About three months after my mastectomy I had a scan of my hips and pelvis. I was experiencing some pain and the pain lasted over a week. I called oncology and my doctor said it was “probably just bursitis.” I had maintained a pretty aggressive level of physical activity during and after cancer treatment (not to mention the third pregnancy) it was probable that I had strained a non-skeletal part of myself.

But cancer is a fickle and unpredictable infliction, and for whom it metastasizes is not well understood, so oncology ordered scans.

Of course, “it’s probably nothing,” had been the famous last words of my OB prior to my breast cancer diagnosis. One of the most challenging aspects of surviving cancer is that once you have had cancer, you never really know when one of those little aches or pains is the cancer coming back to close the curtains on your life forever.

By coincidence, in the beginning of Breast Cancer Awareness month, I found myself back at the cancer center to find out if my life would be cut short by breast cancer. The scan was on a Friday (pro tip: don’t schedule scans on Fridays) and by Monday morning I had worked myself up into a complete frenzy. The radiologist called to tell me that my scan was clear. Relieved, I hung up the phone and vomited.

I was warned that October would be hard as a survivor of the disease. I shrugged off the suggestion. I had always loved October. Halloween, cozy slippers, hoodies, scarves, pumpkin pie, and bonfires let the transition between summer and winter land gently. I refused to let this disease ruin yet another aspect of my life. I refuse to let it change me so fundamentally that I no longer enjoy things I have always loved. 

And yet, here I am at the start of my second October since diagnosis, very unsettled. My muscles are stiff from the anxiety rushing through my body and tight from the tension. 

What makes it so hard?

For one thing, it’s a very long month of being bombarded with cheesy-cheery messages about the darkest year of my life. A daily reminder of unresolved trauma and grief for a life that was stolen from me. My old life. 

My heart races and I start to sweat when someone casually asks me to donate “to breast cancer” at a checkout. I try to swallow the lump in my throat and not make a mess with spontaneous word diarrhea all over the counter and the innocent clerk. 

Pinkwashing

Corporate America knows the value of a good public relations campaign. They love to appear charitable. What could be easier than putting a pink ribbon on a product. The appearance of saving women. After all, everyone knows someone who has had breast cancer. They claim that a percentage of profits go to a breast cancer charity. 

But what percentage actually goes to the charity? And what percentage of funds does that charity actually spend on research that goes towards curing breast cancer? The companies dupe consumers into thinking they’re supporting the cure for breast cancer while the profits go towards their bottom line and they simply donate a couple of pink bras. For the entire month of October corporate America profits off of our suffering. 

When I see a pink ribbon and I think of my friends who died this year. My stage four friends who are fighting cancer, fighting the medical system, advocating endlessly to be seen and heard. I love the color pink but sometimes it’s nauseating. Thank you for raising awareness. But we are aware. 

We are breast cancer awareness. We need more. We need better treatments. We need life saving options. We need to know what causes breast cancer (no, muggle, it’s not Diet Coke). 

We need some dignity in this performative act of fundraising. 

If breast cancer could be cured by awareness alone, it would be done. You cannot so much as eat a banana in the month of October without a flashy pink ribbon sticker appearing charitable and demanding attention. 

And yet, death rates for young women diagnosed with breast cancer are increasing even as it has fallen for older women. (Source: Washington Post)  About 44,000 people will die of breast cancer this year. (Breastcancer.org) Folks tend to think that there is a genetic or family link to breast cancer, but 85% of the women who are diagnosed with breast cancer have no family history of breast cancer (Breastcancer.org). With decades of pink campaigns about “awareness” little has changed for survival for those diagnosed with late stage breast cancer. 

It’s also worth noting that one third of all early stage breast cancers recur as stage four after early stage treatment. (Source: FredHutch.org) One third. When cancer recurs and spreads outside the breast it is called metastatic, which means stage four. The average lifespan for someone with stage four breast cancer is 18-24 months. (Metavivor.org) 

The “early detection saves lives” slogan is partially true. It saves some lives, but it does not prevent cancer from recurring. Vigilance is not enough. Early stage treatment is not enough. Going bald from chemotherapy is not enough. Frying one's skin and organs with radioactive beams is not enough. Removing breasts; surrounding tissue, and cauterizing the remaining chest wall is not enough. Cyber knives to the brain are not enough. Breast cancer recurs and people die.

We need a cure. Pink ribbons are swell but I am talking about a for-real cure. How do we get a cure? Research. 

Research

Unfortunately the breast cancer organization sucking up most of the air in every room is Komen. The charity historically did a lot of great work. They put breast cancer front and center on the national agenda. But tragically only 16-20% of all of their donations actually go towards research. (Source: http://curekomen.org ) 

Less than a quarter out of every dollar. The twenty-five dollar shirt you bought where ten percent of the proceeds went to Komen? Fifty cents went to research. Fifty cents towards a cure. Two dollars for other Komen stuff. Twenty two dollars and fifty cents to cost, profit for the clothing company. 

Komen even claims to trademark the phrase “for the cure” and has sued other charities and families over the use of the word “cure.” (Source: Huffington Post and Wall Street Journal) What percentage of your donations are paying the legal fees for them to sue other smaller charities and families who are trying to raise money to cure cancer?

Komen’s webpage claims to support breast cancer patients. Well I had breast cancer. Komen was nowhere to be seen in my life. Ever. Still nothing. I have been asked to donate to Komen more times since my breast cancer diagnosis than I have received one ounce of support. And I was absolutely drowning during treatment. 

Good news! There are other more deserving organizations. Sideline the bloated legacy organization and redirect these dollars to the Breast Cancer Research Foundation, Metavivor , and the Triple Negative Breast Cancer Foundation. There are many other wonderful small cancer charities out there who will give you the best use out of every dollar you donate. 

We are living in an exciting time for cancer research. New discoveries and treatment options are in trial phases. There are more chemotherapy options for TNBC than there were when I was diagnosed not even two years ago. I constantly hold on to the hope that there will be a breakthrough before my friends who have metastatic breast cancer succumb to the disease. 

Breast Cancer, Actually

This October, please think of us. Think of the young mothers who were brushed off by medical professionals. Think of the women in their twenties, on the cusp of life, who are absolutely shocked to get a breast cancer diagnosis at stage four de novo. Think of the women planning their own funerals when they should be planning weddings, preschool concerts, and carpools. Think of the women who were told they were “cured” of early stage breast cancer, only to be diagnosed with a deadly recurrence a decade later. Think of how they head to chemotherapy for the fiftieth time, because they will receive it for the rest of their lives. Think of how they are hospitalized for having fluid drained from their lungs. From around their hearts. Think of how they are sent home to die. 

This is breast cancer. We are breast cancer awareness.