It’s October again. I know this not from the calendar, or by the pumpkins. I had not yet noticed the leaves beginning change, or the days ending earlier. But I know with certainty that it is October because I am a breast cancer survivor, and everywhere I look, everything, it seems, is pink.

October, as just about everyone knows, is National Breast Cancer Awareness Month, which is to say that it is the month that every retailer and manufacturer and sports franchise imaginable will put forth a pink version of themselves which is designed to sell things by making everyone more “aware” of breast cancer. And anyone who has paid even the slightest attention to the messaging of Octobers of the past, knows that awareness leads to early detection which leads to cure, for everybody diagnosed with breast cancer. Right?

Not exactly.

Some breast cancers, even if they are discovered early, will become metastatic, or stage IV, breast cancer, a disease which cannot currently be cured. The exact process that causes some cancers to do this, while others do not, is still not entirely clear. But it is a reality that is often misunderstood, or just left out, of all we’ve been made so pinkfully “aware” in Octobers.

It is still true that mammography screening is the very best tool for early detection and that, generally speaking, breast cancers detected at earlier stages are more likely to be cured[i]. This I know first-hand: I was diagnosed, at my first mammogram at 40, when I was living with four small children I knew about and a hidden, aggressive cancer in my right breast that I did not. My tumor was not any kind of “good kind”, but still, it was small enough and contained enough to provide me with decent odds. I was given survival percentages that would not earn me an A in school, but maybe a solid B+, provided I completed included a year of treatment which including surgery and reconstruction, chemotherapy, and targeted therapy. Even then, there were no guarantees. Still, if I hadn’t followed doctor’s orders to get that first recommended mammogram at 40, things surely would have gone differently, and it is safe to say that early detection saved my life.

But, as any survivor will tell you, the pink ribbon does not tell the whole story of breast cancer survivorship; it is more complicated than the pink part of the story, or that the pinkwashing of October suggests. As a nation, we are more aware now, to be sure; the Octobers of years past have, in large part, been a success, have done their job. But there is still work to be done to eliminate the myths that still exist: the outdated belief that the surgeon “getting it all” is curative, the more recent notion that being positive is essential. The idea that breast cancer survivors somehow enjoy, rather than endure, the 31-day blitz of constant reminders of their struggle. The assumption that if you are alive, and especially if you still have your hair, you must surely have “beaten it”.

The truth is that few of us who have walked this road, our hearts broken and our ears rung by the profanity of hearing the first C word, which was Cancer, ever got to hear the C word we longed to hear our doctors say, which was Cured. Some of us, purely by the luck of the draw, got to hear some D words, like Done with treatment, and maybe even Discharged from our oncologist’s care, and when this happens, it fits the narrative of National Breast Cancer Awareness Month; it makes everyone feel good. Even then, there is no representation, on pink stand mixer displays and on pink-ballooned car lots for the losses and the fears we live with forever, the intense and post-traumatic uncertainty, the tentative and hopeful gratitude of “wait and see” and “probably-cured”.

And what of our Stage IV sisters, who find themselves, having done everything right, and gotten the mammogram, and followed doctor’s orders, and hoped in and believed in a cure, and who now do their level best to live as fully as they possibly can, despite breast cancer that has spread in their bodies, despite the fact that there will be no cure. Where are they represented in the pink merchandise, in the cure-based messaging?

It’s time to include everyone, to enter, and to include, a new stage in breast cancer awareness.

The CDC estimates that there are more than 150,000 women living with Metastatic Breast Cancer (MBC), also known as Stage IV Breast Cancer, in the US today[ii]. Three out of 4 women living with MBC were initially diagnosed with an earlier stage of breast cancer[iii]. It’s time to make National Breast Cancer Awareness Month a time to talk about MBC, increasing awareness of what it is and how and why it happens, so we can all better support survivors in a full-color spectrum that extends beyond the pink.

#52for52 (19/52)

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Breast Cancer can be a fugitive. In the treatment of early stage breast cancer, local therapy like surgery and radiation are done to remove the tumor cells from the breast. Sometimes, breast cancer cells have already fled the breast, traveling through the lymph nodes or bloodstream looking to set up their nefarious business someplace else (most often bones, lungs, liver, or brain). We don’t yet have an ankle-bracelet system so that we know where they are, and what they’re up to, before they cause a problem. This is why surgery is most often followed by systemic therapy, such as hormone therapy or chemotherapy; it’s like a sweep, picking up any bad guys who may be passing through.

