Jo Knight, like many others, never expected her battle with breast cancer to leave her with a traumatic lifelong reminder—permanent chemotherapy-induced alopecia (PCIA). Diagnosed in 2017, Jo has turned her experience with PCIA into powerful advocacy for raising awareness of the condition and supporting others facing cancer treatment. We recently spoke with Jo about her experience with PCIA.
Jo was diagnosed with breast cancer in 2017 and underwent six months of chemotherapy. While her treatment successfully targeted the cancer, it also caused permanent damage to her hair follicles. “I wasn’t given much information about the possibility of permanent hair loss,” Jo said, reflecting on her experience. “I just assumed my hair would grow back thicker and curlier after treatment.”
Similar to other patients, Jo was not told about the risks of PCIA. Though scalp cooling was briefly mentioned, she wasn’t informed about how it could protect her hair. Unfortunately, Jo’s hair never fully returned after chemotherapy, leaving her with thin, fluffy hair that has affected her sense of self.
It wasn’t until recently that Jo was diagnosed with PCIA. Coming to terms with this permanent change has been emotionally challenging for her. “For a long time, I lived with the hope that my hair would grow back. Dermatologists and other professionals encouraged me to try various treatments like minoxidil, but nothing worked,” she said. Eventually, a trichologist confirmed that her hair follicles were irreversibly damaged, and her hair wouldn’t grow back.
She now wears headscarves and occasionally uses a hair replacement system but, in her interview, acknowledged how difficult it has been to come to terms with the change. “People assume I’m still in treatment, and it’s tough when they don’t know how to approach you.”
Now seven years on from her cancer diagnosis, Jo has taken steps to support other women going through treatment. It started three years ago, when Jo began asking her local community to donate headscarves for women experiencing hair loss, a gesture that was inspired by her own struggles. “I was inundated with headscarves on my doorstep and also other items such as wigs,” Jo says, noting how quickly her initiative grew.
What began as a simple request has since become a registered charity called Preloved Reloved Cancer and Beyond, which provides wigs, headscarves, mastectomy bras, and other items to women who need them. These essential items, often seen as luxuries, are vital necessities, particularly for women who are dealing with the physical and emotional challenges of chemotherapy-induced hair loss. “It’s really, really important,” Jo said, emphasising the role that wigs and head coverings play in boosting confidence during and after treatment.
Jo’s diagnosis of PCIA brought with it a wave of emotions. “All the way through my treatment and having lost my hair, I felt quite comfortable with it because I wasn’t going to let cancer beat me,” Jo told us. But learning that her hair wouldn’t grow back was difficult to accept.
“It makes me look very differently at myself… I have come to terms with it but when I was first diagnosed, I was really upset… I wouldn’t say my world came crashing down, but that hope that my hair may grow back was then lost, knowing that it will not, and this is normal for the rest of my life.”
While she keeps her hair short and uses headscarves and a hair replacement system, she admitted it is still quite upsetting.
For Jo, living with PCIA has changed how she views herself and how others perceive her. She expressed that people that don’t know her assume she is still in treatment and the awkwardness of how others react to her appearance. “It’s tough and it’s really hard.”
“It’s Not Just Hair”
One of the most important messages Jo wants to share is that PCIA is more than a cosmetic issue. “It’s not just hair,” she said, addressing this common misunderstanding.
“I think people really need to be very careful when they say this to a woman or even a man who's really self-conscious about having lost his hair through chemotherapy.”
The emotional impact of permanent hair loss can be profound, affecting a person’s confidence, self-esteem, and how they interact with others. Jo stressed the need for greater empathy, for men and for women, from those who dismiss it as a minor side effect.
Jo believes that oncologists, nurses, and other medical professionals need to be better informed about PCIA and its impact. “I wasn’t given the information, I wasn’t given the choices,” Jo told us, adding that she would have considered scalp cooling had she known it could have helped protect her hair follicles from permanent damage.
Her advice to anyone about to begin chemotherapy is clear: “Self-advocate, ask questions, and prevention is the focus. Scalp cooling can help to protect your hair follicles and promote healthy hair growth.” Jo emphasised that patients shouldn’t have to advocate for themselves, but often they do because the information isn’t readily provided, “We should be given this information before we start treatment.”
Jo’s message to oncologists is simple: “Please educate yourselves on hair loss and persistent / permanent chemotherapy-induced alopecia.” She urges them to acknowledge the emotional and psychological toll of hair loss on patients, and not to dismiss it as a superficial concern. “It affects us all differently, and I think it’s so very important that you don’t treat it as just hair.”
“I'm quite a confident person, I like the way I look, but I have had to come to terms with it. Sometimes I wear hair, sometimes I don't. We have the options, but I shouldn't have to have those options. I should have hair, and I should have been given that information and given those choices when I was diagnosed, before having chemotherapy.”
Through her charity and her advocacy, Jo continues to support women experiencing hair loss and raises awareness of the impact of PCIA. Her goal is to ensure that no one else has to go through what she did without being fully informed about their options. “Knowledge is power,” she says, and she is determined to make sure others have the power to make informed choices about their treatment.
