Breast cancer: Etiquette
October 15th, 2010
08:48 AM ET

Breast cancer: Etiquette

This week Amanda Enayati will share the milestones of a life-altering journey that began the day she learned she had late-stage breast cancer more than three years ago.

Today let’s discuss cancer etiquette. I would call it serious illness etiquette but I thought I would specialize since cancer is what I know and, who knows, maybe the rules are different from disease to disease. (And yes, every one of the following has happened to me at some point.)

Finding out someone has cancer is awful. It is a cruel disease, which will strike one out of every two Americans. Hearing the bad news is shocking and devastating but it’s probably more shocking and devastating for the cancer victim than it is for you.

So pull yourself together.

You can be authentic, show a little emotion, maybe even shed a tear but for the love of God don’t make it about you and certainly don’t put the cancer patient in the position of having to console you as you sob, beat your chest and yell “Why? Why, God?’ up at the heavens.

Rein yourself in for a minute or two, and let the sick person set the tone. Maybe she wants you to hold her hand and cry with her. Maybe she just wants you to sit and listen. Or maybe she wants you to list the 101 reasons she will survive. Her call. Not yours.

If you don’t know what to say, don’t worry. Any variation of “I’m really sorry,” “I love you,” “My prayers/thoughts are with you” is perfectly okay.

If you find out someone has cancer from someone else, do not call her, burst into tears and sob: “Why do all the good ones have to die?” Yes, it’s true that all the good ones have to die. But all the bad ones have to die too. We all die sometime. Besides, it’s probably not okay to pronounce a living person, who is sitting there on the other end of the phone line, dead from something that they are more than likely hoping to beat (even if they don’t admit it).

Which leads me to my next point, and that is that the cancer patient may or may not die from that particular cancer. There are lots of folks who survive cancer—both early and late-stage—and never have a recurrence, even when the doctors anticipated a high probability that they would. I have read accounts of people who were given weeks and days to live—people who are still living decades later. Recovery is a function of many things and one of them is grace, something that none of us can ever begin to predict or quantify.

Next rule: Don’t look up the odds. Don’t point out the odds. Don’t confirm the cancer patient’s worst nightmares.

What’s that? You’re just being “realistic?” Well, shove the realism up your unmentionable bits and keep it there.

Don’t give anyone struggling with cancer a moniker that contains the word ‘cancer’ in it. Someone I love kept calling me Cancer Girl, like I was a superhero or something. Even in the throes of dealing with it, I didn’t want to hear the word cancer, much less have it associated with me as a nickname, and so I wanted to punch him in the nethers each and every single time he uttered the words. (But I didn’t. I didn’t say a word. I am now, though. Don’t do it.)

Say you’re an acquaintance of someone who’s dealing with cancer, make sure that every time you run into her, your face doesn’t crumple into a look of sorrow, your eyebrows knit together over a pair of puppy-dog eyes as you whine: “How are youuuuu?” in a soap opera voice. She probably was fine until the moment she laid eyes on you and now you’ve ruined the rest of her day with your faux pity.

On the other hand, when the patient is going through treatment, don’t ever tell her she looks bald, skinny, bloated, ashy, gray, red, sickly, even if it’s true. Lie if you need to. Tell her that she’s glowing, beautiful, vibrant, alive. (All of these rules apply to both men and women, by the way.)

One day when I was in the middle of chemo, my daughter’s nursery school teacher said to me: “Aren’t you supposed to be looking worse during chemo? How do you get more beautiful every day?” I swear I wanted to leave my husband right then and there, and marry this woman. I will adore her for life, not because of some compliment that more than likely wasn’t true, but because of her generosity of spirit and the gift of hope that she gave me through a few simple words uttered with pure intentions.

Listen. This is particularly important. When the person is in remission, say, one or two years out from treatment, hell, even six months out from treatment, don’t keep bringing up cancer every time you see them. Say you happen to run into the person in a social situation where everyone’s talking about the weather or politics or those crazy celebrities and their nutty antics, please please please don’t say anything like:

Your skin looks SO great, not like all the other times I’ve seen you when you looked so sick and kind of yellow, you know? Maybe even almost green. Like you weren’t doing so well. But now your skin looks like a healthy person’s skin. Even your hair. Hey, how often do you go to the oncologist? When is your next appointment? How are you feeeeeling?”

Because I promise you the person, no matter how polite she’s being, isn’t taking it well. If she wanted to bring it up, she would have. Because, with a few exceptions we can discuss at some point, she has either already moved on or is trying to move on. She’s hoping to forget the horrors she endured. She doesn’t want to relive it. She certainly doesn’t want to be reminded of it in a social situation. And so more than likely, she wants to take your smug little face and do violent things to it. Even if her face is a perfectly arranged mask of social civility.

Any questions?

Amanda Enayati’s work has appeared in Salon, the Washington Post, Detroit News, and "Let Me Tell You Where I’ve Been: New Writing by Women of the Iranian Diaspora" (University of Arkansas Press). You can follow her on Twitter @AmandaEnayati or her daily blog, practicalmagicforbeginners.com.

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  1. Jennifer

    Thanks for that. One of my close friends was diagnosed with breast cancer and after reading this I am happy to say that I am doing everything right! I didn't want her to think that I was ignoring what she was going through, although we do talk about it at length sometimes, but we also talk about everyday stuff, like nothing serious is going on in her life.
    Congrats on being a well bred "survivor"!

