Newsflash: Breast Cancer Sucks, and You Can Die From It

As we wind towards October, the very pinkest month of the year, the month when the media bombards us with breast cancer news, breast cancer survivor stories, breast cancer foot races, breast cancer bracelets, breast cancer blah blah blah, I find myself feeling rather cross.

You see, it's all quite admirable that through Breast Cancer Awareness Month, the media has now made us aware of breast cancer, that anyone can get it, that everyone should be on the lookout for it, that survivors walk (and run 5k races) amongst us. The color we all associate with breast cancer is pink, the same color we associate with those fabulous, sexy females from Sex and the City. We have beauty products brought to us by "Cancer Vixen", that stiletto-wearing hottie who kicked cancer's ass and lived to write eponymously-entitled cartoons about it. We have Christina Applegate announcing to anyone who will listen that her double mastectomy was a success -- "they got it all" -- and therefore it follows that she will not die of breast cancer (nay, she will live into her nineties with her cute, newly-reconstructed boobies).

Don't get me wrong: this is all great.

It means that when I was diagnosed with breast cancer in 2002, people didn't shun me or my family. Indeed, I became a bit of a celebrity in the circles in which I traveled. Everyone wanted a piece of me, it seemed. They called, they wrote, they visited, they sent me handbags, they cooked for my kids. Even my favorite shoe boutique on the Upper East Side got in on the act -- sending me a fabulous flower arrangement when I was in the hospital recovering from my double mastectomy, with a card that told me to come in for some hot new boots as soon as I was able.

More important: it also means that there was enough money in the breast cancer research pot to provide me with the efficacious treatments (including Genentech's Herceptin, a relatively new drug therapy for the specific type of breast cancer known as "her2neu+++", with which I was diagnosed) that undoubtedly saved my life.

However, there is a dark side to all this breast cancer cheer. And I am here to tell you about it. Allow me preface it by saying that it is just my opinion. I am not a doctor, nor am I married to one. And I have certainly never played on on TV.

You ready? Brace yourselves, because what I am about to say is something you don't want to hear. And scarier, it is something that many people no longer seem to realize:

Women are still dying from breast cancer.

Even with early detection. Even with a good attitude. Even with talented surgeons and targeted therapies. If you don't believe me, take a look at the Bulletin Boards on the Young Survival Coalition's web site. Or on the Her2Neu (a strain of breast cancer -- the one that I had) Support Board. Or the iVillage Breast Cancer Support message board.

Maybe a reality check isn't something you want when you're being bombarded with "Breast Cancer Awareness" messages. After all, that would be kind of scary. And so the message that breast cancer remains a major killer of women still gets out there, but it gets out there very quietly. And I mean that literally. For example, in television news coverage of the NYC Komen Race for the Cure, the screen briefly and silently flashed some rather ugly statistics about breast cancer before cutting to a far more lingering shot of the Knicks City Dancers executing pelvic thrusts to loud hip-hop music. They all had really nice boobs, I might add.

But the really nice thing about reality is that it empowers us to make informed and rational decisions. The sexy pink hype that now surrounds breast cancer has misled some of us into thinking that breast cancer is something less than a very ugly, life-threatening illness for which the treatment is brutal, nay, cruel.

A friend of mine recently confided in me that she tested positive for one of the BRCA gene mutations -- just like Christina Applegate. Unlike Christina, she has made it into her late forties without having had a breast cancer diagnosis. I assumed that she would be scheduling a double mastectomy soon, since she told me that her BRCA status means that she has an 85% chance of developing breast cancer during her lifetime. That's a pretty significant likelihood, and one which she could significantly reduce by having her breasts removed.

But I was wrong. At this point, my friend has chosen not to remove her breasts but to undergo an intensive surveillance program whereby every six months she will have a mammogram, an ultrasound or an MRI (or some combination thereof). Her rationale is that a double mastectomy seems "drastic", when she could simply wait to treat the cancer if and when she gets it (which has an 85% certainty of happening).

I was surprised to hear her decision because my own experience as a breast cancer survivor taught me that surveillance is not foolproof, and that early detection does not necessarily eliminate the need for chemotherapy (or the possibility of dying of breast cancer anyway, since chemo is not a guaranteed cure for breast cancer at this point in time).

My breast cancer was "occult", meaning that it was entirely undetectable via mammogram, even after it had been diagnosed. Further, one of my three breast tumors was undetectable by any means until my breast had been removed and dissected by pathologists. That particular tumor -- invisible and unpalpable -- was nearly an inch in size.

