Cancer Etiquette: Talking to Someone With Cancer

[Hopeful]

From the Cancer Treatment Centers of America Newsletter:

Finding the Right Words

It can be difficult to know what to say to someone with cancer. Unless you’ve been there yourself, you can’t possibly understand how it feels.
Many people say inappropriate things, with warm hearts. We often do the best we can but our efforts still fall short. How do we find the right words to talk to someone with cancer?

No Longer a Silent Disease

Years ago, people spoke in whispers about cancer. Today, despite its prevalence, advances in treatment, and increasing survival rates, the disease still carries with it a stigma.

People with cancer continue to face negative attitudes and stereotypes. The truth is, at some point, someone you know will likely get cancer. When it happens, you should be prepared to communicate appropriately about the disease.

Do's and Don'ts of Talking to Someone With Cancer

Many cancer survivors share similar stories of awkward encounters and upsetting comments made by well-meaning individuals. Their collective observations help us define “cancer etiquette,” or rules of conduct for communicating with the cancer community.

Since each person experiences cancer differently, one approach does not necessarily work for everyone. This information serves as a starting point for talking to someone with cancer. There is no single right way. Just keep trying.

12 Tips for Talking to Someone With Cancer

1. Don't ignore them. Some people disappear when someone they know gets cancer. The worst thing you can do is avoid the person because you don’t know how to handle it. Cancer can be lonely and isolating as it is. Tell them “I’m here for you,” or “I love you and we’ll get through this together.” It’s even okay to say “I don’t know what to say” or send a note that says “I’m thinking of you." Just stay connected.

2. Think before you speak. Your words and actions can be powerful. One comment can instantly undo someone’s positive mood. Don’t be overly grave and mournful. Avoid clichés, like “hero” and “battle.” If the person gets worse, does it mean they didn’t fight hard enough? Try to imagine if you were in their shoes. What you would want someone to say to you?

3. Follow their lead. Let the person with cancer set the tone about what they want to talk about. It doesn’t always have to be about cancer. Chances are they want to feel as normal as possible. Tell them about something funny that happened. When they want to talk about cancer, let them. And save the pity eyes and voice.

4. Keep it about them, not you. Don’t lose your focus on the person with cancer. Avoid talking about your headache, backache, etc. This isn’t about you. And as bad as you feel, they feel worse. They aren’t interested in hearing about how hard this has been on your life. Don’t put them in the position of having to comfort you. Only ask questions if you truly want to hear the response.

5. Just listen. Sometimes just being there to listen—really listen— is the best thing you can do. Let the person with cancer talk without interrupting them. You don’t always have to have all the answers, just a sympathetic ear. They may not want to talk at all, and would rather sit quietly. It’s okay to sit in silence.

6. Don’t minimize their experience. Try not to say “Don’t worry, you’ll be fine.” You don’t know that. Instead say “I’m really sorry” or “I hope it will be okay.” And don’t refer to their cancer as “the good cancer.” These statements downplay what they’re going through. Leave the door to communication open so they can talk about their fears and concerns.

7. Don’t be intrusive. Don’t ask the person with cancer questions about their numbers or tumor markers. If they want to talk about their blood results, they will. Give them the freedom to offer this information or not. Also, don’t ask personal questions that you wouldn't have asked before, especially when it comes to subjects like sex and religion.

8. Don’t preach to them. Don’t try to tell the person with cancer what to think, feel or how to act. You don’t know what they’re going through, so don’t act like you do. Instead of saying “I know how you feel,” try saying “I care about you and want to help.” Don't suggest alternative forms of treatment, a healthier lifestyle, etc. And don’t tell them to “stay positive,” it will only cause frustration and guilt.

9. Refrain from physical assessments. Refrain from comments about how the person with cancer looks, particularly if it’s negative. They don’t need their weight loss or hair loss pointed out to them. And if they just started treatment, don’t ask them about potential side effects. If you say anything at all, tell them they look stronger or more beautiful, but mean what you say.

10. Avoid comparisons. Everyone does cancer their own way. Don’t bring up the private medical problems of other people you know. And don’t talk about your friend with cancer who is running marathons or never missed a day of work. Avoid talking about the odds or making assumptions about their prognosis. Just allow them to be themselves.

11. Show them you care. Show the person with cancer that they’re still needed and loved. Give them a hug. Surprise them with a smoothie, books, magazines, or music. Offer to help, such as cooking, laundry, babysitting, or running errands. Be specific by asking “What day can I bring you dinner?” And, offer to help only if you intend to follow through with it and won’t expect something in return.

12. Share encouraging stories. Offer encouragement through success stories of long-term cancer survivors. Avoid saying “They had the same thing as you.” No two cancers are the same. And never ever tell stories with unhappy endings. If you know someone with the same type of cancer, offer to connect them.

Hopeful

[snolan]

Avoid saying "I new someone who died of breast cancer". I had someone say this to me right after I was dx, not something you want to hear.

[caya]

Kilby

I think you have made a very broad, and unfair statement, basically blaming lack of exercise "as the only reason behind it" on women getting cancer.