 Breast Cancer can be a squatter. When breast cancer returns or shows up in another place following diagnosis and treatment for early stage disease, it is because those cells have actually been there, quiet, the whole time. This is why breast cancer doctors avoid proclaiming their patients “cured”, why even early-stage survivors often struggle to shake fear of recurrence, and why five years breast-cancer-free increases the likelihood of cure but is not a guarantee. Aggressive, fast-growing cancers can’t go too long in their new home without causing some kind of trouble, and tend to show up within 3-5 years. More slow-growing, less aggressive cancers can lay low, under the radar for longer periods of time, even as long as 10 or 20 years.

The role of preventative double mastectomy. Unless there is a known genetic mutation (such as the BRCA1 or BRCA2 gene), choosing to have both breasts removed has not been shown to increase a woman’s chance of being cured or prolong survival[iv]. This choice has recently gained popularity, particularly in women who have been diagnosed a young age and want to remove their breast tissue to decrease the chance of getting another breast cancer over the course of their lives. Surgical choice has no effect on cells which may have already escaped the breast; whole-body treatment such as hormone therapy or chemotherapy are used to treat any cells which may have traveled elsewhere in the body.

Treatable, but not curable. Once breast cancer has been diagnosed outside of the breast, it is no longer curable. Now more than ever, there are often many different types of treatments available, and current clinical trials promise many new treatments and hope for the future. Today, MBC patients can live with their disease for a long time, in a way that is not exactly the same but is often compared to living with a chronic illness.

Hair: raising questions. Just because a woman has kept her hair does not mean that her cancer is cured, that her cancer hasn’t spread, or that she is not still in treatment. Increasingly, breast cancer treatments are tailored to the specific characteristics of the tumor, and many powerful and effective treatments, such as hormone therapies and targeted therapies, do not cause hair loss. Hair loss is not a good indicator of stage or extent of disease or response to treatment.

Treatment will never be over. MBC patients will remain in treatment for the remainder of their lives. Most often, the cancer continues to shape-shift and adapt around treatment, and over time, treatments which have been effective may become ineffective, requiring the patient and her provider to make changes in types of treatment.

How to help: New treatments. Flashy news headlines and social media posts about miraculous-sounding treatments often include findings still in the laboratory, trials lacking scientific rigor, or results not proven in randomized clinical trials, the gold standard of medical research. Instead of sending new ideas which may add to her anxiety, support her by checking in before her appointment or scan to let her know you’re thinking of her; ask her about how she’s feeling with the new treatment as compared to the last one. Remember that she will never be finished with treatment. Let her know that you her in making decisions with her family and her provider are making together, and respect her privacy if she doesn’t want to share the details.

How to help: Words matter. “Battle” language doesn’t resonate with everyone, and while “fighting” might empower one woman to get through ongoing treatment, another might prefer a more peaceful paradigm. Many women with MBC don’t identify with or feel included in the “survivor” label, while others openly celebrate survivorship with metastatic breast cancer. Even the ubiquitous pink and talk of “cure” can be painful reminders for women living with a treatable but incurable disease. Find out what imagery, language, and approach works for her, so you can support her in a way that is comfortable and meaningful for her.

How to help: When she’s hurting. She may be social and herself one day and withdrawn and unresponsive another. Living with MBC can feel like a constantly changing roller coaster of physical symptoms and emotional resilience. Be as steadfast in friendship as you can, and check in occasionally with cards or calls to let her know you’re thinking of her, without needing or expecting a response.

How to help: Be specific. Make your offers of help specific: ask if she needs milk and bread when you are at the store, offer to pick up her child up on your way to school or the class party. Let her know that you’re down for the big stuff, like listening to her concerns and being there for the ugly cry, or the little stuff, like chatting about normal things without mention of the cancer. Channel a bit of her courage and just be with her, listening carefully to what she is saying, really hearing where she is on that day, asking her gently what she needs most from you. And when you don’t know what to say, just be with her to bear witness, understanding that sometimes, there are no words.

[i] https://www.cancer.gov/types/breast/mammograms-fact-sheet

[ii] https://www.cancer.gov/news-events/press-releases/2017/metastatic-breast-cancer-survival-rates

[iii] https://www.cancer.gov/news-events/press-releases/2017/metastatic-breast-cancer-survival-rates

[iv] https://www.cancer.gov/types/breast/risk-reducing-surgery-fact-sheet