But mostly, I was surprised because here she has been given what I consider to be an incredible gift: the chance to avoid ever getting breast cancer, and instead, she is choosing to wait for a diagnosis that is 85% likely to occur. And the thing about waiting for a diagnosis is that you don' t really know how it's going to play out.

In my case, I had caught my breast cancer very very early -- as soon as I could feel it, which was the earliest that it could be caught, since it was in essence, "invisible". Nevertheless, it was already at "Stage 2" with three lymph nodes involved. I was told by my doctor that if I wanted to increase my chances of surviving beyond 65%, I would have to have chemotherapy.

While chemo wasn't the worst thing that could ever have happened to me in my life, it was definitely extremely unpleasant. Far more unpleasant than my double mastectomy. Losing my hair, my eyelashes and my eyebrows, gaining 20 pounds for no apparent reason, not being able to take my children to school because I couldn't get out of bed, spending a week in the hospital because the chemo rendered my immune system incapable of fighting even a stupid eye infection -- were far worse to me than losing my breasts. And if I could have avoided all of that by having my breasts removed in advance -- hell, by having my breasts, a pinky finger and an eyeball removed in advance -- I would have gladly done so.

Let me put it another way: if you never get breast cancer, you never have to have chemo for breast cancer. And chemo truly sucks.

On the other hand, chemo saves lives. Of course if you never get breast cancer, then you don't have to worry about dying from breast cancer.

But if you do get breast cancer, you can die from it.

It's not something that we hear a lot about in this day and age of pink empowerment and stiletto-wearing, ass-kicking cancer survivor cartoons. But it's something that I believe we all need to remember even as we're singing the praises of early detection and cheering on the drug companies that arm us with increasingly effective drug therapies. Because surviving breast cancer is great, but never getting it is even better. And in my opinion, anyone who has the power to choose to reduce her chances of getting breast cancer from 85% to almost nil ought never to be misled by all that rosy-hued cheer into thinking otherwise.

Comments

[peabodyqp]

I am one of those will probably die from breast cancer. I was diag. in 1994 at age 32, Stage IIB; found lump myself; no risk factors. I had chemo, surgery, radiation, 5 yrs of tamoxifen, and full hysterectomy. In 2004, cancer returned to lung and has now spread to liver and bones. I've been through 3 types of hormonal trmts and on chemo for most of the past 16 months. I've been very open with my trmts during the past 14 yrs, in hopes my situation can help others. It is my opinion that getting cancer, having it return or even how it responds is often just a random. Many people truly do not realize stage IV cancer means NO cure. I've been told many times, "You are going to beat this." I have always had a positive attitude about life, but sometimes I just want to say "Don't think so."
In my perfect world, there would be a cure. Until then I want trmts that focus on how to prolong the lives of those of us with Stage IV. If the public wants to see the reality of lives with metastatic BC, read our posts at bcmets.org. I would have given up both my breasts too if it would helped my chances of surviving. As to the pink ribbon, it has certainly served its purpose, but I in the eyes of most people, it still means those who can be cured, not those who cannot.

[MartiWilkinson]

Hi peabodyqp

You are right in that people don't understand metastatic BC and one woman who I talked to with stage IV cancer said the best thing she could hope for is to be able to 'manage' the cancer. It is to be hoped that down the road treatments will progress enough so that cancer can be treated like any other chronic illness. However I don't believe there is such a thing as "beating" cancer. One can beat the flu or a cold, but the insidious thing about cancer is it comes from ones own cells.
.

[DxCancer]

I think awareness is great. I think research is great. I think the "Race for a Cure" is stupid, I think the "3 Day" is stupid. I think http://pinkstinks.org gets it right. The entire population is geared toward finding a cure instead of "Prevention Awareness". Let's spend more than 2.2% of the funds so that a cure isn't necessary. Find a cure, fund the pharmaceutical industry and still wreak havoc on women's bodies during the "cure" process. That is NOT the answer! Prevention is! Up until last year BC was still *increasing* in number despite all the platitudes, back slapping, high-fives, pink t-shirts, yogurt labels, rubber bracelets, diamond encrusted lapel pins, and coordinated pink jogging suits. They're all fools being played like a violin by the industry created to blind them with a pink light and make them "feel good" about being part of some mystical solution to a problem that creates tens of thousands of jobs each year based on the suffering of women. Here's a genuine and unique idea: Quit wasting your time trying to make yourself feel good about a Bulls**t cause when the reality of the situation is that there will never be a cure as long as there is profitability based on the misery of those afflicted by the illness. Raise money to "Prevent" and for god's sake will you please boycott all the manufacturers making millions by selling you crap because it's "Pink".

