Daughter diagnosed with ultra-rare tumour during her mother’s cancer treatment
It was during Nicky Hutchinson’s treatment for Hodgkin lymphoma – a cancer of the lymphatic system – that her daughter, Erin Chappell, was diagnosed with a rare form of cancer.
The pair from west Devon, who are both now in remission, have revealed what it’s like to live through parallel cancer journeys.
Hutchinson, 49, was receiving chemotherapy in January 2020 when Chappell learned the intense pain she was experiencing wasn't 'period pains' as she'd initially suspected, but was actually caused by uterine rhabdomyosarcoma - a rare cancer of the uterus.
Chappell, who was diagnosed just two days before her 18th birthday, was told she had a tumour so rare it has only been identified in 10 people her age worldwide.
It grew so quickly that her womb had to be removed in February 2020, followed by her ovaries in March.
“It was amazing that we both had someone to talk to about cancer who could relate to it,” said Chappell, who is now 19. “We could share things like the fear of not knowing if it was going to kill us.
“Equally, in the back of my mind, I wished I wasn’t sharing it with my mum, as I didn’t want her to be ill, too. We were close before, but this experience has definitely brought us even closer together.”
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Hutchinson, who runs an online craft business from her home in Hatherleigh, west Devon, was diagnosed with cancer after she rapidly lost weight and “struggled to focus” in summer 2019.
“One day in September, we were all sat on the sofa and mum was completely out of it," Chappell recalled. "We’d been worried about her for a while, because she wasn’t eating properly and was throwing up immediately when she did – but she was adamant she did not need medical help.
“It got to the point where my nan called an ambulance because she knew something was wrong – and when paramedics saw her they immediately rushed her to the Royal Devon and Exeter Hospital.”
Hutchinson had an extremely severe form of thrush – made worse by her weakened immune system thanks to the cancer – and a “huge lump” on her neck, which she attributed to “inflamed glands” and believed would “die down naturally".
Instead, tests revealed she had Hodgkin lymphoma, which the NHS describes as an uncommon cancer that develops in the lymphatic system.
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Chappell said: “I was stunned when I found out. I’m so glad she had thrush, because it got her to hospital. If that hadn’t happened, she might not be here today.”
Both advanced and aggressive, the cancer had spread to Hutchinson’s bone marrow and kidneys by the time it was diagnosed.
Without treatment, doctors said she would only have six months to live. So, she began chemotherapy almost immediately, in October.
Hospitalised twice in the following weeks, as infections ravaged her weakened immune system, Hutchinson could barely look after herself, let alone others.
So, when Chappell’s intense "period pain", which she had experienced throughout 2019, became excruciating, she turned to her dad, self employed builder Ian Chappell, for support.
Diagnosed with fibroids – non cancerous growths in her uterus – in the summer, later that year they were removed.
“In November 2019 I had surgery to remove them and have a coil fitted, which doctors thought would help ease the pain,” Chappell said.
“Mum was with me before I went in for the operation, because she was also at the hospital for chemotherapy, which meant a lot.
"I was on autopilot, I remember being in so much pain I could barely think straight.”
By early December, Hutchinson was declared cancer free, just in time for Christmas, and Chappell had her coil removed around the same time. But, by early January, the teenager’s pains had returned.
Chappell said: “It got to the point that I could only bear to sit down on the toilet, because of the pressure being caused by what I soon discovered was a tumour. I would be in floods of tears. It was how I imagine labour pains to be.
“One night in January, I came downstairs in so much pain that I asked dad to take me to hospital.”
While in the A&E waiting room, medics realised Chappell needed immediate treatment and rushed her onto the children’s ward.
“I begged for morphine – I was in the worst pain I have ever had,” she added.
Scans revealed that since her fibroid surgery in November, a 7cm long tumour had developed and had prolapsed through her cervix, turning her uterus “inside out”.
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On 17 January, 2020, two days before her 18th birthday, Chappell was given the results of a biopsy, revealing that the tumour was a uterine rhabdomyosarcoma.
