Central Hawke’s Bay mum has leg removed in fight against clear cell sarcoma pain

Central Hawke's Bay woman Alicia Brough has had her right leg amputated to rid herself of the pain from the largest terminal stage four Clear Cell Sarcoma tumour in her knee.

When Central Hawke’s Bay mum Alicia Brough was asked if she wanted to keep her amputated leg, she politely told the medical professionals it was a “hard no”.

She’s donated it to cancer research instead.

Brough’s right knee was where clear cell sarcoma cancer started. It has since spread to her lungs and lymph nodes and she has been given a terminal diagnosis.

Removing her leg was a tough decision, but she’s hoping by sacrificing it, she can buy more happy moments with her children.

“I’m probably not going to be cured unless a miracle happens, but time is what I am after and quality time.”

When Hawke’s Bay Today spoke with her in June last year, she was fundraising to travel and get treatment in Mexico.

Brough planned to go to the Sanoviv Medical Institute and was fundraising to cover the cost of $100,000 for three weeks of treatment.

When in Mexico, she was advised to take a drug called Keytruda, which, in another blow to her health, left her with type 1 diabetes and impacted her liver.

Doctors then recommended a leg amputation to help with the pain the clear cell sarcoma caused in her knee.

She decided to go ahead with it in November, but then held off until March for one last summer with it.

“I had to talk myself into it, and the more pain I had, the more I knew that it was the right decision.”

She said pain was impacting her ability to be an active mum.

“I don’t want to be grumpy mum that is just in pain all the time.”

She said on the day of surgery in Auckland, she felt both nervous and excited.

“When I woke up and looked down, it sunk in as surreal, and there is no going back now.”

Alicia Brough said she has noticed a decrease in pain since having her leg removed.

It’s now been three weeks since the amputation, halfway down her thigh, which meant the largest tumour in her body was now gone.

It is unlikely to change her terminal prognosis, but she has chosen to focus her mindset on the positives of the situation.

“I feel like a new person, I don’t even care that I don’t have a leg.”

Despite her leg no longer being physically attached to her body, Brough said she still experiences phantom pain in her non-existent ankle.

“It feels like I’ve got an electric fence around my foot that shocks me randomly.

“I still go to scratch it, like it still has itchiness, and it feels like it is dead weight hanging off there, and totally feels like it’s still there.”

Brough said she used a walker and crutches to get around and was able to stand for longer than before.

She estimates it will take another three months to get her prosthetic leg to help her achieve a goal of playing sport again.

She also has plans to modify her car so she can drive again, and she is trying to figure out how to vacuum.

While in Auckland, Brough also underwent Cryoablation, a procedure that uses extreme cold (often argon gas) to freeze and destroy abnormal tissue, including cancer cells.

She is waiting to see if that has helped.

Michaela Gower joined Hawke’s Bay Today in 2023 and is based out of the Hastings newsroom. She covers Dannevirke and Hawke’s Bay news and loves sharing stories about farming and rural communities.