October 30: A Recap of the Month

There are a lot of good blog entries out there about metastatic breast cancer, but by far one of my favorites is What Have We Learned About Metastatic Breast Cancer, Charlie Brown? It's comprehensive and witty, and one line especially stands out to me.

When I was first diagnosed with metastatic breast cancer, I wanted to set the world on fire.

This is where I am right now, trying to set the world on fire with advocacy and awareness. I hope I never lose my passion for speaking out and trying to get more funding for metastatic research. I hope that is my legacy, to set the world on fire.

So what have we learned this month?

30% of early stage breast cancers go on to become metastatic. Even Stage 0 is at risk. Once there is cancer in your body, you are at risk of developing metastasis. And there is no cure for metastatic breast cancer. Only treatments in hopes of prolonging your life. An additional 10% more are already metastatic from the time they're diagnosed. That means 40% of breast cancers are metastatic.

155,000 people in the USA are living with metastatic disease.  The US cancer registry does NOT track breast cancer recurrence so there are no reliable numbers for how many new cases of metastasis get diagnosed each year.

40,000 people die from metastatic breast cancer in the USA annually. This number has not changed over the years. Despite all the early detection and awareness, the mortality rate of breast cancer has remained stable. We are no closer to a cure than we were 40 years ago.

Only 2% of the funding for breast cancer goes to metastatic research. All the rest goes to early detection and awareness programs, and of course, company overheads and CEO pockets. If you want to make a difference with metastatic research, be sure to donate to a company where 100% of the donations go to metastatic breast cancer, like METAvivor.

The average length of survival for people diagnosed with metastatic breast cancer is 3 years.

The primary locations of breast cancer metastasis are: brain, bones, liver, lungs.

Early detection does not guarantee a cure. Metastatic breast cancer can occur 5, 10 or 15 years after a person's original diagnosis and successful treatment.

Women as young as 11 years of age, as well as men, can be diagnosed with metastatic breast cancer. There is no such thing as 'too young' or 'too male'.

Each woman and her prognosis is different. There are more than 18 different sub-types of breast cancer known to doctors, and each of those forms can have variations in things like hormone receptors and genetic factors.

Only 5% of women with breast cancer test positive for the BRCA 1 or 2 gene mutation.

Treatment for metastatic breast cancer is lifelong and focuses on control of the disease and quality of life.

For more information, please read 13 Facts Everyone Should Know About Metastatic Breast Cancer and also the 2013 MBC Fact a Day - 31 Days in October.

Help us out in our fight for research and better treatments. Donate to METAvivor.

Your Singing Mammogram

Last night, I hopped onto Twitter just to check what was going on over there since Facebook was quiet and was boring me, and I caught a tweet made by Lori, the president of METAvivor.

I clicked on the link to see the video, and my jaw dropped. I'm deaf, I couldn't even follow what was being said, and even taking that into account, what I saw was so mind-numbingly offensive that all I could do was make incoherently profane sounds and anatomically-impossible suggestions for the people who thought it up. For your viewing "pleasure", it's below:

And of course, this comes on the heels of me bitching about the sexualization of breast cancer. I've been getting bits and snips of this travesty from other people, trying to formulate a post of my own about this. I seriously can't even with this video. Every line I learn, my brain hops back into incoherent rage mode. But this is what friends are for. Lori made an excellent post of her own, #AllKindsOfWrong, and Sara, the best maid in our wedding party, put together a line-by-line of what's wrong with this video.

Ooooh, wow. Where do I begin? First off, that was the longest, most annoying minute of my life so far today.

Right from the start, it annoys me. The nonsense-syllable intro? "Boobs, ba-boobs, ba-boobs, ta-ta tas, boobs..." Oh, -please-.

"Dudes and babies love 'em,/It's fun to squeeze and hug 'em..." Yes, thank you. Thank you for reducing my worth to a pair of breasts, on legs. Because the rest of me is not huggable at all--just my breasts. Thank you for reminding me that they have two purposes: For Being Groped, and For Feeding Sprogs. Because it's -certainly- not enough to just let them be 'a body part'.