    October 15, 2010 at 09:17 | Report abuse | Reply
    • gale

      this is a wonderful article! as in all of life's events, one would hope that comon sense rules....however...not always so true. I'll never get over the "freind" who sent me a lengthy web article on all the things I might have done that caused my breast cancer. not so helpful

      October 17, 2010 at 09:27 | Report abuse |
  2. Lynn

    Thank you – a very close friend was recently diagnosed with cancer and while I am so far not guilty of any of the offenses you mention, I have been wondering if I was doing the right thing or handling things in the best way. She will begin chemo soon and your words will help me to know what to say and more importantly what "NOT" to say. Thank you

    October 15, 2010 at 09:28 | Report abuse | Reply
  3. Brelle Rohwer

    One of the hardest things about being diagnosed with cancer (beyond the obvious fear of death, miserable treatment and leaving two very small boys without a mother) was telling my friends and family. I worried so much about how worried and uncomfortable it would make them feel.

    Amanda's advise is right on. I felt terrible when someone burst into tears. I was the comforting them. On the other hand, when someone simly said, "Damn, that sucks. How are you doing?" I felt relieved. They get it. It does suck. It is miserable. And it opened the door for me to express how I was really feeling at that moment instead of providing a shoulder to cry on. I needed that shoulder for my 3 year old.

    So Amanda, thank you for providing this wonderful etiquette lesson.
    Your Sister in C

    October 15, 2010 at 09:31 | Report abuse | Reply
    • leogirl

      Not only three year olds, but kids of all ages, need their mothers shoulder when they find out their mother has cancer. My mom recently ended her chemo and radiation and maybe it wasn't the shoulder i cried on but we just sat together a lot and held each other. I am married and 36 yrs old.

      October 15, 2010 at 16:34 | Report abuse |
    • Kaye

      When my best friend came down with breats cancer at the age of 45 she was lost! Her first round of chemo knocked her out of her socks and her hair which feel out in clumps! She cried one night that she was going to have to shave it all off and just wear a hat forever! The next day I went and shaved my head (I had long, long hair) and emailed her the picture. She looked great bald and I looked like a boy but it was soooooo worth it just to hear her crack up laughing!

      October 15, 2010 at 17:53 | Report abuse |
    • LEB

      "Damn, that sucks, how are you feeling?" has been my response to a friend who was recently diagnosed with a brain tumor. I WANT to talk to her about it, to find out just how sick she is, because I'm terribly, terribly curious and it's hard not to be. But I restrain myself. I saw her tonight, in fact, and said something along the lines of, "It's okay, I understand. Well, I mean I really DON'T understand, but I can sympathize." She replied that she knows what I meant and that she appreciated it. I think it was the right thing do say. =)

      I also know that the last thing my friend wants to be treated as is delicate. She has a lot of health problems which have made her disabled (she walks with a crutch and can't climb stairs), but there are still a lot of things she CAN do. You can be helpful to someone who is ill without treating them like they're fragile, which is what I really try to do for my friend. It's what I would want people to do for me.

      October 17, 2010 at 01:57 | Report abuse |
  4. Bev

    If the etiquette is for others to not bring up the topic, then we survivors need to speak out a lot more. My diagnosis wouldn't have felt so traumatic if I had been more aware not only of how many people have been affected (in my case,by cervical cancer), but that you can even say "I HAD cancer." I also have to deal with the anger that if there had been more conversation about HPV and dysplasia I could have skipped the whole ordeal.

    October 15, 2010 at 09:43 | Report abuse | Reply
    • Ruth

      The etiquette is to make the "victim" feel like a normal person rather than someone defined only by cancer and for us as survivors, I believe, to "welcome" them and project an genuine upbeat and positive attitude which gives them hope, not worry, i.e., rather than to say, "I heard you have cancer. I'm soooooo sorry!" you might say something like, "I heard what's going on with you. You know, the medical profession is learning more and more all the time about how to deal with this stuff. I know it was much better for me than it had been 25 years earlier, and that was years ago!"

      October 15, 2010 at 14:51 | Report abuse |
  5. Cheri

    Thank you for your articles regarding your journey. I am 16 months out from my breast cancer diagnosis and a year from my last chemo treatment. All the things you wrote are exactly true! I even to this day get the "how are you feeling" question. AND more people than I can count mention how good my hair looks. I feel some days that I am superficially reduced to the hair issue. This has been the biggest bone of contention for me. It is great to be back into regular activities again and all the stuff that goes with it, namely normal conversations related to said activities!!

    October 15, 2010 at 09:49 | Report abuse | Reply
    • Bluebird71

      Me too! I was sooo sick of all the hair comments! I knew people just wanted to connect with me, to let me know they cared and prayed for me. So I reminded myself, its not about the hair, they just truly care and this is how they are awkwardly doing it.

      October 15, 2010 at 13:08 | Report abuse |
    • Kirstyloo

      And sometimes it is really about the hair! It is hard to say the generic questions/comments/compliments when they can be taken the wrong way. I've always started my phone calls with my mom with "how's it going?" Now, these same words could take on a new meaning. She has actually expressed frustration with everyone asking how she was right after our typical introduction to our phone call. I've had to get more specific with my introduction so it doesn't seem like I'm just checking up on her health and emotional state.