In the four years before I was diagnosed, I was in the best shape of my life since I was a teenager - I was going to the gym 5 days/week, eating well etc. There are many other women, including on this board, who exercised, followed a good diet, etc. and still got BC.

A very good friend of mine, who is obese, and never exercises, doesn't have BC. Why not?

Please refrain from making such ridiculous statements - it is very upsetting. If lack of exercise were the only reason for getting cancer, (and wouldn't that be nice, if that were really true) then the "cure" would be readily at hand.

all the best
caya

[sarah]

well Killby I don't think you should talk to cancer patients period.
I was thin and exercised and ate properly and got cancer...twice. One of my best friends was a gym rat and thin and except for eating fish, a vegetarian. So you're wrong. Once you have cancer, exercise is a good idea if you aren't already doing it.
I'm with you Caya. I was thin and well exercised so much so the plastic surgeon complained he had a hard time to get fat to fill my breast! sooooo
I love the post otherwise and have sent it to our cancer support group here.
As for you, Kilby why are you on this site?
Sarah

[snolan]

Kilby; I hope your lack of education means you are a spamer. I am a competive moutain bike racer. I do 24 hour/12 hour mountain bike races. I am in the best shape of my life and still got cancer. I ate right, I breast feed my children, I don't drink alcohol but still got cancer. Yes there are studies that put people at risk if they are over weight but it is not the cause. Please educate yourself better before putting statements out on this venue as you will most certainly get angry responses.

[NEDenise]

Love the "Top 12 List"!
I wish I had the nerve to send it anonymously to a few of the thoughtless people I've encountered.

Another one I'd like to add is:
The survivors (BC and other cancers) who can't wait to tell me about how they 'never missed a day of work', and 'drove themselves to all their treatments'...then look at me in a disappointed way because I have, and I can't. I'm happy their journey allowed them to do that...but it doesn't make me a slacker because mine doesn't. I wish they'd think about how their words would affect me, before they spoke.

Thanks for the great post!
Denise

PS-I definitely think Kilby is a spammer! And one for whom English is a second language!

[sarah]

Hello Denise,
Good point. I certainly could not have continued my work which often required 12 hour working days, and sometimes 7 days a week.
Unfortunately many women cannot afford not to work and have to work.
Some friends even drove themselves to chemo! I live about 40 minutes away from my chemo and it requires driving on a freeway (autoroute), there is no way I could have driven that myself. I was asleep at the end of chemo.
It is unfair to judge anyone by how you react to the various treatments. No guilt should be attributed to those who cannot be tough and manage everything perfectly as before.
I admire those with children who continue to manage.
We are all different and react differently. The important thing is for us to get through the treatment and to find meaning and happiness in our lives. How we do it is unimportant, we each do it at our own pace and in our own way.
I think people who point out people who have continued to work, etc. mean well and mean to encourage us that it is not so difficult but they just don't understand the reality. if you haven't gone through chemo, and hard chemo, how can you possibly understand.
Don't listen to them, listen to yourself and your body and just do whatever it takes to help you through this and try to find happiness everyday and appreciate your family and friends who mean well but don't often say what you would prefer they say or do.
health and happiness
love sarah

[3twins]

Thank you for this great post. I, too, wish I could show this to some people without coming across as a witch.
One thing that irks the heck out of me is when talking about a different disease, awareness, research, cure, etc, someone will say "well it's not sexy like breast cancer!"
When in the world did BC become sexy?????
These words, of course, are always spoken by women who have never been diagnosed with bc.


Also, I agree that the post by Kilby must be spam. Ugh!

[Jackie07]

It is kind of funny how once we are diagnosed with cancer/serious illness, all the 'healthy' people feel they are qualified to give us their opinion/advice. Since they don't have cancer, they must know a few things about how to cure/treat/prevent cancer...

The 'sexy' stuff might have stemmed from Cris Karr's popular books (and a film) after her cancer journey (she has a very slow-growing, rare type of cancer): "Crazy, sexy cancer" http://en.wikipedia.org/wiki/Kris_Carr If cancer is viewed as 'sexy', then breast cancer has to be on top of the list...

Many people do not know how to 'properly' react to other people's 'different' situation. They try to say something nice/encouraging, but end up making inappropriate comment. I always remember the embarassing statement I made when I was singing in front of a big group of strangers on a Navy base when I was 17. The words came out of my mouth was the total opposite of what I had intended to say!

[pinkpeonie]

Hi everyone
It has been good to read your posts - what a wonderful group of ladies !!
I have been looking in for a while and couldn't help responding to what you were chatting about!
I was diagnosed with BC in march this year and have since had a mastectomy and axilliary clearance , chemotherapy, radiotherapy and herceptin. i will be seeing the oncologist tomorrow re tabs.
I have 2 daughters - my youngest has just turned 10. I am still very tired - having recently finished radiotherapy so she has been having tuckshop more than usual at school. She came home very upset last week as her teacher had said to her that now that her mums treatments were over that I should be able to be making her lunch to take to school!! My daughter came to my defence and was trying to explain that I was still recovering and still had to go every 3 weeks for another treatment and could she have tuckshop on those days!! her teachers reply was well there are many mothers who work fulltime that still manage to make their children lunch!!! There are no words!!
My poor daughter has really struggled with my diagnosis - this is certainly not helped by comments such as that!!
I have been amazed at the things that have been said over these many months !

