October's coming...what language can you tolerate?

sbelizabeth

I know we each have preferences regarding how our experience with breast cancer is described.

Some like "breast cancer journey," others despise it.

"Survivor." Some of us hate that word. But what word can express what we've been through?

Save the ta-ta's. I (heart) my boobies. Save second base. There are some "hot button" words and phrases out there for us. What are yours? And what do you prefer instead?

Traveltext

Hate the journey descriptor because who would choose a cancer journey? Survivor, well everyone alive is a survivor in one way or another or from some disease or another.

Excluding stage IV patients, we all share more or less similar experiences of diagnosis, treatment and prognosis concerns. Some people dwell in this phase longer than others depending on their complications, post mx ops, etc, and further treatments. To me this phase consists of medical incidents or occurrences that I can share with others in my situation. Because of the diversity of what we all go through, I can't say I have one term to describe this part of my life.

As to the "hot button" terms, some women I know hate the sexualisation of the disease, others see it as a funny ha ha fundraising gimmick, and others, who have forgone reconstruction, feel very marginalised and upset by that sort of banter.

I have to say that I didn't know I had breasts until I got breast cancer, but now my mantra is "Men have breasts too".

Lily55

Words I feel diminish our experience , journey, tatas, girls (REALLY?), mammograms save lives, think pink (it makes money for breast cancer research (does it heck its a scam).........)

You got me on a roll, to be honest I DREAD October as there is no escape from it and all the worthy people "doing my bit" make me want to puke, they have NO idea........

Lily55

i am surprised there aren't more comments on this thread, maybe because pretty much the whole of Pinktober offends us on the other side?

Traveltext

Pinktober is the month that reinforces bc as a disease that only women get. We're only one per cent of new cases, but later diagnosis leads to poorer prognosis and pink charities need to be called out when they ignore this fact

Sjacobs146

I have a love/hate relationship with Pinktober. I hate the marketing, and the fact that large companies make money off of our misery. I hate the sexualization of BC. But on the other hand, I have been the beneficiary of BC related charities, and I am grateful for that.

nihahi

Hi Sbe..... Waving at you this morning.

As you know, my preferred "descriptor" is veteran. It indicates we have been through something monumental, that will forever be part of us, but we got through it (albeit, with emotions/scars/physical limitations or changes that will forever be part of us). It is a term that should indicate that unless you've "been there too", you really DON'T "get it", it should mean access to medical/emotional understanding and help. It should mean "respect"!

The disgusting and hurtful trivializing, commercial kidnapping and sexual innuendo of the vast majority of Pinktober crap yearly infuriates me.....!!!!!!

sbelizabeth

Hi, Nihahi, waving back!

I do love the term "veteran." For all the reasons you so clearly expressed.

When fundraising events for prostate or testicular cancer feature men with wildly-printed boxer shorts worn on top of their trousers, sporting slogans such as "cure the cajones!" or (heaven forbid) "finger up the butt saves lives!" then I might feel a bit better about pink tutus, pink wigs, pink "save the ta-ta's" shirts. But probably not.

tangandchris

I like the term veteran too....

I'm not sure what language I can tolerate to be honest. I was dx'd in October so it just makes the whole thing one big cluster of emotional mess for me. I know for sure I don't like survivor, it doesn't feel right to me.

I'll probably write more later.

muska

I don't like survivor either but honestly, I don't care much what we are called. I understand why some folks may hate Pinktober but I am not sure it warrants so many emotions. After all, they do raise public awareness about this disease.

I did some fundraising and lead two teams for the ACS' Making Strides events over the last three years and I can assure you they always made sure men are included in the descriptions.

Overall, I would say raising awareness is better than the opposite. Keep in mind that the process of raising awareness should never stop and remember how much you knew about this disease when you first diagnosed.

Traveltext

For all the reasons nihahi listed, I too like veteran to describe what I've been through and the aftermath of treatment for this disease. But not because I've been through a "battle" because we really aren't at war with our bodies.

I have to say that I'm not mad on the term previvor which is increasingly being used to describe people with a genetic predisposition to bc (or other diseases) but who haven't got them yet. I'd suggest everyone in the world is a previvor of something or other

Lily55

I am only a survivor of breast cancer when I die of something else! I like veteran but it does have echoes of a battle, I wonder about the word " graduate" as it indicates its something you work through?

sbelizabeth

Before I had breast cancer, I would see events for breast cancer "awareness" and was amused by all the celebratory atmosphere. People wearing wild pink clothing, cheering, etc. It didn't mean much to me at the time, because I was already getting my mammograms every year, and I was "aware" of breast cancer.

It could be that in the beginning, all the crazy pinkness served the purpose of "coming out." In the distant past, breast cancer was something of a shameful disease. People didn't talk about it. Women ignored symptoms until they were dying. We needed a social reformation to make it okay to say the word "breast" and okay to talk about breast cancer. We've done that. We're reformed.

