Talking about cancer and someone’s cancer journey is awkward and makes everyone feel vulnerable. And humans really don’t like vulnerability, do they? Although talking to a cancer patient and/or a cancer survivor might be uncomfortable, with a bit of forethought it doesn’t have to be difficult. Unfortunately, I learned the hard way (as a breast cancer survivor) that there are right and wrong ways of dealing with cancer patients.
Here’s how to know what to say to cancer survivors and cancer patients.
[NOTE: for purposes of this article, I’m defining a “cancer survivor” as someone who has been diagnosed with cancer and is either currently undergoing or has finished treatment (and is not metastatic), similar to the definition used by the National Coalition for Cancer Survivorship and the National Cancer Institute. I’m not including metastatic cancer patients since they often group themselves separately, although I think that much of what I say below would also apply to them as well.]
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What Not to Say to Cancer Survivors
Before understanding what to say to cancer survivors, you must know what NOT to say. Because most people say the wrong thing (or a combination of wrong things). Here’s how to know what to say to cancer survivors by first understanding what NOT to say:
Don’t Be Unrealistically Positive
The most common reaction people have when talking to cancer survivors is to try to be positive. Here’s what that sounds like for those undergoing treatment:
- “You’re strong. I know you’ll beat this.”
- “At least you caught it early!”
- “Most people are cured these days.” (not true, by the way)
And the survivors who have finished treatment continually hear about how great it is they “beat” cancer or “won” their battle. But that’s not really true. The truth is that cancer kills, it can come back, and there’s no way for them to know whether or not they’ll die from it.
The biggest problem with these positive statements is that they devalue how cancer survivors feel and what they’re going through. No matter where someone is in their journey, cancer survivors ALWAYS have a voice in the back of their head reminding them that they might die from their cancer. Cancer brings with it fear and a new level of vulnerability that’s difficult to deal with.
And let’s talk about finding a silver-lining: don’t do it. It’s not your place. Silver-linings should only be found by the cancer survivor, should they want to. Here are a few examples of what I’m talking about (all are real-life examples from yours truly):
- “You look great with all the weight you’ve lost.” [This is a seriously back-handed compliment.]
- “At least you’re not also puking.” [This was in response to me mentioning how bad my insides hurt from chemo].
- “Look at the bright side, at least your boobs will look great!” [You’d be surprised how many people say this].
You might read these and cringe (I sure do). Yet they’re said every day to cancer survivors because people believe they need to say something – anything – positive. You don’t.
[Recommended Reading: Can Cancer Survivors Have PTSD? Here’s What You Need to Know].
Don’t Tell a Story About Someone You Know Who Beat Cancer
During the first few weeks after my breast cancer diagnosis, I often heard stories from people about other cancer survivors. Every story followed the same script, regardless of the type of cancer or the age of the survivor. Here’s how it went:
- Diagnosis was a shock and sounded bad from the beginning.
- They stayed positive and were an inspiration throughout.
- They made it through and are now cancer-free.
These stories were supposed to cheer me up, yet I HATED them. When you tell someone this type of story, you’re telling them everything will be fine (and so you’re also diminishing and devaluing their experience). But it’s even worse than that…
These stories almost always include something about how inspirational and positive their friend or family member was. Whether you intend to or not, you’re implying that the cancer survivor is doing something wrong if things aren’t going well for them. Not only is that hurtful, but it’s plain wrong.
Although I agree that being positive can help from a mental and emotional standpoint, I call BS on the idea that it has a big effect on outcome. While undergoing treatment, I met many cancer patients who were dying from their cancer – either because treatment wasn’t working or because their cancer had come back sometime after initial treatment ended. All of them had a positive attitude.
Besides, there’s something you need to understand about your “inspirational” and “positive” friend or family member. You saw only what they wanted you to see. They had many moments of negativity, fear, and worry that you never saw. Trust me, I know what I’m talking about.
Don’t Make It About You (or Go MIA)
When I was going through treatment, there was a mom at my kids’ school who would shake her head every time she saw me and looked as though she was going to have a nervous breakdown. It was as if I was causing her pain just because I was walking down the same hallway as her with a scarf tied around my head while looking pale and sick. She was making it all about her.
She wasn’t the only one. Here are some of the things I heard from people (with my internal responses n brackets):
- “I can only imagine what it would be like to go through this. My life and my family would be a wreck!” [No, you can’t imagine and how do you think my family/life has been affected?]
- “I know how hard this is for you.” [No, you really don’t.]
- “You poor thing. I don’t know what I’d do if I had to deal with this.” [Stop treating me like I’m already dead and not really here. And why is this all about you?]
- “I cried all night worrying about you.” [Great, now I have to find a way to comfort you amidst my emotional/mental mess.]
There’s nothing wrong with thinking these things (it’s normal and instinctual)… so long as you keep your thoughts away from the cancer survivor. Because when you say these things, you’re placing an additional burden on the cancer survivor that they don’t need.