Thanks for sharing your stories !!
x

[sarah]

Hello Peonie,
this is terrible.
Can you ask one of your doctors or hospital to ask for tuckshop?
At least have a friend call the school and tell the principal about this disgraceful behavior.
Don't feel guilty, you are not guilty, they are.
Tell your daughter from all of us that they are idiots and have no idea how different people react to treatment and that they lack compassion and therfore are not a good role models.
Shame on them. Are you sure your daughter is in the right school?
Take care,
health and happiness
hugs and love
sarah

[pinkpeonie]

Hi sarah

Thank you for your kind words.
Tuckshop is something that we pay for privately here so in theory you could have it every day if you wanted to!
Really not sure why the teacher said what she did.
My poor daughter was upset that her teacher was showing me so little compassion .
And yes I have to say I have been questioning whether she is in the right school - I definitely know that she is not with the right teacher!!
Just a pity that i have to even think about that now too.

Thank you again for your reply - I love the photo of your dog - looks like a real cutie.
Have a great day.
x

[sarah]

Hello Peonie,
Yes it is too much to have to deal with at this point. Weird that she would make a comment when you pay for it anyway and it should be your choice whether you are sick or not.
Yes, Tania is an adorable dog. Found her at a refuge when she was 4 years old (now 7) and had been abandonned by her previous owners who didn't want her back. My husband and I are still wondering what bothered them! She is loved by everyone.
Get well, be well and enjoy your sweet children. Your daughter sounds very special and compassionate, rare in someone so young.
hugs and love sarah

[Jackie07]

Hi pinkpeonie,

Radiation treatment can make us very 'tired'. I remember the time when I was done with all my treatment in 2004 - besides the redness and pain (had to apply some kine of lotion the hospital gave me twice a day), I was very fatigued - more than when I had just finished my chemo!

Regular exercise - such as daily walk - does help. But it takes time for the body to heal - from surgery, from chemo, and from radiation.

[Jean]

Pinkpeonie,
Shame on that teacher...I think you should meet with her in person and
1. give her the list of tips.
2. Nothing worse than an educated ass.
3. Do meet with her and let her know she really upset your daughter who has enough on her young innocent plate without the teacher adding unnecessary nonsense.
4. Have a discussion with the principle and inform him of this as his employee (that teacher) needs help in how to treat the students who are in her charge.

It always concerns me when teachers like this have contact with our children and their young minds.

It is so natural to feel extreme fatigue from the radiation treatments.
In fact it takes some time to regain your energy level and of course everyone is different. Be patient with yourself....it does take some time but it will come back.

Best Wishes,
Jean

[norkdo]

pinkpeonie:
shocking behaviour in your daughter's teacher.
write the school board or the principal a letter.
It is THE most effective way to change that teacher.

[norkdo]

Note to never say to someone with breast cancer (as my nurse and also my own sister did): "oh things are so progressive now breast cancer...given new developments in chemo that breast cancer is basically like Aids now, a chronic condition." Please don't say this. You sound so stupid I am embarrassed for you. And you would never dare say it in front of the family who has lost someone to this disease as someone getting all the treatment possible dies from this everyday. loses the battle. so don't say it. check yourself and your arrogance. Breast cancer mortality is the same per capita now as it was 65 years ago.
">

[sarah]

Hello Norko,
you mention"Breast cancer mortality is the same per capita now as it was 65 years ago."
Wow, this surprised me.
all the best,
Sarah

[Hopeful]

Pinkpeonie,

I am sorry that your daughter is being what I would construe as bullied by her teacher as a result of your illness. I am glad that this post prompted you to share your experience with us, and, hopefully, get some support for you and your daughter. I agree with Jean and norkdo, I would contact the school administration and request "sensitivity training" for this teacher.

Hopeful

[NEDenise]

PinkPeonie, (cool name BTW)
I admit it...I didn't even know what tuckshop was until I read this. I actually googled it and having read some of the tuckshop menus online...YUM! Why in the world would that teacher want your daughter NOT to have a delicious lunch each day? Whether you're sick or not!!

It sounds to me like Tuckshop where you live, is sort of like the school lunches we have where I live...and my two boys buy their lunch every single day...and have for years...long before I got sick! Am I missing something? Tuckshop sounds like a good option to me.

I'm also a teacher...and the vast majority of my student buy lunch nearly every day. Who wouldn't? The food is ready to go...more variety than most parents pack...and there's always a hot option to choose. Heck! I buy it myself some days, it looks so good! (Can't afford to buy it every day...prices for staff are MUCH higher than for students! )

I'm sure you've reassured your daughter many times by now, but please tell her from us, here at the HER2 forum, that moms and teachers all over America (and the world!) think you are a brave, strong, and devoted Mom! That you make sure she has a good lunch every day, and that sometimes fairly smart people, say really STUPID things.

All the best to you and your beautiful family!
Denise