      October 15, 2010 at 16:34 | Report abuse |
    • LEB

      I'm glad the author and commenters such as yourself have pointed out the hair issue, because if I had a friend who had chemo I'd want to compliment how healthy her hair looked when it grew back. I would mean it kindly, to encourage her to have confidence in how healthy and beautiful she looked, especially being the surviver of such a devastating illness. I think that losing one's hair is just a lot more painful for women than for men. But if cancer survivors don't appreciate such comments, then I will make an effort to extend my positive feelings in less superficial ways. =)

      October 17, 2010 at 02:02 | Report abuse |
  6. Tray

    PERFECT!!!!!!!!!!!!!!!! I'm going to send this to everyone I know!! I had BC 2 yrs. ago and I CAN'T STAND IT when people constantly refer to it now. My boss is constantly introducing me to people as a bc survivor, as if my health is the business of strangers. People have given me BC gifts, like oh I got this free BC tote bag when I bought something and I wanted you to have it! Gee thanks, you want me to carry around a constant reminder and announce it to the world?? And I have an aunt who always greets me with that awful 'how are you feeeeeeeeeeling?' crap. Then she'll assure me 'you look good, really.' Well why wouldn't I? It drives me insane. Thank you so much for writing this.

    October 15, 2010 at 09:53 | Report abuse | Reply
    • morgan painter

      Don't take it any more. Just politely tell them you appreciate their kindness but wish to move on to having a normal life like all other people. If they do it again, give them that stern look you give any one with bad manners and tell them. "I asked you not to mention that again. Did you mean to offend me?"

      October 15, 2010 at 14:47 | Report abuse |
    • Kaye

      The only cancer related thing I gave to my best friend, other than a picture of my shaved head which I did when she was upset losing hers (she looked great bald and I looked like a boy!), was a very pretty needle point sampler that had the prettiest script on it. When you got close enough to read the flowery writing it said "F#@$ Cancer!". She has it hanging in her office...funny how many people miss the saying on the very Victorian looking piece...

      October 15, 2010 at 17:58 | Report abuse |
  7. Dawn

    As a follow cancer survivor, I appreciate this article. It is incredibly insightful to think about letting the one stricken with cancer set the tone of a conversation. People deal with serious illnesses like cancer in different ways. In fact, I know that I don't always feel the same way about my own cancer journey from day to day. I think it is also important to remember that if you are a cancer survivor, what you experienced during your own journey may not be the same as someone else. I actually found that some of the “worst offenders” of cancer etiquette were those who had cancer themselves. They were always going on and on about how sick they got, etc. However, personally, I did not want to know that much detail. I have strived to make my own journey as spiritual as possible and left the medicine and side effects to my medical team. But again, everyone’s experience is different and that is important to keep in mind. Also, you can’t forget your friends and family. Whether we like it or not, they are also affected by our disease. It is challenging to support them through your struggle, but on occasion you will have to support them too. Support is a two-way street and you might even find some strength in it.

    October 15, 2010 at 09:54 | Report abuse | Reply
    • Susannah

      Right on Dawn.As a cancer survivor, I agree that they (not me)are some of the worst offenders. I kept my illness from my co-workers all thru chemo, wigs etc. There is a lady who sits @ our pool who is getting on my nerves big time. She never lets us forget why she's sitting in the shade, slathers copious amounts of lotion on her to go into the water to the extent that I am loath to let my grandchildren in the water with her. Finally one day I told her that my sister died as did some very close friends of cancer & she's still around to talk about it daily 22 years later. It hasn't stopped her. Maybe she needs the pity, but she's getting everything but...

      October 15, 2010 at 13:28 | Report abuse |
  8. Jen

    Well said Brelle! Having to tell everyone about my cancer diagnosis was also difficult and the fact of being in my thirties and having two younger children made it that much more difficult for people to hear! I wish everyone who I had to tell the c news to could have read this beforehand. It would have saved me many wet shoulders!
    Thank you Amanda for an absolutly appropriate cancer etiquette article!

    October 15, 2010 at 09:57 | Report abuse | Reply
    • Brelle Rohwer

      Thanks Jen! I hope that you are doing well.

      October 15, 2010 at 10:13 | Report abuse |
  9. Judith

    These sentiments are so true and they apply to pregnancies also. When pregnant, we face the least enviable comments (surprisingly most from women who themselves have ben pregnant) and those brutal remarks bruise the spirit. Dont mention our weight gain, or the size of our thighs, or swollen ankles, or the girth of our stomach, even if you call it a baby bump. While we are aware that these physical impairments occur, we dont want to be reminded by every other person that they are happening, especially after we've mustered the courage to leave our homes.
    So humans, remember one of the cardinal rules of society, if you have nothing positive to say, just smile, and keep going!

    October 15, 2010 at 10:08 | Report abuse | Reply
  10. Susan Slattery

    This is great advice. I've enjoyed reading this whole series.

    October 15, 2010 at 10:08 | Report abuse | Reply
  11. Jessie Yeo

    A very good article for everyone out there. At least I know I am doing and saying the right thing to a friend who has BC. Thank you

    October 15, 2010 at 10:09 | Report abuse | Reply
  12. DEB

    I too am a survivor two years out and counting. I am so glad that this etiquette has been posted. I work at a small company and telling my co-workers (which I consider family) as hard as telling my own family. Everyone of us got through this treatment in different ways. We are all trying the best way to cope that we can in a short time. Its something we are all aware of but really didnt' discuss. I chose to keep my "people" as informed as possible. I answered questions that sometimes were humorous and sometimes difficult. I hoped that by being upfront with my friends and family that they may be able to cope as well as being able to support me and also that they become more aware of what options are now available.

