimes cruel and yet the possibilities for enjoyment are endless.

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    1. Thanks, Suzanne!

      Here’s the thing. No one knows when they’ll die, so why focus on that. To me, it’s about the quality of life that I choose to live today. That’s really all I have. That and the hope of tomorrow. Why waste precious time worrying? I’m all about enjoyment! 🙂

      Tell your sister-in-law it’s party time!!! “She’ll be fine.”

      Liked by 1 person

  9. Geez, Susie, just when I think you couldn’t be more awesome sauce as a blogger, you surprise me again! Your openness and willingness to write about your struggle is inspirational. It’s very helpful to us readers. I can’t believe some of the comments people made to you. It’s amazing how many folks were born without the tact gene.

    Anyway, just like with your general blogging hints, you are always thinking of helping others.

    In short, you rock!

    Like

    1. Aww! Thanks so much, Al! Some comments really stuck with me. Now, I can put all of it behind me. Whew!

      I hesitated on posting this one since it’s my personal opinion, but am speaking for others. 🙂 So far, so good!

      The first year or two are super scary. The more positive comments we hear from people who believe we can survive it, the better!

      Like

  10. This is such a helpful post, Susie, thank you! To respond to your question above, when my life goes south in some way, I like to tell a few close friends who can be counted on to offer support, but not the world. My mother, on the other hand, was so private not even her best friend knew why she was ill, so felt powerless to support her in whatever it was. But my mother had her own way of coping with things, and I respect that.

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    1. Thanks so much, Gail!

      That’s right. For some, it’s a very personal experience. They don’t want to talk about it or be judged.

      I can relate in this way. Most people are all over the internet after being diagnosed. I never even looked up the survival rate for a stage one patient nor the side effects of my medication until recently. And I’m on the internet every day. Ha!

      Like

  11. Great post Susie and you are so right about everyone being different and handling it in their own way. I think what non-sufferers have to learn is that people are not defined by their illnesses. The illness is just a thing, it is not them. So pleased that you’re fine and getting finer.

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    1. THANK YOU, Jonno and for your comment about not being defined by cancer. I would be willing to bet that twenty years from now, a few people will still ask me, “Are you okay?” in almost a whisper with a super serious look on their faces. I usually respond with, “I’m great, are you okay?” Ha!

      Liked by 1 person

      1. That’s definitely going to happen Susie. I guess they think they’re being caring but it must be irritating. I have a few friends in similar situations and never mention it unless they bring it up. They never ask me if I’m ok after my kidney stone op five years ago, didn’t define me just a thing that happened. Nice hat by the way.

        Like

  12. What a great, well written, on point Post Susie. Amen! Right, no one wants to look at the dark side. We get enough of that when we’re alone. Let’s talk about our dreams, our bucket list, about being healthy, about the future, about our families, trips, travel, new furniture, about how freaking remarkable we are. Still are…

    So you had cancer? Huh? The things some people will go to to lose some weight. 🙂 Be well my friend!

    Like

    1. Hahaha! Absolutely LOVED your comment and am so glad you saw this piece! We’ve been through a lot but people don’t need to dwell on it. It’s not the only interesting thing about us, right? Thanks so much. It’s always great to “see” you!

      Liked by 1 person

      1. Just remember, they talk about it, the good and the insane, because they care about you. Yes, we (you) have been through a lot. I was just invaded in my tush. ..and still have the seeds to prove it I hear. I just had my annual physical and all the numbers were legendary again.. Even the PSAs. So lets tonite raise a glass and celebrate Life with me.

        Like

  13. Reblogged this on OUR LIFE IN 3D and commented:
    I could write a blog post on my thoughts on Susie and her Wild Ride. She is the illustration and the definition of the word LIFE. Yet the gods seemed to strike us both down with Cancer (the c word) about the same time. My readers often applaud my optimistic view on my journey with the c word. Well, I took my cues from Susie. Mine, while serious,amounted to a Pop Quiz while Suzie had closer to a full mid-term exam. We both are alive and well now, some 5 or so years later. And one of us is (still) traveling the globe while the other still wishes too. ~ Live Life folks! This isn’t a dress rehearsal. Make this day and every day awesome!

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    1. Thanks so much! I’m so close… I’ve got to plan some kind of shindig here on the blog. Hmmm.

      I think human nature comes into play when I seem “too” optimistic. They’re like, not so fast buckeroo. Okay, now where did buckeroo come from? Ha!

      Like

  14. This is a really important list, Susie. I cannot imagine having to endure some of the comments you’ve received and it’s hard for me to think I’ve ever been as clueless when speaking to friends of mine under the same circumstances. But I’m glad you also shared that you would have appreciated hearing “You’ll be fine,” and I’m not sure that I’ve been that bold. I will think more about not just excluding negative remarks, but being certain that I exude the right level of confidence that all will be well! I’m so very pleased to hear that you’re right up to your 5-year anniversary. That’s a real celebration!

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    1. Thanks, Debra!

      It’s funny how so many of these blog comments have given me shivers, including yours. I can’t believe it’s almost over. One more week!

      I’ve put my foot in my mouth over the years but I keep learning. I think being positive with others going through tough times is something we can teach ourselves. Then it can become a habit! That little extra confidence given to me by others goes a long way!

      Like

    1. Thank you so much, ML!
      Ha! That will be the jacket cover when it becomes a book. I plan to have a photo taken of me naked from the waist up to show off my Barbie boobs. (No nipples!)

      Like

  15. First off, Woo Hoo! You’re rocking life!! Secondly, people can be so ignorant. I‘ve been there and done that for sure. My Dad lived with cancer for 26 years. Mom dealt with breast cancer, and stayed in remission for the rest of her life. Remind yourself you’re done with it. Repeat as often as needed.

    I’m more of a sharer, I think.

    Like

    1. Hey, Susan! Thank you so much. The party will begin soon…

      Yes, it’s super irritating. I’m so glad to hear your mom never got cancer again and your dad fought hard! Woohoo! See? It’s not always a death sentence.

      I am done with it. I am done with it. Yes! I AM done with it!

      Liked by 1 person

  16. Well done Suzie 💜 An excellent post I am grateful to see you are doing well and I wish you the very best for the future. 💜💜

    Like

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