[bhw123]

NOTHING WRONG WITH PINK:

"...'When we get our hands on breast cancer, we"re going to punch it, strangle it, kick it, spit on it, choke it and pummel it until it"s good and dead. Not just horror movie dead but really, truly dead. And then we"re going to tie a pink ribbon on it'... I only encountered this message when I was walking past bus stops in sketchy parts of my city. (Is that where they think all the younger, ethnically diverse audiences they were hoping to reach live?) And the first few times I saw the ads, they reminded me of snuff porn.

What's your take on the "kick it, spit on it" kind of message? It's certainly not inspiring..."

SNUFF PORN?!?!?!?! You're kidding right??? I was dx in my 30's, am as u.m.c. and white bread as they come, and sister, that phrase is one of the most honest fighting messages I've seen. NOTHING is pretty and pink about fighting bc. NOTHING. I don't want to be inspired by Pink Tomato Soup Cans and sappy messages. I want STRENGTH and HONESTY.

Snuff Porn. How foul of a comparison is that? I hope I killed my cancer dead. Not pretty pink dead. MF'ing DEAD.

Some of my best and strongest friends have died of this at a tremendously young age. Inspires me to kill this cancer snuff porn dead. Graphic enough for you? BC is not pretty.

[equaljustice]

ALL forms of cancer suck - but the comparable killer of men - prostate cancer - gets 1/20 the funding that breast cancer gets!! Pink-washing or not, that is the unfortunate (and unconstitutional) reality!

[Lauren Cahn - Huffpost Blogger]

I am not sure that prostate cancer is the comparable killer of men. Prostate cancer is 100 percent curable at its earlier stages - my own father is a survivor. He had his prostate removed and never had to have chemo.

LUNG cancer might be the comparable killer in men - and yet another killer of women. There is a shocking number of men and women who die from non-smoker's lung cancer - like Dana Reeve and Peter Jennings. My father was diagnosed with lung cancer around the same time as Reeve and Jennings - but he survived, thank you God and Genentech (for the drug, Tarceva, which is likely what saved him, but unfortunately does not work on everyone).

Lung cancer should have WAY more research dollars and WAY more awareness and outreach. So many people believe that lung cancer strikes only smokers, and that gives it the ugly stigma of, "Oh, they did it to themselves, so let them fend for themselves."

The Komen foundation does a GREAT thing in getting the word out about breast cancer and making women less scared of it - even if all of the media coverage could be a tad more balanced. If only there were a Komen-type foundation for other forms of cancer that get less research dollars...

[NothingWrongWithPink]

Laura, have you ever read Cancer Vixen? If not, it's worth the money and time to pick up a copy. A friend whose mom was dying of cancer found solace and light in the pages of Cancer Vixen; I know women with metastatic breast cancer who pass along copies to newly diagnosed patients.

If you wanted to examine the effect of "mainstream media" on women's treatment decisions and their understanding of prognoses, you probably should have cited Marisa Acocella Marchetto's book and her cartoons' wry take on life and death -- not the fact that she's a hottie.

Whether or not Marisa is tapping her celebrity to raise awareness and funds for breast cancer research through the sale of beauty products is peripheral to your argument. There are labels on lip gloss, but how is that mainstream media?

You seem to know some places (YSC, etc.) where women discuss aspects of life with breast cancer, including death. But you missed a lot of the good ones.

More importantly, the flaw in your logic is overstating the role of mainstream media in how cancer patients make decisions. I don't know any patient who doesn't dive deep into her own research, whether that be online, through breast cancer blogs, in support groups, through books, etc. These become mainstream sources of information and support for countless women.

The message sent to the general public about breast cancer needs to be inspiring, accurate and compelling. Your post is not.

[Lauren Cahn - Huffpost Blogger]

If you actually read my article, I cite Cancer Vixen. Twice (once by name, once indirectly).

As for not knowing cancer patients who don't dive deep into their own research, I should really introduce you to my dad. Or my friend's dad. Or my friend, the 8-year survivor who never researched anything and simply used her doctor's expertise. The mainstream media is the single most powerful influence on anyone who exists in today's world. The research is something we have to seek out. The media seeks us out aggressively.

Unlike my writing, which you are free to ignore if you find it so uninspiring, innacurate and boring.

[kittycat77]

"The message sent to the general public about breast cancer needs to be inspiring..."

