A question for the Breast Cancer Community

Thinking about how other people talk about your or your loved one’s condition, what are some words or perceptions that make you cringe? What do you wish people wouldn’t say?

Answers from the Community

What made me cringe at the time was remarks like, “This is just a bump in the road. You’ll be fine,” and “Oh, my friend or family had to have a double mastectomy. This is nothing,” and “Oh, I’m sorry to hear about your diagnosis. My sister, friend, et cetera, died last year from this.” Really?

I think that when I hear people talk about me specifically, or breast cancer or cancer in general, I really dislike the phrase beating cancer because it implies that if you die, you didn’t try hard enough and that you didn’t beat it. When I know people who have died from it that fought “as hard as possible”. And so I don’t like the phrase that if you live through your experience, it means that you beat it because if you didn’t live, it somehow means that you did not beat it. So I don’t like that. Just in general, I feel like breast cancer is very highly publicized and focused on. I don’t love all the branding I guess, pink and all of that. But I get that in order to fundraise, you need branding and marketing. And I am trying to think about other things with cancer specifically. I should have thought about this specific question more. I think, I mean, the beating cancer thing is just what really bothers me the most, but in terms of what people have said to me… Well, I guess the other thing that has actually bothered me is a lot of people, when talking to me talk about other people that they know with cancer or even breast cancer, but until I had breast cancer, I didn’t know how many different types there were. So I didn’t understand that telling somebody who has HER2 positive cancer, what it was like for your cousin whatever, who had a different form of breast cancer, like they’re just not comparable. And the situations are so different, the treatments are so different that I think I can appreciate that people are trying to help. So I still feel loved by it, but I do wish that people overall would just be better educated on the fact that cancer is very nuanced, and so to talk about someone else’s cancer experience in order to try to support someone that you know is not, to me personally, was not super helpful.

Well, I have been told that I look sad all the time. Well, be in pain and you’ll be sad too. I’ve been working on it, trying to hide the pain. Let’s see, I think they might say I’m weak even though they say I’m strong. I wouldn’t say weak. Just scratch that one. I’m not weak, they wouldn’t say that. They would say I’m emotional, too emotional, too needy, high maintenance, annoying, too much work. And the thing that I cannot stand someone to say is, I know they mean well, but, “You’re so strong.” And I don’t know, I guess I can’t get really mad about anything like that. I can’t think about it at the moment, but yeah, I just don’t like the negativity that is associated with cancer. And actually, my best friend growing up since fourth grade, we were 12, 11, 12, whatever you are in fourth grade, I’m now 51, and now over four years he has not called me once and said anything to me, come to visit, nothing. So no more best friends, which I’m glad I saw that. Anyway, yeah, that’s my answer.

Well, what do others say? Mostly anybody I know has pretty much forgotten than I ever had cancer. They even say they forget if I happen to bring it up, which I don’t very often, but if I happen to mention it, Oh, you had cancer. So I mean, they don’t say anything rude, or unusual, or solicitous, or anything like that. I haven’t had that experience. Again, these are all new people in my life for the most part. I moved. I do have a know-it-all sister though, who in the beginning really made me rethink everything 14 times. She just, no matter what I said, that wasn’t the right decision. So she was a little off putting. But that’s all behind me now and so, I’ve moved on from there.

Well, the hardest thing was at the beginning. When I told them I had metastatic breast cancer, everybody would ask me, “Well, why aren’t you getting a mastectomy? What’s going on? Why aren’t they doing this?” And people didn’t understand that once it spreads to another part of your body, mine had already spread to the bones, that they no longer consider breast surgery. It’s all about spreading. So whenever somebody says to me, “Oh, so you’ve had a mastectomy,” or something like that, it just makes me cringe. And it’s like, “No, it’s already spread. I have metastatic breast cancer. It’s stage four.” And when I was just taking hormone meds they’re like, “Well why aren’t you doing chemo? Why aren’t you doing this? Why aren’t you doing that?” And it really bothers me because I ordered a ton of just little brochures that explained it, but yet when I tried to give them to these people that were always asking me questions, they just didn’t want to read it. They thought they knew everything and they would compare it with people that they knew and what had happened with them and would frequently tell me that, “Oh, you’re going to be a survivor someday.” No, I’m not. I have stage four. At the most I am is a thriver. I can basically treat it, but it’s never going to have a cure. I just wish more people would understand the difference between metastatic and early stage breast cancer.

I haven’t heard anything negative from my friends or relatives. So I don’t know. I mean, I’ve gotten supportive things, supportive words. I’ve been told I’m strong and that I’m amazing, and it all feels good. I haven’t gotten any negative remarks to me personally, anyhow.

