A few months ago, Ami Dodson realized that it had been almost five years since she’d let anyone take her picture.
Dodson was 35, married with two children, when she was diagnosed with breast cancer in 2010. At her local hospital in Virginia, she endured a double mastectomy with reconstruction and a long course of chemo.
About 18 months after chemo had ended, she asked her doctor, “When will my hair come back?” The doctor responded, “Everyone’s different. Be patient. Sometimes it takes a while.”
In 2012, Dodson moved to the San Francisco Bay Area and asked her new oncologist about her hair. She got basically the same response, “It takes time.”
Finally, in April 2015, she got a definitive diagnosis: permanent alopecia, or hair loss. Dodson’s hair wasn’t coming back. Ever.
Most people who go through chemo lose their hair – chemo kills all fast-growing cells, whether they’re cancer cells or hair follicle cells. And most who lose their hair will get it back, though the new hair may be different in color, texture, or thickness.
But some patients—numbers vary from 1% for some cancer drugs or treatments to 10% for others—may never get their hair back.
In my experience, folks who haven’t experienced cancer underestimate how devastating hair loss can be. Baldness tells the world you have cancer. People stare. Explanations are expected. It’s exhausting. And if the hair loss is permanent, this goes on forever.
“For years, after my cancer treatment had ended, people would come up to me and say, ‘Good for you. Keep fighting. How’s the chemo going?’ When you walk around bald, you never get to leave it behind you,” Dodson says.
There are some ways to deal with hair loss, but none of these solutions are perfect, and some are expensive. Not surprisingly, in absence of real cures, there are lots of purported “miracle” treatments that prey on the vulnerable.
Dodson’s solution to her lack of hair is a “bonded topper,” a wig that’s attached with surgical-grade adhesive. She can wash her hair and swim in it. The only downside is that she has to see her hairdresser every two weeks to reapply the topper, and it’s expensive: about $ 400 a month.
“We’re very fortunate that we can afford it,” Dodson says. “But it means cutting back on other things. And it takes a huge amount of time. It’s like going to get your hair highlighted every two weeks.”
While this side effect is less common, it does happen. So if you’re considering chemotherapy, a bone marrow transplant, or radiation to your head, make sure to ask your oncologist what risk might be. Read the fine print. Make sure you understand all the possible side effects.