Really??? Says who??? Why do we need to "inspire" the general public? So they can feel better about this horrible disease? So that they won't be too scared? So that they can silently judge those women who DO die of this disease for not fighting hard enough, for not having a positive enough attitude...in other words, for not being inspiring enough?

Please.

Check out this article. It's an excellent companion piece to the one above:

http://bcaction.org/index.php?page=welcome-to-cancerland-2

Btw, even though I have had a bilateral mastectomy after a cancer diagnosis, I think surveillance is a valid option. LC, this is your friend's own decision, and I don't see how her choosing not to remove her breasts at this time has any effect on the larger problem, which is that we do not know how to prevent or cure breast cancer. Even if your friend and every other BRCA+ woman removed her breasts before getting cancer, we would still have alarmingly high rates of breast cancer diagnosis, some of the diagnoses among the same women who had had the surgery. BRCA+ women comprise only a small portion of breast cancer patients, and bilateral mastectomy is not a cure-all.

[NothingWrongWithPink]

Good point, kittycat77. Being "inspiring" is not a requirement of a mainstream message. I could have stuck with "accurate and compelling" as the minimum requirements.

Do you recall the advertising campaign that Komen launched about two years ago (beginning of 2007), with women wearing "logo" t-shirts (heads cropped off, focusing your eyes on the women's chests) that spelled out what they wanted to do to cancer?

"When we get our hands on breast cancer, we"re going to punch it, strangle it, kick it, spit on it, choke it and pummel it until it"s good and dead. Not just horror movie dead but really, truly dead. And then we"re going to tie a pink ribbon on it."

This is one of the messages that Komen's marketing team approved. For some reason, I only encountered this message when I was walking past bus stops in sketchy parts of my city. (Is that where they think all the younger, ethnically diverse audiences they were hoping to reach live?) And the first few times I saw the ads, they reminded me of snuff porn.

What's your take on the "kick it, spit on it" kind of message? It's certainly not inspiring, but plenty of people saw the ads, blogged about it, etc.

[loracc]

I applaud your friend for not rushing into having a bilateral mastectomy. The 85% number is only an approximation of the lifetime risk of getting breast cancer, and one recent study found that the risk might actually be lower. Not all women with the gene get breast cancer, and other factors like family history need to be taken into account.
Bilateral mastectomy will reduce risk by 90%, but it is important to note that a woman can go through this surgery and still get breast cancer. All of the breast tissue can not be removed, and breast cancer can develop in what remains.
I faced this quandry myself " not for the gene but for a noninvasive cancer that was discovered in a biopsy " and my experience should be a cautionary tale for anyone considering bilateral mastectomy. Twenty years ago, the medical community was evenly divided on whether women with this condition should have a bilateral mastectomy or surveillance. Today, surveillance is recommended by almost all doctors.
My very best wishes your courageous friend. It is sometimes hard to live with uncertainty, but there are other ways to reduce breast cancer risk. Physical activity, for example, is thought to reduce breast cancer risk by around 30%.

[HalaModdelmog]

HuffPost's Pick

"We appreciate your attention to the fact that we still have much work to do until the cures are found for breast cancer. At Susan G. Komen for the Cure, we also agree that advances in science have spared many women the suffering you describe and fewer women are dying of breast cancer. That, in and of itself, is progress that was not imaginable a generation ago.

Yet, women are still dying, and this is precisely why women must remain vigilant " continuing to get mammograms and being aware of any changes in their breasts. Our partners, merchandise and Susan G. Komen Race for the Cure events not only raise awareness, but they have allowed us to invest $1.2 billion to date. And, because our mission is a world without breast cancer, we have committed to fund $2 billion more for breast cancer research and care over the next 10 years with a goal of building on the science that has provided so much relief to so many."

Hala Moddelmog

President and Chief Executive Officer, Susan G. Komen for the Cure

[Wilderbeast]

Chemo saves lives in breast cancer patients? Really? Where is the proof? Chemo is extremely ineffective on most cancers, breast cancer being one of them. Chemo also causes cancer, as does radiation. Five years down the line, after the therapy is done, you will find, if you can find followups after five years, that other types of cancer crop up in former patients. Blood, bone marrow, tumors in various places.

Please read "The Cancer Industry" before you make chemo part of your recovery. Please, please please. And fully inform yourself about all of the side effects that are part of chemo and hormone therapy. And remember, cancer patients who undergo chemo "therapy" mean about $ 350,000.00 to the doctors prescribing this "care".

