Margaret Chung, Buckinghamshire
My daughter, Annabel was 34 when she was first started experiencing symptoms of bowel cancer. She didn’t have a lot of symptoms to start with and first went to her GP in 2013 after having her thyroid removed.
In 2014, she was very tired all the time and went back to the GP, but they just increased the dosage of medication for her thyroid. A blood test revealed that Annabel was severely low in Vitamin D and referred her to an Endocrinologist. We later found out in her GP notes that an Endocrinologist wrote to her GP and said it was unlikely to be a thyroid problem and recommend screening for other causes.
In March 2015, Annabel went back to the GP as she was vomiting and had a high temperate. This time the GP suspected it was gastroenteritis. A few months later, Annabel went back to the GP and a blood test showed she was anaemic and prescribed iron tablets. She went back for another blood test in August 2015 and despite being on iron tablets, she also had low Vitamin D.
In October 2015, as she was still experiencing extreme fatigue and her GP dismissed this symptom and referred her to Healthy Minds (a mental health telephone consultant), as they thought she had mental health problems.
On Christmas Eve 2015, she was given two pints of blood as she had microcytic anaemia. The following January, she started experiencing severe abdominal pain and was rushed to A&E. Annabel was seen by the gastro team, where she had a gastroscopy, but nothing was found and was advised to go back to the GP.
Later in January 2016, Annabel had more blood tests, which showed she was still severely anaemic and the GP increased her thyroid medication. In March 2016, Annabel had a pelvic scan that showed a polyp but nothing alarming.
In March 2016, she had a diagnostic test for ovarian cancer as she had a family history of the disease. Nothing was found and was referred back to the gastro team.
Every day I ask how many young people have to die before something is done?
By the end of March 2016, she had lost 5kgs, was still experiencing severe abdominal pain but her bowels were normal. Annabel had more blood tests, followed by a CT scan in April but she never got the results and a week later Annabel had a colonoscopy, where they saw cancerous polyps and she was urgently referred for surgery.
Whilst we were waiting for surgery, Annabel was admitted to A&E after severe vomiting but was discharged. Annabel had a blood transfusion, followed by surgery to remove the tumour. However, it was too late as it had already spread to her lymph nodes. Doctors delayed her chemo for three weeks as she kept feeling nauseous.
Annabel had KRAS wildtype and the chemo was specifically targeted for that type of cancer. A CT scan half way through her treatment was inconclusive but the Oncologist made the decision not to change the chemo regime. However, on the 10th session he changed the chemo drug to Oxyplatin, which made her very sick; she couldn’t even get out of bed. This didn’t do much though. The Palliative care nurse made a visit and was going to come back the next day. Annabel seemed fine, she was laughing and chatting. She didn’t make it through the night and when I woke up she was gone. She died on Sunday 6 November 2016.
I didn’t expect her to go so quickly, I thought she would see Christmas.
It makes me angry, why did none of her GPs think outside the box? Every time she went to the GP, she saw a different one! When Annabel complained to NHS England, they sided with the GP. They said they would have never expected someone so young to have bowel cancer. Every day I ask how many young people have to die before something is done?
Surely certain measures need to be put in place, so that the diagnosis of bowel cancer isn’t influenced by someone’s age and for a doctor to assess the symptoms of the individual person.
But we’re leading change
Never Too Young is leading change for younger bowel cancer patients. Every year 2,500 younger people are diagnosed with bowel cancer in the UK. Our research has shown that younger bowel cancer patients have a very different experience of diagnosis, treatment and care.
What are we calling for?
- Improved clinical guidance and practice on bowel cancer in younger people
- Improved identification of people with genetic conditions and access to surveillance screening
- Improved information for younger people on bowel cancer symptoms