I could be mishearing this one; it's a bit mushy: "Big cups or double-Ds, E and, we love 'em Gs..." Yes, because mammoth boobs are the ONLY ONES THAT MATTER, duh. Anything smaller than a D-cup? Apparently, you do not matter. (Note: the line is actually B-Cups, but the comment still stands. A-Cups are ignored, and oddly, C-Cups are only implied. The less common DD, E, and Gs are sung about because massive boobs.)

"They jiggle in loose tees/And extra-perky in the breeze!" I don't even. Again with the implication that breasts serve no other purpose than to please men, and we are -obligated-, as women, to entertain them with our breasts.

"Depending on the rack,/They sometimes hurt your back." I don't know. I just found this line, sung by a bunch of guys, who will never have to deal with that sort of issue, to be incredibly condescending. Almost along the lines of the "It's all in your head!" sympathy they give when women suffer from PMS: "How could you possibly SUFFER from something as awesome as BREASTS?! You must be imagining it."

Then there's this nonsense mumbled stuff about the pleasure of removing your bra after a long day. Whatever, dudes. It comes off as them chuckling and head-patting...oh, those women and their brassieres...more lady-sorcery we do not understand! BRAS. HOW DO THEY WORK.

"It's important and we're begging you, please.../Take care of those boobies!" If the sentiment was, 'Regular breast exams are a critical component of your preventive care regimen', then, okay. I can accept that. But the entire feel--no, I take that back--TAINT of this video gives the undercurrent of, 'If you get breast cancer, you'll have to get a mastectomy, and THEN what will we ogle and squeeze?! YOU OWE US, LADIES.' And maybe I'm just reading too much into this. But to me, the video -oozes- light-hearted "tee hee, look at us, we're so cute!" There is no 'serious reminder of health issues'. And it comes off as 'it's not THAT serious', too.

"And please don't forget to share this reminder to check your pair." Most women I know would be offended by this, why on earth would I share it?

Ugh. I feel dirty now.

 Another thought I had, after stepping away from that morass of everything tacky and tasteless: it ONLY concerns women who have not been diagnosed with breast cancer.

Maybe that's the whole point, and maybe I'm missing that point, and maybe it's just that, a year ago, I wouldn't have even given it a second thought. But, knowing you, and being here with you as you go through the treatment and the stress and the heartache of dealing with breast cancer? It kind of -cheapens- what you're going through. Turns it into a song-and-dance number, makes it sound like this funny, cool thing ladies should do. Oh, and if you get breast cancer? You horrible harridan, you DID NOT TAKE CARE OF YOUR BOOBIES. HOW. COULD. YOU. WE EVEN SANG AND DANCED ABOUT IT!

To me, Prevention, Treatment and Management should be bosom buddies (no pun intended). One should not be given the spotlight, while the others are overshadowed, because prevention is the fun one! It's the pretty one that isn't sick yet! What's the point of prevention, if no effort is made toward exploring treatment options and efforts to improve the quality of life for people (yes, men and women both) who suffer from breast cancer?

AND THAT'S ANOTHER THING I just thought of. This whole video COMPLETELY excludes the men, completely. It doesn't cover the fact that they're at risk, too, and makes early detection seem like Womany Sorcery Stuff, No Boys Allowed. And that's a crying shame, because what do these poor men do, when they find themselves adrift in a sea of pink, with no lifebuoys left out for them?

Susan G. Komen, you disgust me, in ways I never thought you could.

I couldn't have said it better myself. And in case an example is needed to prove that one doesn't have to resort to offensive, condescending, ninnyhammer claptrap to promote awareness, here's the video from METAvivor.

October 14: Save Second Base (Or: The Tits Are What Matters)

Save the Ta-tas! Save Second Base! Save the jiggly things on a woman's chest that we like to call by cutesy names.

What about saving the women?

This is not going to be a fun post. I'm going to soapbox on another issue that's worthy of an entire blog unto itself: rape culture.

What exactly is rape culture? And yes, before you might protest, it does exist. (Trigger warning for that last link for examples in media) What makes rape culture possible is the cultural norm of objectifying women and turning sex into a punchline.

