Metastatic breast cancer (mBC) means that cancer has spread from the original tumor site (in this case the breast) to distant locations of the body. Before my cancer was even detected, it had spread from my breast to other organs, my liver, my reproductive system, and every single bone in my body. Breast cancer can be stealthy like that.

There’s no way to know why metastasis happens in some people and not others. And there’s no way to predict if or when it will happen. While there are lifestyle changes you can make to improve your health, you can still develop cancer and become metastatic.

There are more drugs available now than ever before. Yet, there aren’t nearly enough. When you begin treatment, you’ll be closely monitored to see if the therapy is working. If cancer has responded by shrinking or remaining stable, that line of therapy is considered successful and you’ll continue treatment. If there’s been a progression, it’s time for a new strategy.

Get a second opinion. Most Americans live within 100 miles of a major medical center. Get a second set of eyes on your case. Any good doctor will welcome a second opinion and work closely with the other oncologist to create a treatment plan for you. I see an internationally renowned MD-PhD at a well-known university hospital. Yet, I receive my infusions at a local cancer center where I’ve developed an endearing relationship with my local oncologist.

Don’t let other people direct your healthcare. Remember, mBC means treatment and monitoring for life, so be savvy in building your team and advocate for the best healthcare possible.

Not all mBC treatments cause hair loss, and many people with mBC look perfectly healthy. Because we’re in treatment for the rest of our life, our dosages are milder than people with early stage breast cancer. This is so we can stay on the drugs longer without our bodies failing due to side effects.

Collateral damage is a term used to describe the things affected by cancer treatment. For instance:

  • hair loss
  • weight loss
  • bone loss
  • tooth loss
  • loss of mobility
  • fatigue
  • joint pain
  • muscle pain
  • anxiety and depression
  • diminished cognitive function

This collateral damage is cumulative. The longer you’re on treatment, the more side effects build up. Often times, being on treatment means having to decide between life and quality of life.

Scans are another component of mBC treatment. I wish people knew how draining it is to get a scan, lying on the table and thinking of what they might find. Waiting hours or even weeks for the results. The waiting feels endless and cruel.

Clinical trials are also an important treatment option for people with mBC. Not only are more people needed to volunteer as patients, but also healthcare providers to suggest and facilitate enrollment. What doctors don’t tell you is that if you’re too heavily pretreated you may not qualify for a trial. Consider a trial as an early option and not a last resort.

Managing your mental health can be a real challenge when living with mBC. It’s beyond tiring to face your mortality day after day. Even when mBC is well controlled, the diagnosis is still looming. We grieve in our own way for the lives we thought we’d have while learning to navigate our new normal. My recommendation is for anyone with an mBC diagnosis to see a mental health professional.

The mBC community receives the least amount of support and resources, although recently there’s been a moderate improvement. Some of us are actually asked to leave early stage support groups because we scare other participants.

MBC still receives the least amount of breast cancer research dollars across the board, nationally and internationally. As pitifully underfunded as we are, we still receive more research dollars than any other metastatic cancer research fund.

In closing, I want you to know that very few people die from a lump in their breast. People die when cancer is metastatic. I’d never minimize what someone with early stage breast cancer endures — it’s devastating to face any cancer diagnosis.

The metastatic population is the sickest of the sick. Those with breast cancer are dying at a rate of 42,000 a year in the United States alone — and metastatic breast cancer cases are the majority of that number.

We’re the most underrepresented and underfunded of all the breast communities, and we are worthy of so much more.

Beth Fairchild is a mother, artist, and yogi living with metastatic breast cancer (mBC). Beth’s diagnosis in 2014 came as a surprise. She had never experienced a palpable lump in her breast and had a clear mammogram one week prior. Following her diagnosis, Beth was surprised to learn that the metastatic population was particularly underrepresented and that mBC research was underfunded. She started a virtual protest that turned into a social media movement to raise awareness for mBC using the hashtag #DontIgnoreStageIV, which connected her to METAvivor, where she currently serves as the Director of #Cancerland. Beth works as a professional tattoo artist and specializes in permanent cosmetics and areola complex tattooing for women and men who have experienced breast surgery. Beth enjoys the outdoors, gardening, crocheting, traveling with her husband David, and spending time with her new grandson, as well as her children and pets.