"No One Told [Me] The Truth...'A Couple Years Later, You're Going To Die'"

Photographed by Sara Dixon.
When Champagne Joy was diagnosed with breast cancer six years ago, she went through all the things you do when you get breast cancer — chemo, surgery, baldness, radiation. “We did the public version of what you think breast cancer looks like," she explains, complete with the pink ribbons and the "I Will Survive" soundtrack.

“But no one told [me] the truth, which is, 'A couple of years later, you’re going to die.'”

Four years after her initial diagnosis — including two years in remission — Joy's breast cancer returned with a vengeance, spreading to other parts of her body. This is known as stage 4, or metastatic breast cancer, which, even after decades of advocacy and billions of dollars raised for breast cancer on the whole, remains a death sentence. It’s estimated that over 40,000 women die every year due to breast cancer (about 108 per day) and virtually all of them are stage 4.

Because of the many years of progress in treating early stage breast cancer (nowadays, 93% of women diagnosed with with stage 2 breast cancer are expected to live at least five years), most people don't realize that an estimated 30% of all women diagnosed with breast cancer will go on to develop an advanced, incurable disease.

But no one told [me] the truth, which is, 'A couple of years later, you’re going to die.'

Champagne Joy
Or maybe we just don't want to know, Joy wonders. The story the world likes to hear every October is the one about survival and pink warriors, boldly (and yes, baldly) charging forth in their celebratory 5Ks. The strides we have made in breast cancer no doubt deserve celebration and every person affected by this disease has a right to their story. But for many metastatic breast cancer patients, this narrative is alienating — even hurtful and insulting at times — because for them, there is no end of breast cancer in sight. The median survival rate for stage 4 patients is just three years, a number that hasn't changed meaningfully in decades.

So today, Joy spends what will almost certainly be her final days working to make sure everyone knows this fact: As little as 2% of research dollars spent on breast cancer on the whole goes to figuring out how to help metastatic breast cancer patients survive their disease.

As the founder of #Cancerland, she helps other patients (and those who care for them) to navigate the difficult and often devastating diagnosis and treatment processes. It started as a hashtag and online community for women with metastatic breast cancer to find each other, talk openly about their specific set of challenges, and harness each of their own networks to support one another. For example, if someone needs their house cleaned or their kids watched during treatment, or she needs advice about a treatment protocol, ask #Cancerland. Now, it's all that and more: a documentary series, advocacy group, and fundraising organization, all for people with advanced breast cancer.

This October, Refinery29 is partnering with #Cancerland to dive deep into this issue through a series of articles, videos, and live coverage. We will be telling the stories of women affected by breast cancer — especially metastatic breast cancer — without any "pinkwashing." And we're starting with Joy.

So it's officially October now, what do you want people to know about breast cancer?
"There is a misportrayal of the overall disease. My original diagnosis meant that I should have been fine. Most women who have a lower-stage cancer have no idea that they're at risk for metastatic breast cancer, which has [very little] research going towards it and no cure. It is certain death. This is the stuff that doesn’t get talked about.

"There's a public lack of awareness. They think of breast cancer as done: 'We gave. There were pink ribbons and we gave and we're done. That's a curable disease. It's over.' So I find it amazing and shocking every day that the resources aren't there to actually do something about this, except for people who are out there who say, 'No, we're not gonna go quietly.'
"We are also led to believe that [treatment] is supposed to be an end-to-end experience. But it's not, because even if you’re in that two-thirds of people and you survive your treatment and you never get cancer back, the ravages of this are insanely deep.

"If a woman has an estrogen-driven cancer, [for example], the first thing they’ll want to do is a double mastectomy and a hysterectomy. That causes fallout. There is a price to be paid. Even if you never get your cancer back, you’re going to have brittle bones. You’ll go through menopause. You may have lymphedema [a painful swelling in your arm or leg caused by the removal of your lymph nodes], and you end up managing this condition for the rest of your life."
Is this why you started #Cancerland?
"Yes, but we're not just about freaking you out. I started a hashtag called #Cancerland, which was kind of like The A-Team: if you could find us, we'll help you. We clean people's houses when they're at treatment and then we shout from the rooftops about making change in the disease. We try to improve the quality of living of women who are going through breast cancer and we don't believe anyone should go through it alone.

"We also developed the #loveattack hashtag as a way to come in, tell you everything you need, throw you a party, make you feel beautiful, and just assure you that you're not alone. And when you get well enough, you'll have to come work with us.

It's about people knowing the realities and they’re not all pretty — [at least 100 people] die every day in this country from metastatic breast cancer. And they'll do it again tomorrow.

Champagne Joy
"When you're diagnosed, you’ve got a week to do a lot of stuff and you’re not gonna hear from your doctor. Number one: go freeze your eggs. I don’t care if you never wanted children. Number two: go shave your head. Go buy hats and wigs and do it NOW, while you feel good. Make a plan of who’s going to help you and where there are gaps. Who’s watching your kids? Have you spoken to your job yet? Consolidate your debt. There’s a lot to manage. In the course of a normal woman’s life, you’re managing a lot of things and you’re not going to be at the top of your game for a good year.

"Women have been told that they’re not supposed to take any downtime. You have to find a way to be vulnerable. I like to tell people you’re not totally human until you’re totally dependent on other human beings."

You have been very open about the fact that you're on limited time. Why are you devoting your last days to this and what keeps you going?
"[My friends and my husband] make me able to function and I cannot imagine doing this alone. I am committed to people not having to do it alone. There are many, many moments every single day where it is so hard to just choose to stay alive. I cannot stress that enough — moment-to-moment, you’re like, 'I can’t do this, I am too sick, I have been too sick for too long, I have been too beaten down, I am too tired, and it would just be easier to let go.' What stops you is your people. That means different things to each person.

"For me, personally, I won't leave this Earth till I see the beginning of change. I won't see the end of change, but I need to see that beginning or my life meant nothing."

What should we be doing to change the conversation?
"First of all, we need to raise research money and to actually develop a top-down cure; a cure for breast cancer that could then be applied to everyone who has breast cancer, not just the lower-staged people. There's really only one organization in this country [focused solely on metastatic research], it's called Metavivor and it's run by women with metastatic breast cancer.

"For every woman who's diagnosed with breast cancer, she needs someone from #Cancerland handy, or #Cancerland needs to be bigger, or other facilities need to adapt our approach.

"And [finally, we need a different kind of awareness.] True awareness leads to research, which leads to cure, which leads to life. People often believe, because of the pink ribbons, that breast cancer has been dealt with. They say, 'Didn’t we do that already?' It's about people knowing the realities and they’re not all pretty — [at least 100 people] die every day in this country from metastatic breast cancer. And they'll do it again tomorrow. And they’ve been doing it for 40 years without a change in that number. That tells us we’re not getting any closer to finding any form of cure."

This interview has been edited and condensed for clarity.

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