12/04/2024 | Press releases

Patient on research study shares her story about the cancer ‘no one talks about’

Caroline Hyde was aware of bowel cancer.

She’d followed Deborah James – also known as Bowel Babe – and her experience of being diagnosed, having treatment, and then sadly dying of the disease in June 2022.

So when Caroline noticed blood in her poo and experienced pain, she was concerned she may have bowel cancer too.

However, the mum-of-four from Clacton, was eventually diagnosed, not with bowel cancer, but anal cancer.

Group of people standing under large Christmas bauble
Left to right: Caroline’s daughters Madeleine and Charlotte, her sister Clare, her Mum Patricia, Caroline and then daughter Isobel

The 53-year-old had radiotherapy and chemotherapy at Colchester Hospital and is part of the PLATO ACT5 research study looking into treatment options.

She said: “I started to get blood in my poo, then found a little lump between my vagina and bum. At first it was thought it was a pile, but sitting down became increasingly painful and I started making loads of adjustments like sitting on a donut cushion and having to stand up all the time.”

After a referral to the hospital and a biopsy, Caroline was diagnosed with anal cancer in October 2022. The first step of treatment was having an operation to have a stoma bag just before Christmas 2022.

Woman sitting in a chair looking at camera

She added: “I felt positive about having a stoma bag as it was my route to getting the treatment I needed.”

Caroline was asked if she’d like to join the PLATO ACT5 study looking at the different levels of radiotherapy given to patients. The study was randomised, meaning Caroline didn’t have a choice whether she’d receive the standard level of radiotherapy or an increased dose.

“I said don’t tell me. I didn’t want to know as obviously wanted to have the increased dose,” she added. “I know now I had the standard level, but being on the research study was positive as it meant I had my research nurse Celine as a constant point of contact the whole way through. She was amazing.”

Three women with masks under chin. One woman is ringing a bell
Caroline (right) with her mum and sister (middle). Caroline is ringing the bell at the end to mark the end of her cancer treatment.

Caroline has been supported through her treatment by her family, including husband Paul, children Isobel, 20, Madeleine, 17, Elliott, 15, Charlotte, 14, and mum Patricia, as well as her sister Clare who has attended all the hospital appointments with her.

Caroline said: “I’ve had some dark thoughts along the way, but I’ve had the attitude that I’ve got to get on with it and get through it. I’ve continued to work in the school office and have even worked from bed when necessary.

“My family are a reason to get through this and they’ve been wonderful, treating me as normal and having a laugh with me. I’m really pleased to say I’ve had the absolutely wonderful news that I’m now cancer free!”

Following in the footsteps of Bowel Babe, Caroline has started a TikTok to share her journey through treatment.

She said: “People don’t talk about anal cancer. I’d never heard of anal cancer before in my life. I want to share for others going through the same thing as me.”

Caroline will now have regular scans to check the cancer hasn’t returned.

The PLATO ACT5 study is looking at whether the normal level of radiotherapy or a higher dose of radiotherapy is more effective in treating more advanced anal cancer. Research participants have radiotherapy and chemotherapy over five and a half weeks, every day from Monday to Friday. Recruitment to ACT5 closed in August 2023, having recruited 459 participants, and these participants are now being followed up so the first results of the trial can be available in 2025.

Woman in maroon clinical uniform
Celine Driscoll

Celine Driscoll is a research radiographer and oncology clinical trials team leader at East Suffolk and North Essex NHS Foundation Trust (ESNEFT) that runs Colchester Hospital. She said: “Caroline has done incredibly well to get through the treatment the way she has. Having intense radiotherapy to your anus is very painful and it’s worse for women as the anus is close to the vagina and both can become quite sore from the treatment.

“She’s an amazing woman and has shown incredible strength to get through the treatment in the way she did.”

Consultant clinical oncologist Sadaf Usman is the principal investigator of the study at ESNEFT.

She said: “It’s really encouraging to read Caroline’s story and to see her going through the treatment. I’m sure it will be for other patients as well.

“Studies like PLATO are a ray of light for these cancers with unmet needs.”

The study is funded by Cancer Research UK and Stand Up To Cancer and is being managed by the University of Leeds Cancer Research UK Clinical Trials Unit in Leeds. It is led by David Sebag-Montefiore, Professor of Clinical Oncology at the University of Leeds and Leeds Teaching Hospitals NHS Trust, working with a national multidisciplinary team.

Professor Sarah Brown, Director of the Cancer Research UK Clinical Trials Unit, said: “Clinical trials like PLATO are designed to give the evidence we need to change treatment and improve outcomes for patients. PLATO collects information about cancer outcomes as well as how patients feel during and after treatment, so that we can see the whole picture. This trial will help us make decisions about treatment for patients with different stages of anal cancer in the future.”

Professor David Sebag-Montefiore, Professor of Clinical Oncology at the University of Leeds and Leeds Teaching Hospitals NHS Trust said: “Due to major advances in technology, radiotherapy is now a much more precise treatment. We are now able to deliver higher doses of radiotherapy to the tumour whilst avoiding the surrounding normal tissues.

“Whilst scientific evidence suggests that a higher dose or radiotherapy will be more effective for locally-advanced anal cancer than the standard dose we use today, the results of the PLATO trial are essential to inform whether this is the case.

“We are so grateful to patients such as Caroline who have participated in the trial to help determine whether a higher dose of radiotherapy will become a standard approach for future patients.”

Caroline has given her consent to share her story about her involvement with the study.

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