The woman with no FOREHEAD: Woman with extremely rare cancer has the front of her skull removed

Hertfordshire mother has incredibly rare cancer - 1,000 known cases in U.S



Doctors initially thought she had a cyst on her forehead when she complained of a lump

It was later diagnosed as Dermatofibrosarcoma protuberans

DFSP is a rare form of cancer which grows in bone, muscle and skin

Pip Caliskan, 45, had extensive surgery to remove most of her forehead, including 85 per cent of the thickness of her skull, and most of her skin



She now has to wear a prosthetic to protect her brain

Mrs Caliskan has started a Facebook support group to raise awareness

A mother with an incredibly rare cancer had to have her entire forehead - including 85 per cent of her skull bone - removed, leaving her with huge scars.



Pip Caliskan, 45, of Bushey Heath, Hertfordshire, first went to the doctor complaining of a lump on her forehead and doctors said it was probably a cyst which would go away if she left it alone.

But she was later diagnosed with a rare cancer called Dermatofibrosarcoma protuberans (DFSP), which had spread to the soft tissue of the top her face.

She eventually had to have her entire forehead removed, including a massive amount of skull bone, which was replaced with a skin graft made from animal collagen.

Mrs Caliskan's forehead after 85 per cent of her skull bone, and most of her forehead skin, was removed following her lengthy treatment of the rare soft tissue cancer Her forehead skin graft is a mixture of animal collagen and grafted skin, with a prosthetic laid over the top

DFPS, which affects just 1,000 people in the U.S, is rarely fatal but it is incredibly difficult to treat because of the unique nature of the cancer's growth.



During treatment, patients often have large amounts of tissue surrounding the growth removed, often leading to heavy scarring.

Mrs Caliskan has started a support group, reaching out to other sufferers who are left to deal with the little-known condition.

In her case, surgeons had to remove about 85 per cent of the thickness of her skull bone, as well as the skin around it, for fear that the tumour had spread to the bone.

Mrs Caliskan said: 'I walk around for most of my life making sure I cover up my forehead.



Mrs Caliskan's bandages and padding are removed after her procedure, before her skin graft is put in place Mrs Caliskan's prosthetic is molded and prepared to help cover up the massive amount of bone and skin she has lost

'I’m very self conscious and get very paranoid about it. Every so often I scratch some skin away from the graft, exposing some bone.

'But I want to be very open about DFSP, because it’s not a condition which is widely understood.

'It’s considered a good cancer to have because it rarely spreads to other parts of the body. It’s not a big killer.



'But the effect it has is quite devastating. It needs dramatic treatment.



'I am now in touch with hundreds of people from all over the world who have experienced the condition and at least 80 per cent of them carry significant scars.'

Mrs Caliskan was diagnosed of DFSP in 1996, after she went to the doctor complaining of a bump in the middle of her hairline that had been bothering her for months. They said it was a cyst, and told her to leave it alone, but it was soon diagnosed as DFSP

Mrs Caliskan was diagnosed of DFSP in 1996, after she went to the doctor complaining of a bump in the middle of her hairline.

The bump had been bothering her for months, and when she finally got it diagnosed, doctors did not originally suspect a tumour, telling her it would go away on its own.



She said: 'The doctor said it was a cyst and suggested I leave it alone.



'Such things usually go away on their own and are usually harmless so I left it for six months.

'But it just got bigger, so I asked for it to be removed.



'The procedure was meant to be quite simple - a quick surgery and a couple of stitches.

'I got a phone call two weeks later to say tests had come back and had confirmed I had cancer.

'I was 27 years old and I didn’t have a clue what lay ahead.'



Mrs Caliskan's scar heals on her forehead several months after her surgery, which consisted of removing the tumorous tentacles and soft tissue, followed by a major skin graft - she was originally told that the expansive tumour was a cyst that would go away on its own The scar healed incredibly slowly, taking several months before the skin graft fully took hold and began to look like regular skin on her forehead, which now suffers a lack of about 85 per cent of the bone mass

She was told by doctors her tumour consisted of spindles and tentacles of cancerous cells spreading across her forehead and that surgery would be required.

She underwent two rounds of surgery in 1996 and 1998, and then in 2008, as she was about to celebrate ten years of living cancer-free, the tumour returned.

She said: 'The surgeon left just 15 per cent of the thickness of my skull bone.



Mrs Caliskan now has no nerves, muscle or soft tissue on her forehead, and has to wear an NHS prosthetic and wig to cover up the scarring

'I’ve got no muscle, nerves, soft tissue on my forehead.



'There’s nothing left. Over the top they laid animal collagen, and I had a skin graft over that.

'I now wear an NHS prosthetic under my hair to protect it, but I always need to be quite careful.'



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Mrs Caliskan is now in remission, but has to stay vigilant against the cancer returning.

She started a Facebook page in 2008 specifically for other people who have been diagnosed with DFSP and are looking for answers.



Mrs Caliskan with her surgeon, Mr Ciaran Healy, who performed the extensive surgery to remove, and then replace, 85 per cent of her skull bone and skin

Mrs Calliskan said: 'When I was first diagnosed we didn’t have laptops or smartphones.

'Finding information felt like an uphill struggle.

'So when the cancer came back I decided to launch a group to reach out to other people who might benefit from hearing about others’ experiences.



Mrs Caliskan picture recently (left), following her successful surgery to remove the tumours. While she is positive about her recovery, she is worried it might return, and picture only a year after her surgery (right)



'For the first six months I was the only member. Then, a very anxious young woman from America found me and told me she had just been diagnosed.

'Now we have nearly 600 members and I’m assisted by administrators from America, Canada and Australia.

'Beyond a shadow of a doubt we have collected the biggest volume of information and personal accounts.



'Collectively we have access to more knowledge and information than any one doctor or hospital anywhere in them world. I feel very glad to be part of a group like that.'

Mrs Caliskan with her daughter Leah, now 22, at her graduation (left) - Leah took care of her mother for most of the time she took to recover from the massive operation. (Right) Mrs Caliskan before the DFSP returned



The group, which is named ‘DFSP - DERMATOFIBROSARCOMA PROTUBERANS’ on Facebook, is currently planning awareness-raising through the design of a lapel ribbon and is seeking official charity status.

She said: 'It’s an amazing feeling, as a one-in-a-million case, to meet another one-in-a-million case.



'You don’t feel as alone. I’ve made some amazing friends through the group.'