    October 15, 2010 at 10:19 | Report abuse | Reply
  13. Just Me

    This is a wonderful guide. I know many people do not know how to handle situations like this. I am a 3 year breast cancer survivor and a 2 year suicide survivor. I can tell you that people do say things meaning to be supportive that really can do more harm than good. The best thing to do in either of these situations is to not ignore what has happened, tell them you are sorry to hear the news, but then let the person that is going through it talk–be a good listener.

    I got really tired of hearing about everyone else's relatives that had cancer. I didn't need people sending me articles all the time or buying me pink things–pink didn't suddenly become my favorite color–it made me hate the color at the time (but I have gotten over it now).

    October 15, 2010 at 10:20 | Report abuse | Reply
  14. Kristi

    Good advice but you have some violent tendencies you need to get therapy for dear.

    October 15, 2010 at 10:24 | Report abuse | Reply
    • allanhowls

      Oh please, Kristi. Giving a nice, hard "reality check" to some poor sap who desperately needs to be realigned with the real world is hardly a violent tendency. A good whack upside the head is more corrective than violent. Time to put on your Big Girl Panties and deal with matters how they need to be dealt with.

      October 15, 2010 at 13:13 | Report abuse |
    • b.g.

      And you have some patronizing tendencies you need to get therapy for, HON.

      October 16, 2010 at 21:37 | Report abuse |
  15. Deloris Stephenson

    Excellent article! And it does apply to all types of cancer. I (knock wood) have not had cancer, but have lost a parent and several friends to various cancers. Their preference in dealing with their illnesses varied. So let the other person set the tone. I absolutely LOVE the photo of you and your children. It is the perfect mother/children photo.

    October 15, 2010 at 10:25 | Report abuse | Reply
  16. Susan

    Another rule: when someone shares with you their BC diagnosis, dont imediately share with then that your aunt had breast cancer and was dead in a year, and she was so YOUNG!

    October 15, 2010 at 10:30 | Report abuse | Reply
    • Just Me

      There you go! That is what I was trying to say in my post (and I hope I"m not the one being told I have violent tendencies)

      October 15, 2010 at 10:34 | Report abuse |
    • Lily

      Exactly!! I received the news 2 weeks ago that I have breast cancer. Today I told my co-workers. Most of them were really cool – one not so much. He went on to tell me how terrible his mom is doing (with breast cancer), and that everyone has to die, but that I'm much too young... Gawd, I could have shot him on the spot.

      I have NO intention of dying of this.

      November 11, 2010 at 02:16 | Report abuse |
  17. Sarcoma survivor

    Thank you for this article. It is spot on. I was told the day I received my diagnosis to consider who the recipient of the news was before telling. That was good advice, there were some people I did not want to deal with, and others whom I only wanted to share a minimum of information with. Many people simply aren't thoughtful and some are plain nosey. By the way for those of you who don't have cancer, a survivor is someone who is in treatment, or out of it, we are SURVIVING it every day we LIVE. Please respect that and leave it to us to tell people what we choose.

    October 15, 2010 at 10:44 | Report abuse | Reply
  18. Tamara

    And now I want to marry YOU. I hope people, no matter their intentions, will heed your advice and proceed with caution – or at least common sense. My coworkers still bring up my struggles with infertility and loss despite the fact that my miraculous twins are almost 6 months old. Yes, I am blessed. But the pain I endured is still beneath the surface and why dig around for it now? Thank you, thank you, thank you! (And you do look amazing, by the way).

    October 15, 2010 at 10:45 | Report abuse | Reply
  19. Angie64

    Another Rule: it is okay to laugh!! My last chemo was 9/15/10 and it seems everyone around me was afraid to laugh. There are some funny things that happen like shopping for a boob, forgetting you dont need to buy that shampoo for a while ( I have 12 bottles now) , I did look like a cabbage patch kid with no hair and the steroid induced moon face! Bottom line is after the shock has worn off the person with ca and the people they have told life can't be all cancer all the time.... you have to live and you have to laugh and most of all you have to know you can plan for the future no matter how long or short that future may be 🙂

    October 15, 2010 at 10:46 | Report abuse | Reply
    • heidi

      Congratulations on your first month! Best wishes for your first year, decade, lifetime...

      October 15, 2010 at 22:00 | Report abuse |
    • mtngrrll

      Joking about my fake boob and tattoo with my friends was one of the highlights of having breast cancer! If you can't laugh about stuff like that, then you might as well just pull the covers up over your head and die.

      October 16, 2010 at 02:14 | Report abuse |
    • alysnwonder

      i have been in remission for two years now. i tell anyone who wants to hear about what treatment is like, and how terrific my doctors are. i laugh all the time, it feels good and while i'm concerned with the cancer coming back, i think it takes pressure off you loved ones and friends.

      Your tattooed fake breast brought up an image i'd like to share. I have seen someone who had a beautiful tattoo of flowers on her chest to cover the mastectomy scar. I bet she felt beautiful.