Why is breast cancer the most marketable illness around? I mean, for fuck's sake, we have pink fracking drill bits (courtesy of SGK, of course. Who else?) Yes, breast cancer kills 40,000 women and men per year in the USA alone, but metastatic disease is hardly touched upon throughout the month of October, much less year-round. The pink ribbon is a cash cow. Why?

Yes, men get breast cancer too, but it's still rare compared to the number of women who get it. Why is the NFL merchandising pink ribbons? (Tune in tomorrow for that fiasco)

Breast cancer is the only disease that affects a publicly acceptable part of a woman's sexual presentation. They're called cutesy names, there's an entire restaurant chain devoted to them (I'm looking at you, Hooters) and the point of it all is to objectify women.

I've heard breast cancer self-exams being joked about as 'groping'. I've heard of it being used as an excuse to grope. "Don't mind me, I'm just checking you for breast cancer!" Grope a tit, save a life. (Never mind the fact that self-exams don't actually save anyone's life; if you've been reading this blog this month, you've learned by now that one out of every three women who find theirs early go on to develop metastatic disease.)

"Save Second Base". Who thought that one up? It turns a deadly disease into a fun punchline.  "Save the Tatas!" Why are we focused on them? What about saving the women? And what about the men who are afflicted with this disease? Their breasts are not considered second base, nor called tatas or coconuts or hooters or any other cutesy tee-hee names.

The reason behind all of this is rape culture. It makes it okay to turn women into sexual objects, which in turn makes breast cancer a fun game all about the tatas. Rape culture makes it okay to sexualize breast cancer.

And that is why it is so marketable. Sex sells, remember? It's no longer about the women. It's all about the tits.

It's the reason an image of a sexy young woman with presumably perky, whole breasts wearing black sexy lingerie made the rounds on Facebook trying to co-opt National Metastatic Breast Cancer Awareness Day (October 13) as No Bra Day. What does going without a bra have to do with breast cancer? Many women who've had mastectomies (as well as those who've undergone reconstruction) can no longer wear bras, at least not "normal" ones. Who does going without bras serve? The patriarchy, objectifying women.

Heterosexual males benefit from it. Not the women with breast cancer. While whole and perky women are jiggling free under their shirts, women who have had mastectomies, with scarred, lumpy, or completely missing breasts, are reminded that society values their breasts more than the person. Many of these women already have self-image issues stemming from the procedures. It is not a "free boob job". A mastectomy and reconstruction involves several surgeries, drains, and a lot of pain as well as a risk for infections and complications. And the reconstructed breasts are still scarred, easily causing pain if bumped or prodded, with little or no sensation that pleasurable to the women. But society expects women to have two bouncy tits or they're not a "real woman". Fortunately, more and more are choosing not to reconstruct, instead going Breast Free.

What a radical thought. But it doesn't have to be that way. Society ties so much of our identity as women to our breasts that the concept of opting out of additional painful surgeries seems groundbreaking and radical and brave. The patriarchy expects women to look like women, even if the reconstructed breast lacks the ability to cause pleasure. It's not about the women. It's about the men.

Yes, I'm aware that some women choose reconstruction for their own personal satisfaction. Had I undergone a mastectomy, I probably would have chosen reconstruction myself. It's not about women choosing to reconstruct, it's about how they're expected to, and going flat is seen as daring and brave. It's not, they're making a choice that's right for them, just as those who choose to reconstruct are making the choice that's right for them as well. Society expects us to have two perky tits, and that pressures a lot of women into undergoing the pain and stress of reconstruction when they might otherwise choose to go without it.

It's an ugly post on an ugly topic. Women are expected to be bright and happy For the Cure robots of Hope and if there's anything we don't like about it, we're expected to shut up and be thankful anyway. Sound familiar? Lay back and take it. Close your eyes and think of England. Catcalls on the street? Stop being so sensitive, it's a compliment, learn to take it like one. All this attention should be accepted with a smile.

