Family call for more research into 'exceedingly' rare cancer after daughter's diagnosis

  • ITV News Meridian's Megan Samrai sat down with Sasha's father

A family in Kent say it's essential more research is done on one of the rarest of cancers.

Alexandra Ghosh, 15, who goes by Sasha, was diagnosed with Desmoplastic Small Round Cell Tumour two years ago.

But the family, who live in Smeeth near Ashford, say there’s "zero to no options" in the UK to deliver a targeted treatment for the disease.

Sasha's father, Arin Ghosh, said: "Prior to diagnosis she was very fit. She'd been training for the best part of six years as a gymnast, she was competing internationally.

"She was full of life, she was a bubbly young girl enjoying life with her friends to the fullest.

"And then this hit her and she’s changed from that delightful, pleasant, charming young person into someone who is incredibly strong, but at the same time incredibly vulnerable."

The family had been living in Qatar for five years, but moved back to Kent in 2022 so Sasha could have a biopsy and diagnosis.

However, they were left frustrated by the lack of specialised treatment available.  

Sasha Ghosh competed as a gymnast internationally before she was diagnosed with a rare cancer. Credit: Arin Ghosh

Arin said: "Our clinicians made it clear that the treatment she was getting was just a very broad, basic, chemotherapy regime.

"So we carried on with our search but there's just no research of this cancer. My guess is that because of the small numbers involved, there just isn't the incentive for big pharma to invest in it.

"It completely destroys you, to know that there's no hope out there really.

"I was in touch with a few clinicians in the US and they suggested that we try another type of chemo. So we did but by that time she was so weak that the chemo just hit her really badly.

"She was very very poorly so we had to stop. And then she said 'that's it for me. I don't want any more active treatment'."

Desmoplastic Small Round Cell Tumour is a rare kind of soft tissue sarcoma that normally grows in the abdomen, but can occur anywhere in the body.

Just 12 cases of Desmoplastic Small Round Cell Tumours are diagnosed every year in England on average, according to charity Sarcoma UK.

They say it is often associated with children and young adults up to the age of 30.

Sasha's type of cancer is so rare it affects just 12 people every year in England on average. Credit: Arin Ghosh

Chief Executive for Sarcoma UK, Richard Davidson said: "About one in a million people are diagnosed with Desmoplastic Small Round Cell Tumour.

"Sarcoma UK have funded a couple of projects including one at the Institute of Cancer Research in Sutton, trying to find out more about the cancer. Because it's incredibly rare, not much is known so we are doing a lot of work into the biology to find out more in the hope that treatments in the future can be found.

"Sarcoma UK is the only charity in the country that are investing in this type of research, but we need more research.

"We need to know more about it because if we're not then these rarer sarcomas, the ones that don't affect very many people will just get left behind."

Sasha's family say they want to raise the profile of this cancer and are calling for more investment.

Arin said: "For the more difficult and harder to treat cancers, there isn't the research and I think government really needs to step in and make sure there is adequate funding to have an even chance of people to actually live their lives."

The Department for Health was approached for comment but did not respond.

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