Nikita's Story

Last July when her baby was just 2 month old Nikita noticed a lump between her breasts which was getting bigger.

She went to the doctor who gave her antibiotics for an infection..2 weeks later it had doubled in size and turned purple.

They referred her to a breast clinic for biopsies and scan, just 2 weeks later she was diagnosed with leuomyosarcoma.

When it went to MDT they then said they thought it was something else. It took 6 weeks for them.to come back and say it was rare form of soft tissue sarcoma and only one other person in the UK had it.

They planned for surgery in September but it got cancelled due to a delay in making the titanium ribs they planned to change as the tumour was sitting on her ribs.

By this time the tumour had taken over most of her right breast . Surgery was finally done October 30th 2023 we're she underwent radical surgery removing her right breast and chest wall peeling the tumour of her ribs and shaving them they decided that was enough she didn't need to replace ribs.

They said they had got all they could see but the tumour ws 15 cm. In March this year she then went to London for 6 months for daily proton therapy.

Thankfully Nikita had a ct in March which was clear, however when shehad a routine chestxray in June 2024 it showed a shadow on the lung and the oncologist reassured us he thought it was inflammation from the treatment and he was not concerned.

The ct appointment was arranged for end of June early July and Nikita didn't go as was unwell on the day. She then missed the next appointment as we went to Turkey as a family after a very hard year.

The scan took place on Sept 13th and last Fri oncology rang with a results appointment. They informed us that the cancer had spread and there was nothing they could do as to many areas are affected in both lungs.

They have offered chemo but that will just give her few months upto 16 months.

We have hastily arranged this stay at Ben Saunders Foundation and are looking forward to our stay.