This hurts women, and it hurts men too. This is why male-oriented cancers don't get enough attention. This is why other cancers and diseases don't get the same amount of coverage as breast cancer. They're not perky, bouncy, fun sex objects. They can't be marketed in a lighthearted manner. Not the way we do with breast cancer.

That's the end result of it. Breast cancer has become a punchline, the deaths of 40,000 Americans annually pinkwashed over with marketing campaigns which do nothing but line pockets. It's a big business, and sex sells.

I'm not proposing we find ways to sexualize testicular or prostate cancer, but instead, how about we stop using it to sell breast cancer? It's not a cute disease of tee-hee body parts to be called by nudge-wink nicknames. It's killing people. Men and women alike. And we are no closer to a cure than we were decades ago.

Forget about the damn tatas. Save the people instead.

October 4: Did You Know...

Did You Know...

...metastatic breast cancer is the leading killer of women aged 35 through 55? The recommended age for breast cancer screening is 40. This means that women are developing, being diagnosed with, and are dying from breast cancer long before the medical field says they need to be worrying about it.

They do recommend to start screening earlier if you're from a family with a high risk for breast cancer. But that's only a small percentage of them. What about the rest of us, who have no known history of breast cancer in the family? And yet we develop the disease before the age of 40?

I'd say that breast cancer screenings need to start earlier, except mammograms are not as accurate on younger women due to the density of the breast tissue. Not all forms of breast cancer result in a lump, and in younger women, oftentimes by the time the lump is able to be detected, it's already advanced.

We have a test for gene markers that can tell us if we're more or less likely to develop breast cancer. Angelina Jolie put this on the forefront of the news. The BRCA 1 and 2 gene mutation, if present, results in a far higher risk of developing breast and ovarian cancer.

There's a few problems with that, though. For one, the tests can be expensive, and if your insurance won't cover them, the price tag is high enough to keep most women from being able to afford them. There are different types of BRCA testing, ranging in cost from $475 to about $4,000. When you're already paying for cancer treatment and numerous doctor visits, it's hard to find that level of spare change.

Only 5% of breast cancers are due to the BRCA 1 or BRCA 2 gene mutation. That means 95% of the breast cancers out there were not caused by any known genetic factor. I will stress the word 'known'. There's a lot of research that still needs to be done to identify genetic factors for breast cancer, and to make these tests more accessible to the average woman.

My own test results came back negative. I have only one known relation with a history of breast cancer, my great-grandmother on my mother's father's side. I had no reason to start screening earlier, or to suspect that a lump, itchy and painful like a cyst I had before, was anything less than another cyst.

We don't know enough about breast cancer. We pour all these resources into early detection programs and mammogram screenings, and not enough into research for a cause, research for viable, working treatments that can lead to a Stage IV patient being declared No Evidence of Disease. Why are so many women get breast cancer at earlier ages without any warning? Why do we not know this yet? More funding needs to go to research, so more gene markers can be discovered.

With all the awareness, Breast Cancer is still the leading killer of women between the ages of thirty-five and fifty-five. That is unacceptable.

October 3: Too Young or Too Male?

This post doesn't explictly focus on metastatic disease, but instead highlights a disturbing reality of breast cancer. It's not just for women after menopause anymore.

With an increasing frequency, young women are being diagnosed with breast cancer. And in younger women, it's usually more aggressive, more likely to become advanced.

Girls who should be focused on prom and graduation from high school are getting diagnosed. Even tweens are getting diagnosed. While young women with breast cancer are still the minority compared to the older end of the spectrum, they exist. And it can occur at a shockingly young age.

Mammograms start at age 40 because they're not effective for screening for breast cancer in younger women. The breast tissue is too dense for a clear reading. By the time breast cancer is detected in young women (a lump for ductal carcinoma, a thickening of the tissue and/or lumps for lobular carcinoma, red irritated inflammation of the skin for inflammatory breast cancer) it is usually advanced. Lymph nodes swell and tests are run, and by that time it's already beginning to circulate through the body, increasing the risk of metastasis.