Now, after my experience with breast cancer, when I'm exposed to the celebrations and ribbons and balloons, I think about friends who died ugly, painful deaths. The hoopla just feels wrong. My son urges me to quit being a sorehead and be thankful for the fund-raising for research, and maybe I should.

Actually, truth be told, I really do like the color pink. I hate that it's become the color of the disease that tried to kill me.

weesa

Good thought-provoking post, Elizabeth.

I have tried describing myself as a breast cancer defeater, breast cancer survivalist, breast cancer outlaster. Sometimes I describe myself as "rescued from bc, or simply NED." I don't care for "bc survivor"-- like so many others here.

I take a childish satisfaction in referring to the tenth month of the year as "Focktober."

Kicks

I HATE the color pink! Have for as long as I can remember and as soon as I was old enough to refuse to wear any clothes that wear pink or had pink on them (purple too), I did and that was that. Any one who knew me knew to never give me anything pink.

With that said - I now wear some pink during Oct. I do agree that I hate how some make money off of selling 'pink stuff' but if seeing someone wearing pink during Oct raises awareness - then that's great and if even only one person (woman or man) seeks more information for themself or loved one - that matters more than the selfing/self serving 'idjots'.

Hubby and adult Son wear pink wrist bands all the time. It is amazing how many will ask them about the wrist bands and want to talk. They often give my number (or email) and I do get calls from some who just want to talk.

Veteran - I am a Veteran as I was Army. I am an IBC Survivor at I have survived yrs since DX and TX. I have survived the yrs since DX - who knows what tomorrow will bring - no one knows but no matter what comes - I am an IBC Survivor today. I've survived a lot of 'things' in my life - that makes me a survior for which I am proud of having done.

Just how I feel. We have each lived very different lives/had different life experiences - I am an USA Veteran and an IBC Survivor.

labelle

I've grown to hate October. Just looking for a nice quiet place to hide until it's over. Blech!

Traveltext

While veteran is often used in reference to military, police, and fire personnel, the word is also used to describe a person who has had a long experience in other fields of endeavor.

So, I'm already a stroke veteran and I'm hoping to be an IBC veteran. After that a PC veteran!!

sandcastle

HATE!! The whole month....so I am going on a Cruise! Bye Bye....Liz

HelenWNZ

This will be my first pink October and I am definitely not feeling the love. My workplace gets all hyped up with lovely pink morning teas and dress ups. Last year I was with them this year laid up on the couch with two rounds of chemo lined up for this month the same joy is not there. Funny that. I appreciate the awareness it brings, the fund raising and it's good intentions but.......nah not this year.

MinusTwo

Is there anyone who is no longer aware? Let's spend the money in a better ways than pink shoes on football players, like research, and move on to a cure for heaven's sake. The hoopla is very offensive to me. I try to hide like labelle & sandcastle.

I don't like the connotations of war associated with "veteran" since I personally don't like to think of cancer as a battle. However I believe what Traveltext said about other meanings of the word and I can't think of anything better - even after 5 years. It's too hard to explain NED even if I proudly wear that title.

ChiSandy

I just say “I had breast cancer" and leave it at that. When I die of something else, then my obit can say I was a “survivor.” BTW, last year I bought NorthShore Health System/Chicago Bears pink tees that said “Real Bears Fans Wear Pink.” On the one hand, 100% of proceeds did go directly Bears Care, which forwards the money to local charities that specifically assist breast cancer patients and their families, not to bullshit “awareness” programs…on the other, the Bears sucked last year and this year promise to suck even harder. And most of the time I wore the shirt on game day, they lost. (But this year’s shirt is black with pink print, which at least makes the wearer look thinner).

“Save Second Base" is probably the most offensive of the slogans—because it implies that the worst thing about having breast cancer is that it forecloses men's ability to feel us up. (And that men—that is, those men who don't get breast cancer—are the real victims of the disease). But all of the slogans that say “Save the (insert mammary euphemism)" miss the point entirely: that the object of detecting and treating breast cancer is not to preserve breasts (and that not all early stage, even in situ, breast tumors should be treated via lumpectomy)—but rather to improve odds of mets-free survival, forestall or even (eventually, should research achieve it) prevent mets, and lengthen survival of metastatic patients as much as possible, perhaps even to the end of their normal statistical lifespans.

So how about “Save the Lives?”

Traveltext

When I say "I had breast cancer", people think great, he's cured. So I say "I have breast cancer" then explain the concept of NED (previously called remission).

I'd buy anything pink where 100% of the proceeds went to a reputable cancer charity that had reasonable admin expenses and was directly helping people with the disease, not just raising awareness. Love your story, ChiSandy, about your team losing when you wear the pink. And that they are at least going for the pink on black this year. Hopefully, everyone will look slim, and things will change for the team! sort of win win.