According to the Cureus medical journal, uterine rhabdomyosarcoma is “exceptionally scarce” with less than 35 cases being reported in English language medical journals worldwide.
“I just couldn’t stop crying. No-one knew why I had this cancer,” Chappell said.
“It is so rare, that I am one of only 10 people in the world in my age group with it, according to my doctors. Bits of my tumour have been sent all across the globe to be studied, and my case is discussed in international health groups.
“I just could not get my head around it – but I was determined not to let it spoil my 18th birthday.”
With her mum well enough to join her, Chappell, her family and 10 friends went for a meal and drinks at a Wetherspoons pub in Exeter and danced the night away.
“Mum had a cry in the loo at every available opportunity – but I had a nice night despite everything,” Chappell recalled.
“It was a nice distraction – and cocktails definitely helped. I crashed back to earth the next day, and it was not long until I had my hysterectomy on 4 February.”
Chappell’s surgeon noticed a “thickening” of the tissue surrounding her uterus, so after her eggs were harvested and cryogenically frozen, she had her ovaries removed in March 2020 as a precaution – shortly before the first national lockdown.
Before her treatment, Chappell cut off her waist-length hair before treatment and donated it to the Little Princess Trust charity that makes wigs for children with cancer.
Just officially declared an adult, this meant she was subject to COVID restrictions and had her first cycle of chemotherapy – five days of non-stop treatment – alone in hospital, as visitors had been banned.
“It was awful. I could barely eat. Even the smell of food down the corridor was making me sick,” Chappell said.
“And I had such extreme light sensitivity that I had my curtains drawn all the time and was in and out of sleep. The days all blurred into one. With my family not able to be with me, the teenage cancer charity CLIC Sargent were amazing. Their staff were always around and would pop in and have a chat. It was so nice to have a tiny bit of normality amongst all that uncertainty.”
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Although Hutchinson ended her chemotherapy in March, she still had to shield – as did Chappell, when she was not in and out of hospital for treatment.
She was thrilled when her mum was told she was in remission in May 2020.
“I was over the moon for Mum. I felt awful, physically, but when she told me about it I think I was happier than she was, as she felt guilty that I was still having chemo,” she said.
“But it was reassuring for me – it showed that chemotherapy does work.”
By August Chappell was in remission, too.
“Because we were both shielding, we could not see all the people we love to celebrate the news,” she continued.
“And we both still had a lot of emotional trauma to process, which suddenly hit us. We’ve both been in counselling since.”
Their mental health has now improved and both women have received two doses of COVID-19 vaccine, which is helping them to look forward.
Forced to leave college when she was diagnosed, Chappell is now studying an access to higher education course at Exeter College and plans to study psychology at university.
“Cancer and COVID have taken the last year away from us – so now we cannot wait for what the future brings,” she added.
Hutchinson said: “Erin’s diagnosis was heartbreaking, because she had been with me every step of the way through my experience of cancer, but I had to wave her off at the door of the hospital thanks to COVID.
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“I wish to God it had been the other way around – I would have given anything for me to have what Erin had, because the surgery has changed her life forever and I’ve already had my two beautiful children.
“This year, we’ve both been in stasis at a time where we should be getting our strength back and living life to the full. But I am so glad we are both in remission and I cannot wait until we can both get back to some kind of normality.”
For Hutchinson, hearing her daughter had cancer was worse than being diagnosed herself.
She said: “In a way, I’m glad I had cancer first because it demystified it for Erin, as she was by my side the whole way through the process, from diagnosis to remission.
“When Erin’s health started getting worse in November 2019, I had a bit of a cry because I couldn’t be there for her as a mum when she needed me most, as I couldn’t even think straight thanks to my own treatment.
“As I got better, I could repay her for all the support she gave me. And, with the help of our marvellous family we’ve got through it together – although it’s one experience I’d prefer us not to share again.”
To find out more about CLIC Sargent’s work, visit clicsargent.org.uk
Additional reporting by PA.
