INCOMPETIBLE AND UNNECESSARY: MISINFORMATION COSTS QUALITY OF LIFE

I am repeatedly surprised – and frankly disappointed – when I hear from cancer patients who, in an extremely vulnerable life situation, want to try to preserve their hair during chemotherapy, but are met with rejection and skepticism.

Every week I hear about patients who have asked about cold caps – a method that can reduce hair loss – but have been advised against it by a doctor or nurse on the basis of “ There is no evidence that it works.”

It is simply not correct.

THE METHOD WORKS - IT'S NOT NEW

Cold caps are not a new and untested method. It is a form of treatment that has been used for over 40 years. There are currently over 140 scientific studies that show documented effects. The method is recognized and widespread in most of the world, including as a standard offer in countries such as Sweden, the Netherlands, England and the USA – countries we usually compare ourselves to.

A RESOURCE ISSUE, NOT AN EFFECT PROBLEM

Even the Danish National Board of Health already took a position on the method in 2019, and several Danish hospitals have offered the method for a number of years with good results. When cold caps previously disappeared as a public offer in Denmark, it was not due to a lack of effect, but to resources, because it required staff to operate the stationary cold cap machines. We have overcome that problem now. With mobile cold caps, the patient can handle the cold caps themselves - without burdening the staff or taking up space from the physical environment.

DEGRADING AND MASSIVE LOSSES

Yet patients still experience misinformation and resistance from hospitals. I recently heard about a patient who was banished to her car to change cold caps. This is insulting and degrading, in an already difficult life situation, where as a woman in the process of cancer you are faced with the heavy subject of LOSS. Loss of a breast, loss of abdomen, loss of fertility and menopause at a much too early age. On top of that comes hair loss. For some, hair loss is the last straw. Therefore, it makes sense that many women see the opportunity to keep their hair as preserving part of their essence.

I KNOW IT - I'VE BEEN THERE MYSELF

I have been a breast cancer patient myself, and for me, losing 100% of my hair was a deeply traumatic experience. I looked sick – and I felt very sick too. How we look on the outside affects how we feel on the inside. If we didn’t already recognize this as a society, why do we give out double-digit millions in wig subsidies every year?

WHY IS THE EVIDENCE STILL BEING IGNORED?

For over a year and a half, we at Rapunzel have been making regions and hospital management aware of the continued resistance and misinformation about cold caps. And although we are fortunately experiencing that more and more healthcare professionals are now taking the method seriously and meeting patients with openness, there is still massive misinformation going on in some hospitals.

I sincerely wonder:
Why don't all doctors and nurses act on the available evidence?
Why don't they accommodate the patient who is looking for alternatives – even if the effect is not guaranteed?

It's not about a cold cap being an aid. Because as a patient you are already met with high service and open knowledge sharing – about everything from eye drops to lubricants and sex toys. You are given pamphlets in physical stacks that are almost 3 centimeters high.

FREEDOM OF CHOICE SHOULD NOT BE UP FOR NEGOTIATION

And – no – cold caps do not work for everyone. Neither does chemotherapy. Nor does medicine in general. But we offer it anyway because it can work. And because we believe in giving people a chance – and freedom of choice.

What if it gives the individual just that by having tried? A feeling of empowerment, of taking a little control in the midst of an otherwise uncontrollable situation.

Isn't that precisely part of good medical practice – supporting the patient's needs, choices, and dignity, even when the effect cannot be guaranteed?

"IT GROWS BACK" IS NOT AN ARGUMENT

Cancer patients also often hear the phrase “ it will grow back” . That is one of the most condescending and thoughtless things you can say. Yes, of course we know that! But that is not what it is about. For my own part, it has taken four years to get half as long hair as before my treatment. Four years!

And understand now, this is not about hair length. It's about identity. About well-being. About quality of life. About being able to look at yourself in the mirror and feel like a human being – not just a patient. It's about individual needs – and the right to choose for yourself.

THANK YOU TO THE PROFESSIONALS WHO ARE LISTENING

That said, I would also like to send a big and warm thank you to the many welcoming doctors and nurses who choose an objective and supportive dialogue with patients who want to use cold caps. You make a world of difference. When you as a patient are met with respect and support, both courage and hope grow.

Patients in Denmark deserve better. They deserve updated professionalism, respect and choices. Not old attitudes wrapped up as well-meaning advice.

Camilla Fielsøe van Dijk , Breast cancer in 2021, mother of 4, married and partner in Rapunzel.