In my own case, I'd had cysts before which opened and drained on their own. When I felt the lump, it was painful and itchy at the time, and in the beginning, I couldn't always find it. It seemed to come and go around my menstrual cycle, and as I said, it hurt and itched. There were no other warning signs in the breast, no dimpling or changes besides the lump, and symptom-wise, it pointed to a cyst. I was under 40, and there was little concern even from medical professionals that it was anything more than a cyst. It was only when I finally went in to have it drained that a biopsy ended up being ordered and confirmed it was actually breast cancer. By that point, it was advanced and had spread to my liver.

If you have breast tissue, you can get breast cancer regardless of your age, or even your gender. Men are getting diagnosed with breast cancer too, and because it's so often promoted as a female disease, they don't realize it, and by the time they're diagnosed, they're often already at Stage III or IV.

The worst part is, because breast cancer is so often viewed as a woman's disease, men with breast cancer can face ridicule and mockery, shaming them into silence. Even if they suspect they have breast cancer, this shame can prevent them from seeking medical help until it's far too late. And there are not enough men who have been diagnosed in order for there to be a proper protocol for treating men.

Anyone remember the Secret antiperspirant commercials and their slogan? "Strong enough for a man, pH balanced for a woman"?  Men and women are different on so many levels, and the treatments for breast cancer that are effective on females don't always work as well on men. There is so little known that they lack decent treatment options.

The pink ribbon has done a great deal for spreading awareness, but unfortunately it has done so at the expense of far too many.

Men.

Children.

Metastatic disease.

The pink ribbon doesn't cover those, doesn't acknowledge it. We might make up a rarer percentage, but we are still a percentage that exists, and that needs to be known.

October Is Not A Time For Games

I like it on the table. I like it on the couch. I'm going to Germany for five months. Mine is blue! Mine is white! Mine has the pink ribbons! Blueberry! Pineapple! Avocado! Shh! Don't tell the men, it's just for the ladies! Post this as your status and show your support for breast cancer! Where do you keep your purse? What month is your birthday? What color is your bra? What's your relationship status?

Why do we even need a bra, ladies? Go without for a day to show support for breast cancer!

It's that time of the year again when stupid games dominate the Facebook landscape. They make no sense, and have no connection to breast cancer, they do nothing to actually raise awareness, let alone the far-more-needed funding. They exclude men, who can and do die from breast cancer.

The worst part is that some of these games are co-opting October 13 for their participation day. October 13 is the National Metastatic Breast Cancer Awareness Day, and these games aren't even relevant to any stage of breast cancer. How does going without a bra support the thousands of women who struggle with chemo and radiation and surgery and chemical menopause and metastasis? It doesn't.

It's Slactivism at its finest. Posting a random fruit as your status doesn't spread breast cancer awareness. Excluding men as part of your little inboxer games doesn't spread breast cancer awareness. Playing a game in secrecy certainly doesn't spread any sort of awareness. And it does nothing to help.

We have enough awareness of breast cancer itself. What we don't have is awareness of Metastatic Breast Cancer and what it really is. There's no cure. Breast cancer is not the "easy cancer". There is no cure. Thirty percent of women who detect theirs in an early stage go on to develop metastatic disease. An additional ten percent are metastatic from the time they're diagnosed.

When I was diagnosed, I thought it just meant I had to fight harder. It's just breast cancer, after all. Isn't that what we learn in October? Hope and a Cure? It's all about fighting, being a survivor, it's a beatable disease. I've had MBC for less than a year and I've lost count of how many women in groups I participate in have died from breast cancer. Not from treatment, not from something else, but from breast cancer that has metastasized beyond the breast. It goes to the bones. It goes to the brain. It goes to the lungs and liver, and those are just the most common four places.

One woman I knew, she welcomed me to a board when I'd joined, she was beautiful, inside and out. She was only thirty years old. She died several months ago from breast cancer. It's not a game. It's not a fruit. It's not a tee-hee status to keep the men guessing.  It's a beast, a monster, and it's very, very real.