      October 17, 2010 at 09:30 | Report abuse |
  20. star

    it is hard to know whether someone wants to talk about it or not, whether they think they are protecting you by not mentioning it. I have known people who were offended when I ran in to them that I did not ask about it, and others who were annoyed that I did. And when I told a friend she looked lovely (during her chemo week) she got mad and took it to mean I did not believe her how awful it was.

    October 15, 2010 at 11:02 | Report abuse | Reply
    • Ruth

      Well, you have to realize that a few people just want to have a pity party. Just do your best. Invite them to lunch if you can and let them set the tone. They just want to feel genuinely cared about.

      October 15, 2010 at 15:01 | Report abuse |
  21. Jill

    I agree with 99% of your suggestions. However, I will also say that it's important to remember that not every survivor feels the same way. I am a 2 year survivor of BC, as well, and feel very appreciative when people still ask me how I'm doing. Treatment is not over – I'm taking tamoxifen. Trying to live a healthy life and make changes to keep a recurrence at bay is not over. Dealing with chemo-induced menopause at 36 years old is not over. I'm very cheery, strong and optimistic, but I also want people to realize that cancer is life-changing, even after the most visible parts of treatment are over. I appreciate the continued support of my friends and having the chance to talk about how it is still affecting me. Stay strong, fellow survivors!!

    October 15, 2010 at 11:19 | Report abuse | Reply
    • Ruth

      I don't think I ever minded when my close friends asked how I was getting along. It was the less close friends and acquaintances who had never really spoken to me about anything else before and suddernly were "so concerned" that bothered me.

      October 15, 2010 at 15:04 | Report abuse |
    • mtngrrll

      Jill, I am in your exact same situation. A 2-yr survivor of a one-sided total mastectomy, and on Tamoxifen. I do consider myself still in the middle of treatment, since at 48 I still have not gone into menopause. In fact I am worse on the Tamoxifen than I was with the BC. I have gone from my normal weight of 125# (at 5'9") to 101# because I am nauseous 24/7 and cannot eat. Just the smell of food will incur vicious migraines. My close friends are more worried now than they were when I was diagnosed with BC. I kept my sense of humor and love of life all through the 7 surgeries necessary for the BC, because what else can you do? But finally stopped taking the Tamoxifen 3 yrs. early because it was killing me. Now I feel and look better. My husband and boys (10 & 15) and friends all make sure that I eat something everyday and keep it low key. That is encouraging to me and they keep me in their prayers and give me lots of hugs. They can also tell when I have put on even the smallest amount of weight and are so encouraging and loving that I try to eat just a little bit more. This is such a fantastic article. If I had seen it 2 yrs ago, I would have printed it off and handed it out to everyone I knew. Good luck with your challenge but please be careful regarding the Tamoxifen. IT'S ALL IN THE ATTITUDE!! 😀

      October 16, 2010 at 02:11 | Report abuse |
    • T

      A true and honest post. We are on the same page.

      October 16, 2010 at 08:59 | Report abuse |
  22. OurThanksgiving

    Hello! My name is Darin Del Campo and I just wanted to share this with you all. Although not in a personal fight with cancer myself, I know WAY too many people affected by it. Co-workers, friends, family, etc. It is aweful how common it is becoming. I wish more people knew about the numbers and would support something so out of control. My two friends and I have decided to skateboard during our Thanksgiving from Miami's South Beach to Orlando with nothing but extra clothes and our longboards. We want to prove to people, those who are watching or supporting that is, that with little to nothing you can make a difference out there. Fighting for others is just as important as fighting for yourself! Rock on ladies and gents:) maybe I will see some of you on Facebook!

    October 15, 2010 at 11:27 | Report abuse | Reply
  23. Julie in Austin

    I lost my mother to cancer and I want to say that the people around me who didn't follow these rules were some of the biggest drains on Mom's spirit. She was diagnosed with Stage 4 ovarian cancer and after being diagnosed with breast, brain, and a few other cancers in places those little cells managed to locate, I just wanted to spend quality time with my own mother. But instead, much of the time we had - we didn't live in the same state at the time - was taken up by people who never allowed her to live her life, and instead focused on cancer, cancer and yes, more cancer.

    Thank you so much for writing this article. I hope that people read it and learn from it.

    October 15, 2010 at 11:54 | Report abuse | Reply
  24. paul

    Why restrict these great suggestions to "breast" cancer ettiquitte? How about directing them to all cancer suvivors? Having just recovered from 6 hours of renal cancer surgery, I'd like to feel included as well...

    October 15, 2010 at 11:54 | Report abuse | Reply
    • Ruth

      You have certainly earned the right to be included. I think the article was titled Breast Cancer Etiquette because this happens to be Breast Cancer Awareness month, but there was no mention of breast cancer in the body of the article. The "rules" apply to anyone who's ever had cancer.

      October 15, 2010 at 15:13 | Report abuse |
  25. ApeHanger

    I don't have cancer but I do have chronic refractory idiopathic thrombocytopenic purpura (ITP), for which treatment often involves drugs used to treat cancer. So I'm well aware of what a cancer patient may be experiencing. That said, I have no problem with some of the nicknames I have acquired as a result of being a chronic ITP patient. My family and friends refer to it as "Pac-Man disease," an allusion to Pac-Man running around in my veins and eating my platelets. My favorite is "Mr. Leaky," an appellation given by one the ER doctors (a very attractive female) who has treated me a number of times when things have gone severely haywire and major bleeding has started.

