At the age of 29, Dee Herbert was diagnosed with rectal cancer and was told that the only option was a colostomy bag for life. She was one of the first patients to have the APPEAR procedure, which meant she did not need a colostomy bag. Now she and her husband have two children and she’s been given the all-clear from cancer.
At the age of 29 she discovered she had rectal cancer and faced having a colostomy bag for life. Children seemed an impossibility.
But she underwent a pioneering operation, funded by Bowel & Cancer Research, which saved her life. And when Natasha was born in February 2010, a sister for three-year-old Dylan, her family was complete.
It took a while for Dee’s cancer to be diagnosed.
“Looking back now, I did have symptoms,” she said. “But I had no idea it could be serious – I was only 26 years old.
“I was always tired. I’d fall asleep if I sat down for more than 20 minutes.”
Dee, now 37, was working in London at Woolworths’ head office at the time, as a merchandiser for the Ladybird brand.
“It was tough. But everyone always moans about being tired and needing a holiday so I thought I was no different.”
Her GP prescribed anti-depresssants, beta blockers and sleeping pills which she took on and off for three years.
In July 2003, Dee married Christian, the man she’d met at University in London.
“I was struggling but I put it down to stress and nerves. We went to Florida for a short holiday and that’s when I went to the loo and saw a drop of blood on the toilet tissue.”
Back home in London, she went to her GP who referred her to a consultant.
“He said I had a polyp – I needed a colonoscopy and they’d snip it off,” she said.
The appointment for her NHS operation was three months away, but as the weeks ticked by, the worry became unbearable and Dee broke down at work.
She had just started a new job as a logistics analyst for the Arcadia group in London.
“My manager was fantastic and helped me arrrange private medical insurance so I could see a private consultant immediately.”
She did get an immediate biopsy – but on November 5, 2003, she was told she had rectal cancer. There was no history of cancer in her family and the diagnosis came as a bolt from the blue.
“I was devastated. How could that happen when I was only 29? My life just fell away before me. I’d only been married for three months. We wanted to have a family. We thought we had everything to live for.”
Then came a series of scans and the ‘had it spread’ consultation.
The good news was that the cancer was confined to the rectum, but the position of the tumour was a problem: it was low, and very near the sphincter.
“The consultant said I had no choice but to have my whole colon and rectum removed. I’d have to live with a colostomy bag for the rest of my life,” said Dee.
At the time, the prospect of living with a stoma didn’t seem too serious. “All Christian and I wanted was for the cancer to be removed. I’d have said ‘yes’ to anything that would save my life,” said Dee.
But one of her friends was a vascular surgeon who knew how difficult it would be for Dee to live with a permanent colostomy bag, especially if she wanted to start a family. It was also feared that radiotherapy could affect her fertility.
He suggested she went to the Royal London Hospital.
“Meeting Professor Norman Williams at the Royal London was one of the turning points in my life,” said Dee. “He was very concerned that I was so young and might have to give up the chance of having children.
“I didn’t realise at the time that I was going to be a bit of a guinea pig, but I had utmost faith that he wouldn’t be doing this operation for the sake of it, that there was hope.”
She agreed to undergo what was then an experimental procedure called APPEAR (Anterior Perineal PlanE for ultra-low Anterior Resection) which retains as much of the sphincter muscle in the rectum as possible.
The operation is effective for 3,000 people in the UK whose cancer is very low in the rectum, as well as thousands more with ulcerative colitis, non-cancerous growths and traumatic damage.
Professor Williams and his team have carried out the procedure on many more patients at the Royal London Hospital, and most have avoided a permanent colostomy bag, or stoma, which would have been necessary with conventional surgery which removes the entire rectum.
Dee’s treatment began with an ileostomy, followed by chemotherapy. She was also told the cancer had spread to the lymph nodes and was more serious than originally thought.
“I was broken,” said Dee. “I cried uncontrollably.”
“I didn’t lose my hair and I looked fine. But I felt absolutely awful for six months. I had a sore mouth, sore hands and all the other side-effects of chemotherapy.”
It was tough for her husband Christian too. And financial pressures increased when he lost his job because he was taking so much time off work to be with Dee in hospital.
“I couldn’t have got through without him. He was so positive and forced me to think I was going to be okay. He was such a rock.”
A year after her first operation, Dee went to have her ileostomy reversed in October 2004. The operation was a success. And she got the all-clear after her five-year check-up in September 2010. (No Evidence of Disease).
She now sees a consultant once a year for ultrasound scans, CT scans and colonoscopies. She has weaned herself off daily doses of laxatives and now has a more or less normal function.
“Generally I’m able to lead a normal life. All the effects of surgery are manageable,” she said.
She and Christian had their first child, Dylan, in 2006 and Natasha was born in February 2010. The family lived in Epsom before Christian got a new job in Germany.
“I’m still sometimes gripped by a fear that the cancer will come back, but I’m determined to stay positive,” she said.
“I’m also continually improving. I can control my condition with a good diet, and I can do whatever I want.
“Frankly, I’m lucky to be alive. And I’m really grateful to Bowel & Cancer Research and all those who made that possible.”