'Lasting legacy' for Nottinghamshire mum who died from incredibly rare cancer

Darshana Nagar

A Calverton man is hoping to ensure a “lasting legacy” for his wife after her death from an incredibly rare form of cancer aged just 47. Darshana Nagar, a mum of two, passed away in September 2022 at Nottingham’s Hayward House Hospice following an illness which was initially treated as breast cancer.

It was eventually revealed that Darshana was suffering from an incredibly rare cancer that is usually benign. Sandip Nagar, who was due to celebrate 25 years of marriage with Darshana, is now spearheading an effort to increase awareness of her condition across the country.

Darshana’s own research showed she had been battling phyllodes tumours. Describing the illness, guidance from Macmillan says: “Phyllodes tumours are rare and most are non-cancerous… Phyllodes tumours usually only affect one breast.

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“But sometimes they affect both breasts. It is uncommon for phyllodes tumours to spread to other parts of the body.”

In Darshana’s case, an initial lump was removed at Nottingham City Hospital but then returned three months later. An emergency mastectomy followed and further scans showed the tumours had spread.

Darshana’s research led her to University College Hospital London (UCHL) and to an oncologist, Dr Ahmed, who specialised in phyllodes. It was agreed that all care and treatment would be moved to London, where Darshana underwent strong chemotherapy treatment and was given various scans and regular checks.

The only scan Darshana did not receive was a head scan and it was eventually confirmed that the tumours had spread to her brain. Radiotherapy allowed Darshana to live another seven weeks before her death on September 24, 2022.

Sandip, 49, said: “We had a holiday booked in Italy in the July and we were told that we absolutely must go on that holiday. We had just got back from Italy and we thought Darshana had Covid, but scans later showed she had over 10 tumours in her head.”

The tragedy has already led to changes, with phyllodes patients at UCHL now receiving a head scan as standard. On top of that, new national guidelines for phyllodes are set to go live in the coming months after close cooperation between Dr Ahmed and the breast surgeon who originally treated Darshana at Nottingham City Hospital.

Sandip is also determined to improve awareness of the condition more broadly, with a fundraising effort having secured nearly £40,000 for the registered charity set up for phyllodes research at UCHL. Fundraising activity has included efforts by The Teahouse at Carr Bank Park in Mansfield, which Darshana ran.

Sandip said: “I can’t thank the staff and customers at The Teahouse enough, they have been so supportive. The atmosphere of the place has changed now, even the customers who come in know about the story and there is a lot of love there.

“The beauty of all this is that we’re creating a lasting legacy for Darshana. She continued researching because she didn’t want other women to suffer. We met at university and we would have been married for 25 years, but she didn’t get to see that. She was able to see our son’s 21st birthday and our daughter’s 18th birthday.

“It’s now a good time to close the fundraising page. It was getting harder and harder for me to see all the messages of support on JustGiving and the longer the page stayed open, the longer the money wasn’t being used on research.” Sandip is due to present a cheque to UCHL next month.