    I think women tend to get overwrought about something that most men would stoically accept as one of the risks of being alive. Yes, learning that you have developed cancer is very stressful, yes, treatment can be rough, and yes, death is a distinct possibility. However, getting overly sensitive about others' concern is not the way to deal with the disease.

    October 15, 2010 at 12:23 | Report abuse | Reply
    • Ruth

      More power to anyone who can remain unaffected by all the comments regarding his or her disease. But I have to go with Amanda's take and what seems to be the general concensus as well.

      October 15, 2010 at 15:20 | Report abuse |
    • b.g.

      There are quite a few stoic women and quite a few melodramatic men out there....

      October 16, 2010 at 21:38 | Report abuse |
  26. dj in Germantown

    ... and another thing.

    I am 3 1/2 years post breast cancer treatment. I did the surgery, the chemo, and 33 days of radiation. I, as they say, fought like a girl.

    I so appreciate this author sharing her insight 'cause it is WAY annoying to have someone you haven't seen in a while say "oh, gee, I heard about your cancer. You know my xxx (fill in blank with relative or friend of spouse) had breast cancer and they thought they got it all but ..." Argh!

    Trust me, anyone you know who has any type of cancer ONLY wants to hear the success stories. In another life you can regale me with all the horror stories and unhappy endings. In this one; I only want positive outcomes. If you don't know one of those stories, keep the rest to yourself and tell me instead about your kids, dog, vacation, whatever.

    October 15, 2010 at 12:31 | Report abuse | Reply
    • Kristi B.

      I can't tell you how much I agree with this comment. ONLY success stories, please!

      October 15, 2010 at 12:45 | Report abuse |
  27. KRP

    Great article – and very relevant to other types of cancers as well. My situation was totally different – I'm a male and had lymphoma – 8 years ago – and I still get these questions/comments/looks. Cancer is definitely part of who I am – but it doesn't define me. It's time to move on folks – I have!

    October 15, 2010 at 12:40 | Report abuse | Reply
  28. Nancy B

    Thank you. I would caution cancer survuvors to follow the same rules. I had a perfect stranger come to my door to see if I wanted to talk. She was a friend of a friend who had gone through treatment recently. I had just been diagnosed. I stood there and listened to everythig she went through and all that she was still worried about. Then I went to my room and cried.

    October 15, 2010 at 12:40 | Report abuse | Reply
  29. Susan

    I can relate to your article. Thank you for educating people on the proper way to deal with cancer. I am a 2 year survivor of inflammatory breast cancer. This type of cancer required very aggressive treatment. Not all breast cancer is created equal. I found it difficult listening to comparisions between others and myself....such as my friend had bc and she is running marathons. Also have a hard time with people who think if you just stay positive...all will be well. Not always the case. The most important thing I found was not to be ignored. I had so-called friends who could not deal with it so they said nothing to me..which really hurt.

    October 15, 2010 at 12:43 | Report abuse | Reply
  30. Lisa

    All true - I especially hate the "how aaaaaare you?" and the people that *I* had to comfort - so exhausting.

    Can I add a couple more? Please don't minimize the person's cancer or their treatment. A very close friend actually had the nerve to tell me "Oh, yeah, I know someone who went through chemo and said it was no big deal." Really? No big deal. Great. I guess I'm just a baby for having low blood counts, shingles, exhaustion, mouth sores, etc.

    My last one goes along with the compliment - this is never so important as when you first see that person in their wig/hat/scarf. I felt so terribly self-conscious and stupid. I didn't think I'd get through the day. But a co-worker saw me arrive, squeezed my shoulder and said, "you look great." Those three words meant more to me than anything.

    For those who want to know what they should do - let the person know you're thinking of them. A card (not some sad "get well soon" but something funny or lighthearted or "just because" works great) or a call. Offer to sit with them through their treatment.

    October 15, 2010 at 13:03 | Report abuse | Reply
  31. Just Me

    I have to agree with Kristi. You seem to harbor quite a bit of anger towards people who really don't know what to make of the situation, when they are just trying to be kind. Friends and relatives can be blindsided by your diagnosis (as you were) and may simply not know how to handle it. Each gravely ill patient is an individual, with individual needs, Your "Rules of Etiquette" do not apply to everyone. Obviously, you don't want to ask the person, "Are you going to die? Who's getting your diamond earrings?" The interactions of patients and people in their lives are highly individualized, and few "rules" should apply. I know. I am an ovarian and endometrial cancer survivor. Both of my parents died of cancer. Please try to be a bit more understanding not only for the sake of other folks, but for yourself, as well. You'll feel better.

    October 15, 2010 at 13:06 | Report abuse | Reply
    • Ruth

      As you say, [people] are highly individualized. There's nothing wrong with the way either you or Amanda feels.

      October 15, 2010 at 15:26 | Report abuse |
    • b.g.

      Yeah, the onus should totally be on the sick person to make the healthy people feel better.

      I don't think so. I imagine you've done at least some of the things listed in the article, and you're rationalizing to make yourself feel less guilty.

      October 16, 2010 at 21:40 | Report abuse |
  32. Hhinson

    And, for the love of God, DON'T tell their kids, "you know you have to be a 'good' boy or girl for your mom right now...." Why? BECAUSE: it's unlikely that the kids are "bad" to begin with, and you, the well-meaning idiot, have just told them that maybe their mom is sick because of something they did. You've also made them afraid to talk about THEIR feelings.

