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Woman who had forehead removed due to rare cancer reaches out for similar cases
A mother from Bushey Heath who had to have her entire forehead removed because of an incredibly rare form of cancer has set up a support group.
Pip Caliskan first went to the doctor 18 years ago after discovering a lump on her forehead. She was told it was probably a cyst which would go away if she left it alone.
However, she was later diagnosed with dermatofibrosarcoma protuberans (DFSP), which had spread to the soft tissue of the top her face.
The 45-year-old former nail technician said: "I still remember getting the call like it was yesterday.
"It was a Saturday morning and I was getting ready to go to work when they told me I had cancer. It didn’t make sense. I was so shocked I phoned my parents and they took me to the hospital.
"I was 27-years-old and I didn’t have a clue what lay ahead."
DFPS, which affects just 1,000 people a year with an incidence of about one to five people per million across the world, is rarely fatal but is difficult to treat because of the unique nature of the cancer's growth.
Mrs Caliskan, who lives off Elstree Road, was told by doctors her tumour consisted of spindles and tentacles of cancerous cells spreading across her forehead and would need to be surgically removed.
In 2008, after ten years of remission, Mrs Caliskan was told the cancer had returned.
She then had to have her entire forehead removed, including a massive amount of skull bone, 85 per cent in total.
Mrs Caliskan continued: "I completely fell apart when I heard the news. I had already had the cancer three times.
"The surgeon had to remove 85 per cent of the thickness of my skull bone, as well as the skin around it.
"He also took all the muscle, nerves, and soft tissue on my forehead.
"I still need to be quite careful now. Sometimes I still catch my forehead with my brush and expose the bone."
Mrs Caliskan started a support group after her surgery in 2008 to reach out to others who have experienced DFSP.
She said: "When I was first diagnosed I didn’t have a laptop or internet.
"I had to face the journey alone. For the first six months I was the only member of the Facebook group.
"Now we have almost 600 members. It is a phenomenal group.
"It is so important to be open about DFSP because it’s not a condition which is widely understood.
"Unless someone has been through it they cannot understand.
"Every time I get a new message it is heartbreaking and amazing. I am devastated to hear of more people going through what I did but I feel grateful we can share our experiences. Just last week I was contacted by a mother in Scotland whose ten year old son has just been diagnosed. It feels great to be able to give back."
Mrs Caliskan is now in remission, but has to stay vigilant against the cancer returning.
She concluded: "It is hard to remember what my life was like before the cancer. I was diagnosed in my mid 20s so it has been my adult life.
"My main strength has been my daughter. She was four when I was first diagnosed and I knew I had to just get up and get on with it. If I hadn’t have had her I wonder if I would have fought as hard as I did."
A new website has recently been set up at: http://www.thedfspnetwork.org/
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