When It's Not ''Just'' Hair: How Hair Loss Looks Different with Advanced Cancer

"It's just hair."
"You have a nicely shaped head."
"It will grow back!"

We have heard these things and more, right? What a lot of people fail to comprehend is that, as a stage IV patient living with advanced breast cancer, when you lose your hair, it may not grow back. At least not to what it is. What it could be. Let me explain.

Early vs. late stage breast cancer

As a stage II patient, I knew I was losing my hair. I also knew when my chemotherapy was ending. For me, it was August 3, 2017. And so, I marked the days off on my calendar. I sought out other people's "hair growth timelines" to see what to expect with my own hair growth. Being very eager, I even went so far as to schedule my hair appointment for months later, in November. I had planned a purple pixie cut! Even though I lost my hair, I knew it would come back, and when. It made the loss sting a lot less. Because I knew it was temporary.

When you are a stage IV patient, it's different. This time, my chemotherapy is not ending. It causes hair loss and has no end date. One day, when it stops working, I know the next two chemotherapies I am expected to take will cause hair loss, too.

So when, exactly, will my hair ever grow back? Not just grow back in dribs and drabs, here and there. I mean, really, and truly grow back?

Probably never.

And no, it it's not just hair.

Losing another part of yourself

Chronic hair loss is:

• Seeing a chemotherapy patient staring back at you in the mirror. Every day. For the rest of your life.
• Having people treat you differently-like you are a sick person.
• Crying randomly when you walk past the shampoo aisle or a hair salon.
• Missing the feeling of playing with your hair. Combing it. Styling it. Feeling the wind blow through it.
• Instinctively putting your hands up in the shower to wash it, and remembering it's gone.

It is not just hair. It is losing another part of yourself. Another sense of your autonomy.

And knowing you will probably never get it back.

MBC is different

This makes my metastatic experience different from someone who is an "early stager", whose hair will grow back. It also makes it different to someone with metastatic disease who doesn't need this kind of chemotherapy. Some patients can take oral chemotherapy for years, and never lose their hair once. Others, like me, require various chemotherapies to stay alive, almost all of which cause hair loss.

While we all have the experience of cancer and its treatment, only some of us will endure the trauma of forever hair loss.

Life before MBC

It doesn't matter how nicely shaped my head is, pretty my wigs are, or on-point my scarf-wrapping ability may be. None of that is the same as having my real hair, and all the feelings that come along with it. Mainly being, the feeling of being a "normal" person. How I was before I was a lifelong cancer patient. When I didn't have to live with cancer for the rest of my life. It was, in a sense, a lifeline to my old self.

For people who say, "I don't care about being bald. It's just hair'', I envy you. Because for me, it's so much more than just hair. It's a part of myself lost forever to this disease. Robbed. Like so many other things.

I am allowed to grieve, to mourn. We all are. I am not saying goodbye to just my hair. It's a goodbye to all it represents as well.

If you live with chronic hair loss, what are your thoughts? Has it gotten easier for you? Please share your experience with our ABC Community!

Editor’s Note: We are extremely saddened to share that on Friday, October 29, 2021, Danielle Thurston passed away. We know that Danielle’s voice and perspective continue to reach so many. She will be deeply missed.