Well, when I hear people talk about someone with cancer, it’s like you’re a dead person already. So, I wish that people would understand that there’s a lot of different kinds of cancer and people respond differently. So, I don’t want people feeling sorry for me. It makes me cringe when I see people looking like they’re apologizing that I’m going to die. Well, everyone’s going to die. So, just understand that it’s a chronic condition like diabetes.

I have metastatic breast cancer, and I think the most frustrating thing is that breast cancer in general is perceived as a curable disease. In reality, when most cancer patients have a reoccurrence at some point in their lifetime and also people just don’t understand that metastatic means a lifetime of treatment. People always say, “Oh, how much longer are you on treatment? How much longer do you have to be this?” And it’s just forever. And honestly, the fact that nobody really understands metastatic breast cancer at all. Nobody understands it.

I’m pretty irreverent so I surround myself with pretty blunt and irreverent people. It’s probably very little that makes me cringe or things that I wish people wouldn’t say. I do have a couple of people in my life who are still in complete denial about the condition and say things like, “Oh, you’ll be around for a long time.” That makes me more sad than anything else, because I think it’s just not accepting reality, but there’s pretty much nothing off the table for me. I have to laugh because I was having lunch with two friends. The three of us were getting together and one of the friends was running late. And so the second friend texted and said, “Hurry up, Jet doesn’t have that much time left.” I thought that was funny. And we were ended up laughing and the waiter didn’t know what to do with us with laughing about that I didn’t have that much time left. But it was just a funny reminder that it’s very serious and sobering, but it’s also just something that I live with every day. And the longer that … I’ve been metastatic since 2016. The longer that I go, I think that helps too.

It’s funny because yesterday, I was at the hospital getting my monthly treatment and there was a woman that was sitting next to me. And she was really excited about the fact that she only had one more treatment to go, and then she would have radiation, and then get her boobs removed and a new set put in. And she was like, “I can’t wait. I can’t wait to ring the bell. I’m going to ring that bell and everything.” And she looked at me and I was like, “I’m happy for you. And no, I will never get to ring the bell.” And she was just like, “Oh, I’m sorry.” And I don’t know, it kinda just irritated me that she was just pretty much going around bragging. It felt like she was bragging to me about the fact that she got to ring the bell and I don’t. And that’s a hard pill to swallow is that I will never get to ring that bell unless a cure comes out in my lifetime. Other people, I guess, at this moment, it’s not a bad thing that they say it, but for me, it’s just annoying to hear is, “I’m praying for you. I’m constantly praying for you and you’ll get through this,” is another one. No. I won’t get through this. What do I wish that people wouldn’t say? Yeah. I think those are the two things for me is, “I’m praying for you,” or, “We’re praying for you and you’ll get through this.” Those two are the biggest ones that I can’t stand people saying to me.

I don’t have any problems with what people say. I don’t get out and about to see very many people, and I’m an introvert, so I keep to myself. But doctors… Now, that’s a different story. I get very aggravated with every doctor I’ve seen, and there have been many. They assume I have neuropathy of my feet. I have erythromelalgia of my feet, and perhaps there is some nerve damage associated with it, but I do not have neuropathy, and I resent that it’s on my chart. Every time I mention something about my feet and how hot they… Even though I say, “My feet are really hot. They burn,” they immediately talk about the pain in my feet and my [inaudible 00:00:51]. There is no pain. It’s erythromelalgia. I know what it is. But it’s still on my chart. It drives me crazy.

“Oh my god, I’m so sorry.” I’m doing okay as long as I do what the doctor tells me to do. When most people learn, they’re shocked. They don’t know what to say. They’re like, “How could this be? You look so healthy,” but I don’t cringe. They don’t know what to say. Difficult on that side as well as this side, but there isn’t much I wish they wouldn’t say. We can’t say right, and you can’t say wrong. You just say what you feel. It’s up to me how I decide to react to it. Like I said, people say what they’re going to say, and I laugh or I tell them, “Yeah, I know, right.” It’s always all good, just keeping a positive attitude.

