Model, 47, ‘petrified for her future’ after her hairdresser spotted ‘cyst-like’ bump that doctors dismissed for 20 years
A MUM who had a cyst-like bump on her head for 20 years was shocked to be told its true cause.
Kylie Barlett, 47, claims she had been reassured by doctors that she just had a harmless ‘skull growth’ – but her hairdresser prompted her to seek a second opinion.
The mum-of-four, from Queensland, Australia, was subsequently diagnosed with dermatofibrosarcoma protuberans — a rare soft tissue cancer that can feel like a spot at first.
After major surgery in which doctor carved cancer out of her head, she has been left with permanent hair loss.
Now, the actor and model is sharing her “terrifying” ordeal in a bid to raise awareness, especially as she was left untreated for over two decades.
“I was terrified, as it had reached an aggressive stage and they needed to operate immediately,” Kylie, who is mum to Kaleb, Viola, Molly and Audrey says.
“I was so scared I might die and not get to see my husband, Sean, and our four children anymore.
“[Initially], doctors said it was just skull growth – but since then, I’ve found out there is no such thing.
“But I trusted them, even when it kept getting bigger.
“I believe if I’d been sent me for a biopsy, I would look normal right now.
“I want people to know the importance of getting any lumps checked and asking for a second opinion.
“Detecting the cancer when I did saved my life, as it’s given me more time.”
Kylie first noticed the lump in the early 2000s and sought out medical advice immediately, but claims she was “dismissed”.
In January 2020, the mum decided to get a second opinion after her hairdresser asked if she was aware of a cyst forming on her head.
She said: “I went to a new doctor, who sent me for an ultrasound and a biopsy.
“Before this, I had no concerns it was cancer.”
Kylie received her diagnosis in May 2020 and was told she’d need to undergo a major operation fast.
She recalls: “When I was diagnosed I was terrified. It was a day I’ll never forget because hearing that you have cancer is the worst thing in the world.
“I was so scared also because the operation came with high risks of death so I was so terrified and so scared that I wouldn’t make it out alive and never see my children grow.
“It was such a scary time of my life. Trying to reassure my kids that I should be ok was so hard. We all knew there was a risk that I wouldn’t come out of it so yeah I was beside myself with fear.”
There are an average of 147 cases of dermatofibrosarcoma protuberans (DFSP) diagnosed every year in England, according to Sarcoma UK.
I’ll be bald forever as all the hair follicles were removed when they took my scalp
Kylie Barlett
DFSPs grows slowly and rarely spread beyond the skin, according to Mayo Clinic, with people living for many years after treatment.
However, the roots of the cancer can go deep into the skin and therefore cutting it out can require reconstruction surgery.
The growths typically appear on the arms, legs and trunk and can look like a pimple or rough patch of skin at first.
Surgeons removed the cancerous lump and reconstructed her head using the muscles in her back. A skin graft was also taken from her leg.
Kylie was overjoyed to wake up alive following surgery but there was still a painful recovery ahead.
The mum says: “I had no pain on my head because they had cut the nerve endings but I had two drains coming out of my back and all the stitches.
“It was impossible to move, cough or do anything without it hurting my back. My leg hurt too from the skin graft.
“I wasn’t a fan of mirrors though, as I was left with a huge bald spot on the back of my head.
“I had a panic attack because I was so scared of looking in the mirror and seeing how I would look.
“That panic attack really hurt my back surgical site and I just couldn’t prepare mentally for what I was going to look like.”
Wiggin’ it
Kylie won’t be able to grow her hair back, either, saying: “My hair will never grow back in the surgical graft site, or bald spot, because there are no hair follicles there.
“I’ll be bald forever as all the hair follicles were removed when they took my scalp.”
Kylie thought she would have to live the rest of her life wearing beanies because she didn’t like wigs, but changed her mind after trying on some with her best friend.
She says: “I agreed to try on some wigs with my best friend for a laugh.
“I laughed and laughed – it was the first real laugh I’d had in months; my life had become so serious.
“I decided that if I was going to have to wear wigs I would wear a different wig every day.
“That led to Google searches, which led to Instagram and a world of women suffering from hair loss. Then I was hooked.”
The symptoms of DFSPs - and other dodgy skin bumps
Symptoms of DFSP can vary depending on the size and location of the tumour, according to Sarcoma UK.
Some or all of these symptoms may occur:
- A slow growing and often painless lump under the skin
- A scar or a deep-seated pimple on the skin, that may easily crack open or bleed
- A lump with the skin over it feeling soft and indented
- Skin that is pink to brown in colour and sometimes may appear in shades of purple (it may look like a bruise).
If DFSP is left for several years, it can grow through the top layer of the skin and develop into an ulcer.
Dodgy moles
The NHS says signs a mole could be cancer include it:
- Getting bigger
- Changing shape
- Changing colour
- Bleeding or becoming crusty
- Itchy or sore
If you have a mole that shows any of these symptoms, contact your GP as soon as possible.
What is the ABCDE checklist?
If you are unsure about a mole, you can use the ABCDE checklist to help you tell the difference between what’s normal and a concern.
A – asymmetry – the two halves of the area may differ in shape or colour
B – border – the edges of the area may be irregular or blurred, and sometimes show notches
C – colour – this may be uneven. Several different shades of black, brown and pink may be seen
D – diameter – most melanomas are at least 6mm in diameter. Report any change in size, shape or diameter to your doctor
E – evolution – if you see progressive changes in size, shape or colour over weeks or a few months, you must seek expert help
Also look out for…
Non-melanoma is a type of skin cancer that does not involve changes in the moles, but skin growth that slowly grows over months, sometimes years.
The two most common types of non-melanoma skin cancer are basal cell cancer and squamous cell carcinoma.
Signs of BCCs include a skin growth that:
- Looks smooth and pearly
- Seems waxy
- Looks like a firm, red lump
- Sometimes bleeds
- Develops a scab or crust
- Never completely heals
- Is itchy
- Looks like a flat red spot and is scaly and crusty
- Develops into a painless ulcer
Signs of squamous cell carcinoma (SCC) include lump on the skin that may:
- Appear scaly
- Have a hard, crusty cap
- Be raised
- Be tender to touch
- Bleed sometimes
Kylie now has nearly 12,000 followers on her Instagram, (@thewigandi), where she posts reviews and shares her experiences.
But she still struggles with accepting how she looks after cancer.
She adds: “Sometimes, I feel like I look hideous and I don’t want to scare anyone – especially when I see a picture of the side of my head where the scar goes down near my ear.
“I don’t see it that often so when I do see it I’m speechless. This isn’t how anyone would want to look and sometimes it just hurts so much.
“I still tell my family when I’m going to take my wig off just in case they aren’t ready.
“I think that it is going to take a long time to fully accept what happened to me and how I look.
“I had never ever heard of [this cancer] before my diagnosis.”