And PLEASE don’t go missing on people who are battling cancer because you’re not sure what to say/do or because it’s uncomfortable. Several important people in my life went missing – mostly because they made it all about them and had trouble dealing with the vulnerable feelings that came up for them. Here’s the thing: it’s not about you.
The truth is that life is messy and uncomfortable, so find a way to deal with it and don’t disappear (unless you want to alter or lose your friendship forever).
Don’t Give Unsolicited Recommendations
If I had a dollar for every time someone told me I should use the cold cap during chemotherapy to prevent hair loss, I’d have a lot more money. Interestingly, none of the folks who recommended it were cancer survivors (they either knew someone who had used it or had heard about it).
I found it strange how often people would make recommendations about my treatment, which doctors to use, supplements, how to deal with chemotherapy symptoms, and so on. Although you might think this is helpful, it isn’t. Instead, it’s intrusive and disrespectful.
Not only do you not know enough about their situation to give an informed recommendation, but you’re butting into something that’s personal. Some supplements interact negatively with treatment. And people have a right to choose their own doctors. Besides, they have plenty of medical professionals helping them make informed decisions. You don’t know better than the patient, so don’t act like you do.
And don’t try to get around this by asking judgmental questions, such as:
- “Are you sure you can drink alcohol so soon after treatment is over?”
- “Are you still smoking?”
- “Did your doctor tell you about… [insert something you read about regarding treatment options, supplements, etc.]?”
I hate to break it to you, but it’s their life. They get to make their own decisions, so don’t ruin your relationship by asking questions that imply you don’t agree with their decisions or behavior.
Why Not the Cold Cap?
In case you’re wondering about why I chose not to use the cold cap…
It works by reducing the amount of chemotherapy that reaches your hair follicles. Even though the risk is low, it’s possible that this could prevent chemotherapy from reaching loose cancer cells near the scalp. Given how aggressive my breast cancer was and the risk of potential brain metastasis, that wasn’t a risk I was willing to take.
That doesn’t mean that I don’t understand why or judge those who choose to use it (losing your hair is an emotional beating). It just wasn’t right for me. And it was annoying how often people asked about why I didn’t use it.
How to Know What To Say to Cancer Survivors
Now that we’ve covered what NOT to say to cancer survivors, what should you say? Here’s what to say to a cancer survivor (regardless of where they are in their journey):
Acknowledge Them & What They’re Going Through
Instead of trying to be unnaturally positive, acknowledge where they are and what they’re going through. Tell them that you care about them and acknowledge that, although you don’t know how they feel, you get that it’s making life difficult. And offer to help. What they want and need most from you is to feel like you’re there and won’t abandon them. So, do that by saying:
- “This must be hard and I’m sorry that you’ve got to go through this. How can I help you get through it?”
- “I don’t know how you feel but understand that this must be difficult. I want you to know that I’m here to listen anytime you want to talk.”
- “I don’t know what to say other than I’m here for you.”
Remember Who They Are + Follow Their Lead
Don’t forget that the person they were before cancer is still in there. They aren’t their cancer, they’re just dealing with its repercussions. Although the cancer journey is changing them in some ways, they still have hopes and dreams. And they still crave connection, love, and laughter.
Sometimes, they’ll want to talk about their fears around their cancer. And other times they’ll want to act as if nothing has changed and laugh about something silly. Follow their lead and be human with them.
Offer Specific Help
When you offer help, try to be specific. Vague offers such as “let me know if you need anything” are half-hearted and empty (and are usually motivated to ease your guilt as opposed to truly helping).
When asking how you can help, be as specific as you can about what you’d like to help them with. Before offering, consider:
- what they might need help with;
- what you’re comfortable doing; and
- how often you’re willing to offer help.
Don’t forget about family members (and how they’re affected) or the “little” things. You’d be amazed how helpful running errands, dinner delivery, or babysitting is to the survivor and his/her family.
Ask Thoughtful Questions
With respect to people that you’re close to, don’t forget to ask thoughtful questions that are geared toward checking in and seeing if they need anything. Asking questions shows compassion and kindness. And it shows that you’re willing to be there for them.
When asking, don’t assume that they’ll want to talk about it. Instead, ask them whether they’d like to talk or what they need from you and be open to both a yes or no answer. Most importantly, be ready to listen without commentary.
Here are a few examples of potential questions:
- Would you like to talk about how you feel?
- How can I best support you right now?
- I know being positive can be hard. Want to talk about how you’re really doing?
Because of how raw and vulnerable it feels, figuring out what to say to cancer survivors can seem daunting at first. But at the end of the day, its actually rather simple. What’s needed is compassion, kindness, and thoughtfulness. Before saying anything, ask yourself how you can best serve them. Coming from that place will help you to say the right thing.
Until next time…
P.S. Are you a cancer survivor who’s trying to figure out how you’ve changed? You keep trying to go back to your previous life but it’s not working. All you know is that you don’t feel right and need some help to figure this out. I have 2 recommendations for you: (1) read The Impossibility of Going Back and (2) sign up below to be notified when doors open for a new group coaching experience designed to help you figure out your new normal and how to get yourself back on track.