[MartiWilkinson]

Good Morning Wilderbeast:

When I was diagnosed with breast cancer I did my homework. I learned how to read my pathology report and I compared the statistics of women who underwent chemotherapy v. women who chose to take the surgery only option. Not all breast cancers manifest in the same way which is why a pathology report is a vital part of the planning process in recovery. There are tumor activities that will not respond to specific therapies while others will require medications like Tamoxifen.

Is cancer an industry and big bucks? Of course and we can thank the current health care system for refusing to provide universal health coverage to people and greedy pharmaceutical companies for that. I'm not a doctor or a nurse, but I've been a patient so often that I know when a sales representative is in the lobby. I had to have Neulasta injections to offset the side effects of chemo and those puppies cost about 2,000 a shot. That was 5 years ago and I can only imagine what the cost is today.

Now I've met some really well meaning people who have told me that drinking some special tea will cure cancer and have heard stories of women who ended up with terminal cancer due to quacking themselves. Personally I think it would be far more productive to support research in the area of environmental oncology which engages in a critical approach to the effects of pollution.

[Lauren Cahn - Huffpost Blogger]

MartiWilkinson- I took Procrit shots once a week, and they were five grand a pop. Thank GOD my insurance covered it. My Arimidex is covered, and my copay is $70 per month. What about the people who can't afford it? These are yet MORE reasons why if you have a way of never getting breast cancer, you should pursue that avenue. My opinion, of course. I would never ever ever have have done the wait and see if I knew there was a greater than 80 percent chance I would have to do all the chemo and continue taking anti-estrogen drugs for the rest of time! But not everyone sees it that way, and I definitely blame it on the well-meaning, well-intentioned pink ambush.

[St4BRCABabe]

Chemo may not be the best way to go, but for many BRCA1+ gals with triple negative cancer, it is the only thing known to work.

What would you suggest? Drinking green tea and watching the cancer take over our bodies?

Moderation is the key, until they come up with a cure, or at least something to help it become chronic.

[MartiWilkinson]

I was diagnosed with breast cancer at the age of 35 in 2003. The tumor wasn"t palpable either to me or the nurse practitioner who I went to for a routine pap smear. She merely suggested that I go in for a baseline mammogram and that is where the tumor showed up. After a biopsy I had a lumpectomy, chemotherapy, and radiation treatments. The cut, poison, and burn approach to treating breast cancer has been around for generations and it"s unfortunate that little is really known about the long term effects of these treatments.

During the whole process of treatment I continued to work full time while raising a child and it wasn"t easy. Even though I haven"t had a recurrence of the disease I still don"t consider myself to be "cured". It took years for the first cancer cell to develop into the lump that a mammogram picked up on. So while I have continued with life my concept of "normal" has been redefined.

It"s good to point out that there are women who still die from this disease. This pink fuzzy feel good approach masks the fact that cancer is designed to go on a search and destroy mission in the human body and it takes the pharmaceutical equivalent of squirrel hunting with hand grenades to kill the nasties. It"s also prudent to note that 80 percent of women diagnosed with breast cancer do not have a family history like the woman with the BRCA gene.

[LibraGirl63]

HuffPost's Pick

I found my own tumor but but only surgery confirmed the lump was cancerous. Initially I felt very positive about my odds to "beat" cancer. I had found it before it had spread to lymph nodes and the survival rate is over 80%. Now that I'm done chemo, reality has sunk in. My cancer was early but agressive (triple pos with highly amplified her2). Even though a mammogram did not find my cancer, a yearly mammogram is the only followup I will be offered where I live. This means that if I have a recurrence or new cancer, it is quite possible I will not catch it before it spreads. So, I will be having a double mastectomy and immediate recon next month. Some of my friends and family support this; others can't understand why I don't want to "save" my breasts.

Don't get me wrong. I am grateful for the support and advances but there is a long way to go. I just finished participating in an exercise study with other bc patients. They are a strong spirited bunch of women who made it into the gym three times a week all through their chemo, even when they felt like crap and had no hair. These tough women helped me make it through chemo; hopefully I helped them too. Sadly, if the stats are right, not all of us will beat this disease.

[Lauren Cahn - Huffpost Blogger]

Oooo. That is a sobering final thought, isn't it? I taught Yoga for Breast Cancer Survivors to a group of, in total, about seven women. All of them are still alive and kicking - and none has recurred. All were young and all had their ovaries pumped up with hormones in order to make lots of eggs to fertilize with partner/donor sperm before beginning chemo (since chemo can ruin your fertility and often does). Some had many positive lymph nodes. But again, all are doing well, and this is nearly four years later. So, yay!