We get less than five percent of the funding for research for metastatic breast cancer. The rest goes to early awareness programs, and of course, the ever-important CEO bankrolls. There's no profit in the dying, even though the entire sea of pink is built on the backs of the dead. There's no hope in metastatic breast cancer, and it's not profitable. There's no cure, but that's the secret they can't afford to let out. There's no cure for the early stage breast cancers either. Thirty percent go on to develop metastasis, no matter what.

They can't afford to let that become known. They're all about Hope and Cure, and where would they be if people found out that neither existed? That no one ever talks about the 40,000 deaths each year in the United States due to metastatic breast cancer, that it includes both men and women, and women under 40? What would people do if they knew that the death rate hasn't changed a bit, even with all the years of early detection programs? Nothing has really changed. Breast Cancer is still the killer it has always been, and all we can do is delay it for a while. There's no hope, and no cure. Not without funding for research. There's research out there that shows brilliant promise, but we need funding.

Metavivor.org and MBCN.org are two organizations that funnel donations to research specifically for metastatic breast cancer. 

The lives of women and men with breast cancer are not something for you to play a game with, we are not cutesy or naughty Facebook statuses, and we will not let you co-opt the one day of the entire pink month of October we have worked so very hard to get.

Advocacy

The final stage, it lies forgotten,
Drowned out in a world made of pink.
Breast cancer is cured, they say,
And it applies to even us, they think.

This is not true, the fight and hope,
We fight among the best.
But the cancer has its foothold
Far beyond our breast.

It matters not the gender
Or the age of who is claimed.
Religion, race, creed, or country,
It takes us all the same.

We see a finer beauty left to live
And, too, we keenly feel
The loss of moments now denied-
A reality too real.

To honor our fallen brethren,
We must raise a hue and cry,
And bring awareness for the Fourth
Before our own time comes to die.

Metastatic cancer is oft ignored
In favor of those who survive.
We beg researchers to forget us not,
For we too are still alive.

The ones who found theirs early,
Metastasis strikes even they.
Thirty percent cannot run nor hide,
And struggle to keep it at bay.

Ten percent more are metastatic
From the time they're initially seen.
For them, the hope of cancer-free
Has died before they can dream.

Of all the funding raised in the pink
A mere two percent goes toward mets.
The rest goes to CEOs and overheads,
And programs for early detect.

Thirty percent for the thirty
Is all that we ask, nothing more.
It's time to acknowledge metastatic disease
And to stop ignoring Stage IV.

The Elephant in the Breast Cancer Room

Not so much an elephant anymore, because a lot of people are coming to realize just how hard Komen sucks. But not enough people realize that yet. It's still picking up steam.

First, they yoinked support from Planned Parenthood, which provides a full range of health care for women, including those below poverty level. Some PP clinics were even able to offer these services for free to women who couldn't otherwise afford them. These services included life-sparing early detection procedures for cancer.

They also have a history of suing anyone and anything they suspect might be infringing on their "copyright". They're not raising awareness for breast cancer and funding research. They're running a pinkwashing business and raking it in at the cost of lives.

Now, they're stealing someone else's campaign, and pinkwashing it into another cutesy movement, and throwing the lives of those who are dying under the bus in the process.

In 2012, METAvivor started The Elephant in the Pink Room campaign, to combat the pinkwashing and bring awareness and attention to the 30% of us with Metastatic Breast Cancer.

Now Komen has teamed up with Kohl's to bring us the Pink Elephant campaign. Because we apparently don't talk about Breast Cancer enough. Apparently we don't have enough Awareness. We need to Talk About Breast Cancer. And in the process, let's overlook those 30% of women while stealing their campaign because dying is, you know, just so depressing.

There's been other blog entries, a lot of them, about this travesty, and I cannot recommend strongly enough that you go read them.

Komen and Kohl's had a social network hashtag for this campaign: #TalkPink. The #bcsm on Twitter is doing their own Occupy Hashtag, dragging it into the metastasis mud and bringing awareness while keeping the spotlight on the douchebaggery of these two businesses.

Keep getting the word out. Boycott Kohl's until they drop the campaign. Defund Komen and run them out of town.

And support METAvivor, which has issued an awesome rebuttal letter to Kohl's over this incident.