    Children of cancer patients are more aware than you are of what cancer means. They could lose their parent. Mom won't be there for their graduation, weddings, grandchildren. Who will take care of them if something happens to both parents?

    The nicest thing you can do is give them a hug and be there to talk if they want to listen. They, too, have feelings of anger, guilt and fear, yet their needs usually fall by the wayside because of the focus on the patient.

    October 15, 2010 at 13:07 | Report abuse | Reply
  33. Kat

    My mother lost her battle with BC 18 months ago.
    She would never bring it up to people when they would talk with her, but their comments and HOW they said their comments made the world of difference. Another thing to add – dont buy "how to survive cancer' books or 'how to stay positive while sitting through chemo" books and leave them on the doorstep. the thought is nice... but its just plain rude. If it was in a book- then no one would have cancer! If they wanted to read a book like that- they would have purchased it anyway.
    I agree with the author & Hhinson: the nicest thing you can do is talk, hold thier hand, hug – but its up to them. As time passed with family members and close friends people will open up and truely express how they feel & ask for help if desired or needed.

    October 15, 2010 at 13:29 | Report abuse | Reply
    • Thriver

      I'm sorry about the loss of your mom.

      October 15, 2010 at 18:39 | Report abuse |
  34. ALMA

    Excellent article. My mom small intestine cancer stage 4 chemo is not appropriate for a 77 yrs old but she wants chemo, no radio, doctor will give 3 sessions and see how tumor reduces, also my sister in law bc both on June 2010. It's so difficult seeing your mother ill every day loosing weights. If any one has a family member or any friend with small intestine cancer, 4th portion of duodenum, please send me info. But I trust God he can do a miracle. Let's pray for all cancer people. A Hug for you, you look GREAT.

    October 15, 2010 at 13:38 | Report abuse | Reply
  35. Mimi

    Thank you! Your insights are astute and greatly needed. You are amazing and gracious. Everyone should heed your suggestions and become attuned. I applaud you and your willingness to share. You are beautiful and remarkable!!!! You are in my thoughts and daily meditations. With gratitude.

    October 15, 2010 at 13:56 | Report abuse | Reply
  36. Virginia

    Thank you for refreshing suggestions, which are similar to another author's who in particular commented at diagnosis and early treatment you have nothing to care for others' grief. I know, while waiting around to find out if I had ovarian cancer (I didn't) it's a cold, isolated, icy place, I was suddenly different, and the only people I wanted to talk to were the nurses and surgeon. My mother is (hope) a breast cancer survivor and she handles it by being bluntly open about it, like a soldier. I'm glad people can talk about it openly (if they choose) but I think you have to have been there to understand the road.

    October 15, 2010 at 14:25 | Report abuse | Reply
  37. Leanna

    AMEN!! Very well said – every last word!

    October 15, 2010 at 14:25 | Report abuse | Reply
  38. Cancer Survivor

    For more cancer treatment tips and information, there is a great site from a non-profit organization called NCCN. They have all types of cancer information, treatment options, tips to go throughout your day with cancer. http://www.nccn.com/

    October 15, 2010 at 14:40 | Report abuse | Reply
  39. Amo

    Thank you!!! Everything you have described in your post I have heard or felt as well. No person who is surviving cancer wants to be reminded of the disease by every single person they encounter. I have even been told by well meaning relatives "I wish it were me instead of you" "I've already lived my life" This is NOT helpful people!!! And by the way who said I was done living mine???
    And to Lisa's comment, even though I am very lucky and the treatments have not been terribly harsh, the last thing I feel is that it's "no big deal" The emotional hell more than makes up for the lack of physical pain. I am 4 months post op with 8 months of chemo left. All I want to hear is that people have gone through this and lived another 50 years. (I am 41)
    Amanda, you are brave and beautiful, truly an inspiration. I couldn't agree with you more and I appreciate you sharing your thoughts on cancer etiquette. Seems like most of us are feeling the same way!

    October 15, 2010 at 14:54 | Report abuse | Reply
  40. Roger


    October 15, 2010 at 15:37 | Report abuse | Reply
  41. Cindy

    One more: Don't bring up others you know who has died from cancer. Someone who just learned my sister had breast cancer, just had to mention that a mutual acquaintance, who was only a few years older than my sister, had just died from breast cancer. My mother and I knew about the death, but also were smart enough to not say anything, until blabber-mouth chimed.

    October 15, 2010 at 15:50 | Report abuse | Reply
  42. Liz

    Excellent words for all of us. Hearing someone has cancer, historically, is not like hearing someone has diabetes or emphysema. Cancer has long been associated with "end of life". Of course it isn't. Enormous strides have been made in treatment and survival rates, and cures. Let's strive to treat cancer patients the way we treat those with other diseases. With empathy and concern, but not doom and gloom. It's a big bump in their road but not the edge of a cliff.

    October 15, 2010 at 15:52 | Report abuse | Reply
  43. Julie

    Thanks for this!! Almost all these happened to me after being diagnosed with breast cancer. While I tried to take things in
    the spirit in which, I hope, they were meant, sometimes I just wanted to sound off.....So, thanks to you for doing so! I am currently a happy, healthy, 8 year survivor...

