The Good, The Bad, and The Pink

Pinktober. I’ve heard other survivors speak with mixed feelings about Breast Cancer Awareness Month, and now I get it. It’s a bit overwhelming. My cancer experience has been one filled with many strong emotions, and all of a sudden there are symbols of that experience EVERYWHERE. In store windows, all over Facebook, even on cement trucks. It is both appreciated and sometimes too much.

And it seems like everyone wants to make a buck by slapping a pink ribbon on their products! If you are trying to support breast cancer programs, make sure any pink ribbon items you buy are actually generating donations to organizations that help in some way: education, funding mammograms, breast cancer research, or patient support.

A lot of Breast Cancer Awareness Month messaging surrounds the importance of regular mammograms. These are indeed a good thing, but there is more to the story. My hope this month is to spread awareness about some of the other issues related to breast cancer that you don’t hear as much about.

Mammograms don’t catch everything.
I had a routine mammogram shortly before my diagnosis, and it didn’t catch anything. Dense or heterogeneously dense breast tissue makes it much harder for the radiologist to distinguish suspicious masses from surrounding tissue. But my left breast had changed slightly in size and shape, and it kept nagging at me. I mentioned this to my doctor, who ordered an ultrasound and diagnostic mammogram (more in-depth than a routine mammogram)—that’s where the tumors finally became visible. It is important to know the limits of routine mammography and mention ANYTHING you notice to your doctor.

Certain people are left out.

• The campaign for mammograms targets cisgender^* women—that’s who you always see in the ads. This makes sense in some respects, because that is the group with clear screening recommendations from medical organizations. However, cisgender men, and trans and non-binary folks can and do develop breast cancer. Routine screening mammograms are generally not recommended for cisgender men (yes, men can get mammograms!), and trans and non-binary folks often face conflicting recommendations and lack of knowledge by medical providers. There is a huge need for professional education in these areas. This just brings us back to my previous point—know your risk, and mention ANYTHING you notice to your doctor.
  *Cisgender means your gender matches the sex assigned to you at birth.
• Awareness does not equal access. Healthcare inequity leaves people without access to timely screenings or adequate care after diagnosis. LGBTQ+ people and communities of color are disproportionately affected.
• Sometimes early detection is not enough, and cancer has spread to other parts of the body. Pinktober campaigns tend to ignore those with metastatic breast cancer, whose treatments are intended not to cure cancer but to keep it at bay. More research is needed into treatments and palliative care for patients with metastatic cancer. 

Even if you catch it early, there will be long term effects. 
Even when caught at an early stage, breast cancer often results in surgery. Those surgeries result in varying degrees of scarring and change in appearance. There is NO shame in that! Some of us carry these scars with a quiet dignity, having gained a new view of what matters. Some of us carry them as battle scars, a reminder that we are strong, regardless of our prognosis. Some of us carry them as a harsh reminder. Many of us have a mix of emotions, as unique as we are. Then there’s the damage caused by the treatments themselves, some of which will resolve over time and some will not. Liver and heart damage from the chemo. Damage to nearby organs that radiation must past through, like the lungs and esophagus. Lymphedema if lymph nodes were removed. Estrogen blockers protect some from a breast cancer recurrence but increase the risk of ovarian or endometrial cancer.

When I wear my pink ribbons, they stand for awareness of all these things and more. This is just a brief introduction. My hope is that we can move beyond awareness to progress and equity in all facets of breast cancer education, prevention, diagnosis, treatment, palliative care, and emotional support.