There are so many ways I could answer this question. So I’m going to try and see if I can remember all of them, because my brain is fried. Chemo brain still lasts longer than chemo. So, let’s see here. Words or perceptions that make me cringe. You’re a warrior. You’re a survivor. When people… When I say, “Well, I finished chemo,” and they say, “God is good.” Or, “You made it.” Or, “You’re healed.” That makes me crazy because the healing process, I feel like only really starts… I feel like it almost is never ending. It goes on for a long, long time. So just because treatment is over, doesn’t mean that the fight is over. And in the previous question, when I said all of my supporters and how they would message me and text me, once everything was over, all of that stopped. So, that makes me super frustrated that people think that once the treatment is over, that your fight is over. Man, I didn’t think I’d get upset about this one either. It’s not over when treatment’s over. It’s never over, because you always have to go follow up with the oncologist. And the only reason you go to an oncologist is because of cancer. Other things that make me completely cringe is everything having to do with breast cancer, the pink ribbons and smiles. And it doesn’t matter if you’re bald and it doesn’t matter about anything else. But if you have your pink ribbon and a smile, you can conquer anything. And every website, I feel, misrepresents what breast cancer looks like because it’s catching everyone maybe it’s on a good day or a good hour. But that’s not what cancer, or what breast cancer looks like. It’s really hard. It’s really draining. It’s really challenging. It’s not all pink ribbons and smiles about everything. So, I wish that people wouldn’t use that as their method of measuring cancer, because they think that because you have breast cancer, so you must have all of your pink ribbons and your smiles and everything. And don’t get me wrong, I was the girl that went to chemo with the pink cape, with the pink ribbons and the pink scepter with my pink ribbon on that and streamers. And I was that girl. But I want people to know that that’s not where it ends and that’s not the end of the story because the story just keeps going on. I want people to know that surgery is really hard. I want people to know that there are so many things that happen in the course of breast cancer treatment that can cause women to go into early menopause. So, it’s not all pink ribbons and rainbows and smiles because menopause sucks. I wish that people would not say… Something that makes me cringe rather is, “Oh, my sister had cancer and she’s fine, and you’ll be fine.” Or any other family member, friend, or anyone else, because there are so many different types of breast cancer. I absolutely cringe when somebody tries to relate my cancer to somebody else’s cancer, even if it was still breast cancer. Makes me cringe. Makes me want to throw up on them, actually. I wish that people wouldn’t say, “Oh, so-and-so had cancer and their eyelashes never came back.” Like, seriously, why are you telling me this? That doesn’t help anything. What do I wish people wouldn’t say also? Don’t compare cancers. Don’t tell me about your friend who never got their eyelashes back. And for goodness sake, please do not suggest the latest and greatest food thing that you’ve heard about that can cure cancer or how you can have only carrot. I was about to say celery and carrot, but it came out as one word. That if you eat only carrots, your cancer will die or whatever. And you’ll… It makes me cringe, hearing people offer their food suggestions when they have not been through this process. As if I haven’t looked into things, as if I don’t know, as if I am stupid, as if my doctors are stupid. I find all of that super frustrating. What else do I wish people wouldn’t say? I wish people wouldn’t get the idea that once treatment is done, everything’s over and that you just go back to normal life. I wish people wouldn’t say that. And I wish people wouldn’t say when I tell them that I’m chemo brain or that I’m fatigued and they say, “Oh, well, I’m tired too.” They have no idea what they’re talking about. Zero. And I wish they wouldn’t say that at all.

I wish people wouldn’t tell me they have a cure for my disease, or they have heard of the newest and greatest herbs or supplement or vitamin that will cure my disease. When, of course, there is no such thing. I also hate when people say, “Oh, you’ve got this,” or, “You’ll be okay.” I know their intentions are good, but they still rub me the wrong way.

Friends and relatives are like, “Oh, I would never want to lose my hair,” or “Oof, I would never want to gain weight from my medicine,” which makes me cringe. You know what else makes me cringe the most during the pandemic? They don’t believe that it’s real. I have to visit a certain family member. They don’t believe in masks. Even if I’m stage four cancer, just had chemo last week, and they still didn’t wear a mask around me. I had to wear a mask. That made me cringe.

One of the things I hear all the time, and this is in even advertising on TV and on the radio for various medications with various cancer treatments is my new normal. It’s not my new normal. It’s just how life is. New normal is suggestive that you chose to have this new life. We don’t choose to get cancer. We don’t choose to have permanent side effects following cancer treatments. And I just don’t like that comment of your new normal. Another one people say, and you hear this in everyday life as well is, “It is what it is.” And a third one that really gets me is, “Well, your cancer treatment is done now, how come you’re not feeling normal?” Define normal after cancer treatment and its side effects. They don’t understand that chemotherapy is poison to the body. Sometimes those side effects can be permanent and last for a very, very long time. So a lot of times they just don’t understand and they don’t ask and they don’t take the time to learn.