    October 15, 2010 at 16:24 | Report abuse | Reply
  44. Sue

    What a great article! As a survivor myself, I was horrified by comments by my "closest friends" (including someone who asked if her 'overly hairy' husband should get chemo instead of electrolysis!) It is indeed a life-altering event and experience, so please try to understand there will be lots of changes ahead. Families and friends, stay strong and rely each other and faith - and blessings to all survivors!!

    October 15, 2010 at 16:34 | Report abuse | Reply
  45. Linda

    Great article..I wish it had been available when I went thurgh my diagnosis and bilateral mastectomy. My family had no idea how to handle it. Thought they were trying to help they scared me to death. They couldn't handle it. The words of advice are wonderful. I am a 2 year BC survivor and I did fight like a girl! It was so important to me when friends would ask about my hair growth and how it was coming, asking about my treatments and giving me their strength. Thanks for sharing~

    October 15, 2010 at 16:45 | Report abuse | Reply
  46. Ilse

    People who would never say these things to someone with cancer often won't hesitate to say them to that person's caregiver or partner, or to ask questions they never would of the person with cancer. My partner had bilateral mastectomies and will start chemo for BC in a few days, and I've started hiding from neighbors and people at work who have those stories of survival or non-survival. I'm scared and anxious too.

    October 15, 2010 at 16:47 | Report abuse | Reply
  47. Robert Meek

    They do this with almost anything they fear, people do. I remember telling a friend, a RN at that, that I was newly diagnosed with HIV, and she burst out in tears, wailing, howling, shrieking, crying, "Oh, god! Not YOU!" on and on and on she went.

    I had to tell her over and over and over that I was okay, that my medicine was working, that I was fine, and she wasn't capable of believing it. She actually seemed to want me to not be fine, to be dying, to justify her behavior.

    Looking back on it, I wish I'd told her off, and gotten angry with her.

    She made it all about her and her wailing, howling, shrieking, and screaming about it.

    That was 8 years ago, and I'm still here.

    October 15, 2010 at 17:07 | Report abuse | Reply
  48. lockwood5

    I am sure getting a cancer diagnosis is very Very difficult. As an empathetic person, that is exactly why it would be very Very difficult for me to hold back tears if one of my good friends told me she had cancer. I would want with every fiber of my being to be the rock of support she needed, but holding back tears would be way beyond my control. I resent that this authentic reaction would be seen as "making it about me." Another reaction that might be beyond my control is a subtle change in my facial expression the next time I see the person so Enayati's characterization of that as "faux pity" is pretty reprehensible to me. In all likelihood, the sympathizing person's pity is 100% genuine and not something she can cast out of herself or completely steel herself against showing. It is precisely my tendencies toward sympathy and empathy that would evoke the responses this author is condemning. So Enayati, on the inevitable day that one of my friends tells me she has been diagnosed with breast cancer, do you suggest I turn and run to avoid her having to deal with my tears?

    October 15, 2010 at 17:16 | Report abuse | Reply
    • Donna

      This post really is "all about you". I can tell you that people will be annoyed with you if you cry. It will be hurting them and not helping them. You seem to care more about your own expression of feelings than the feelings of others that would be in a much worse situation than you would be upon hearing the news. Something you could work on.

      October 16, 2010 at 23:04 | Report abuse |
    • lockwood5

      @Donna: I just don't see how being unable to control my genuine reaction makes me a selfish person. Broken perhaps, but selfish, how? And really, what do those of you who say it's a crime to cry upon hearing the news suggest we do?

      October 18, 2010 at 14:17 | Report abuse |
    • lockwood5

      A good metaphor would be, would you call someone who faints at the sight of blood selfish? The reflex reaction is the same.

      October 18, 2010 at 15:07 | Report abuse |
  49. Kevin

    I mostly agree, my father had lung cancer, passed away 4 years ago from it (I am 21).
    However, it can be rewarding to talk to the friend/family member about what ailes them. Assuming you understand what your friend is like, you SHOULD be able to determine if the occasion chat about their well-being and how it is affecting them is needed.
    When my father underwent chemotherapy he was not able to do anything around the house. He was barely able to go from bed to his chair. One of his passions was working on his car (79 Porsche), but he was unable to do so. So I told him my friend and I (I was 16 at the time) were going to get it running.
    He enjoyed staring out the window, yelling out (yelling might be pushing it) what we're doing wrong. It was a favorite past-time while it lasted.

    I simply ask that people consider others' position before striking up banter, about the condition or otherwise. If you are a friend / family member, I would hope that you would be able to tell what would be the best course of conversation or action to take.

    The same can be applied to the close-friends or family of someone who has LOST their battle with cancer.
    Even now, four years later, I am still uneasy (sometimes down right pissed-off) when people make jokes or light of such situations.

    October 15, 2010 at 17:46 | Report abuse | Reply
  50. Lisa

    Amen for this article. As a breast cancer survivor, I got ALL of those responses and it drove me crazy. There are good days and bad days while going thru treatment. I knew I looked terrible, but my true friends would tell me how beautiful I looked just to keep my spirits up. It did help and I would tell them I knew they were lying but we could still laugh about it.
    I can tell you that a great doctor and a lot of faith and prayer got me thru mine! I am almost a 5 year BC survivor!!

    October 15, 2010 at 17:54 | Report abuse | Reply
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