As to the sexualization of the disease, it surprises me that so many women are happy to go along with this caper. It is obviously a way to reach a demographic that responds to such slogans and imagery, ie males, in the hope that the charity will raise more cash, but the terminology makes the whole bc treatment process look like a jolly little interlude to life rather that the start of perpetual worry and, very possibly, further treatment.

Agree with "Save the Lives", but most charities play down the Stage IV part of the equation, since this stage represents a seemingly hopeless cause. Unfortunately, it is where most of the funds raised should be directed.

CassieCat

ChiSandy, you summed up my thoughts. Thanks for saying it all so articulately.

Fiddler

I so agree with all these comments. This whole "awareness" thing drives me batty! We are all aware of BC, are we not?!

16 years ago I was diagnosed with a blood condition that is a precursor to Multiple Myeloma and another very rare blood disease. Pink washing just always re-emphasized to me how few people are aware of less common but still deadly cancers and diseases. Well I'm glad to say that now that I've been diagnosed with BC, my feelings have not changed a bit! But God forbid you should mention in passing how annoying all the pink is. People just don't get it......and "save second base"? How utterly offensive!!!

sbelizabeth

I had a unilateral mastectomy in April 2012 and a delayed reconstruction in April 2013, so for a year I got along as a uni.

There was a tee-shirt that I did find amusing--

"I lost my breast. I think it's in my purse somewhere."

RobinLK

OMG!! I am laughing so hard at that last one! I am a uni and rarely have my foob on. Perfect saying as mine has ended up there on days that it triggers my LE.

I like survivor as I made it through, but it does imply winners and losers. It isn't that simple.

I participated in the pinktober crap the year of my DX...also October. I cringe with all the "versaries" that come this time of year. Seeing all the pink triggers things I would rather not celebrate. It is the farthest thing from a party and yet it has become a party atmosphere.

Then there is the whole Stage IV or male bc pieces that are not addressed. Most people are awarethat breast cancer exists at this point. Time to teachthem something new. Educate, research, cure...

rozem

I live in Canada. Just saw a commercial for our big run that happens every year. I was quite impressed that the woman in the commercial was wearing a compression sleeve! I thought that really showed all the nasty side effects we live with years after treatment. It certainly isn't pink and pretty.

When I think back to how I and the other people in the chemo room looked - Pale, sickly, bald, black fingernails, no eyebrows or lashes, ports , tubes sticking out - sure ain't a pretty pink tutu disease that's for sure. No one talks about that ugliness and that of stage 4 cancer -it's not good marketing material

I can't tell you how many people have said to me no one dies of BC anymore". Wow. How did that message get out? Pinktober is partly to blame

hopefour

Such a mixed bag of emotions and not easy to put it all in words. The pink ribbon and all the smiling, happy faces were deceiving for me when I was DX. Truly was shocked with the less then happy pink process, treatment and seriousness of breast cancer…how can all the pink not have more answers and cure. But, I did reach for the reality and processed the seriousness of BC while ignoring the happy pink…. am sadden to see other woman decieved by the pink and not fully taking in what a BC DX means in its fullness! I don't celebrate all the pink, but whatever good it may bring I am thankful some of the rest is a bit of an insult...especially to our stage IV sisters.

Anonymous

I just have a hard time with very little progress on the side of new and improved therapies or improved stats in decades. Yes we of anyone out there are aware of this dark disease. I would love it if of the millions raised for BC, they would refine tests such as the PET and MRI which failed me as neither showed true size of my tumor or lymph nodes affected. I have given a donation to the cause in the past, but to trivialize our "journey" with stupid slogans is just disrespectful.

Traveltext

I think people with bc aren't the target for pink charities looking to capitalise on enthusiasm and goodwill that exists in the community towards "finding a cure to save the ta tas"and other rubbish slogans that diminishes the seriousness of having this disease.

MmeJ

Unfortunately (IMO), the pinking of October gets exaggerated in part because some women who have had BC are the loudest advocates of it, wrapping themselves in their experience and loving the attention, and it is quite socially unacceptable to call them out.

No, please don't shave your head in solidarity - come and talk to me when your hair begins falling out in clumps after you start chemo, and you have to wait a few months instead of a few days for it to grow back.

I can't imagine how lonely it can feel to be a man with BC, traveltext.

I'm a few years out now, but grapple every day with chronic complications from the treatments. The pinking doesn't disgust me to the degree it did a few years ago, but the constant television commercials in my part of the world for Cancer Treatment Centers of America creates a little sprinkle of aaack! every time I see them.

Face it, folks - we are potential revenue units. Everyone is an advertising target, no matter what the industry.

I loathe the war and sports metaphors associated with this, so I don't really call myself anything.