They said my cancer was ‘baby blues’

February 26, 2012 by
Family, Health   No Comments Yet

As a first-time mother, Rebecca Holden should by rights be enjoying life to the full: pottering around the west London home where she lives with her 11-month-old son, Max, and worrying about nothing more sinister than stretch marks, sleeplessness or when to return to her job as a PA at a private equity firm. Instead, the 34-year-old has spent her first year of motherhood undergoing extensive investigations, emergency surgery, gruelling chemotherapy, regular CT scans and endless blood tests, all because of an aggressive form of bowel cancer that, Holden claims, went undiagnosed by doctors at two major London teaching hospitals. She is not alone. Research last week showed that cancer patients who are young or female face a longer wait to be diagnosed. Data from the 2010 National Cancer Patient Experience Survey in England says this may be down to doctors not expecting to find cancer in younger patients.

Max and Rebecca

Holden says that the doctors suggested that she had postnatal depression, and even claimed that her persistent complaints of agonising abdominal pain were an attempt to “get away” from her newborn baby. And so, rather than sending out baby photographs to family and friends, Holden has been in furious correspondence with the doctors she says failed her.

It was only when she had tests carried out privately that her cancer was finally discovered. Had she not been lucky enough to have private health care, it is possible she and her 37-year-old chartered surveyor husband, Piers, would not even have celebrated their first wedding anniversary last September.

“I cannot help but be furious and disappointed in the NHS doctors who didn’t   bother to investigate what the source of my pain was,” she says. “Had I not   been so fortunate as to have private health care (which most people don’t),   I believe I would be dead by now.”

Holden was admitted to Charing Cross Hospital complaining of severe upper   abdominal pain three weeks after giving birth to Max by caesarean section at   Chelsea and Westminster Hospital at the end of March last year. “I had   suffered a lot of abdominal pain in pregnancy, but as a first-time mum, I thought it was normal, and my midwife assured me it was.

But after the birth, it was more intense. In mid-April, I visited a GP who prescribed something for constipation. But I knew I wasn’t constipated. When I got home from the GP visit I was on the floor in agony, and Piers took me to A&E.

Unfortunately for Holden, the team at Charing Cross ordered only an X-ray of her abdomen, which showed congestion in the bowel. Unlike an MRI or CT scan (which gives a precise 3D image of all soft tissues in the body), this basic diagnostic test may not show up in detail a soft tissue lump or tumour. She was again diagnosed with constipation and discharged after one night in hospital. “I kept saying I know my body. I pointed out that the pain must be pretty bad if I was prepared to leave my young baby at home, but they didn’t listen.”

Two weeks later, still in pain, she went back to her GP. This time, she was told the pain might be caused by adhesions (scar tissue) forming in the bowel due to her caesarean. Then, thanks to her private employee health insurance, she was referred privately to Professor Sina Dorudi, a colorectal surgeon at the Cromwell Hospital in London, and seen the following day.

“Within 20 minutes, Professor Dorudi told me he wasn’t happy and ordered an ultrasound scan for the next day. That night I was in such pain, I had to go to A&E again. I couldn’t wait for a taxi and Piers couldn’t leave Max, so at 4am, in despair, I crawled up the road to Charing Cross Hospital. I was desperate for pain relief.”

She was admitted, and the next morning overheard a ward round surgeon suggesting postnatal depression was to blame for her condition and that she was somehow trying to “get away” from her new baby. “I was furious,” she says. “I was told to go back to Chelsea and Westminster, where I had had the baby, there was nothing they could do for me. I refused to go unless they gave me an ultrasound scan, which was grudgingly agreed to.”

The results, she was told, showed no abnormality and once more she was sent away.

Holden immediately went back to the hospital where she had given birth, with her notes, where the gynaecologist decided bowel adhesions could be to blame. “They said: ‘There’s nothing we can do today. Go away and get a referral back from your GP, or come in via A&E if the pain persists.’ By now I knew there had to be something really wrong with me but was getting no real help.”

After a desperate call to the consultant she’d seen privately, Holden was admitted to The Princess Grace Hospital, in west London, where she was given an ultrasound and a CT scan. Both showed a mass in her colon. Prof Dorudi told Holden he was 99 per cent certain she had a tumour, and the next day  his suspicions were confirmed by a colonoscopy (in which a tube with a  viewing lens is inserted into the bowel).

Five days later, towards the end of May, he operated, removing the tumour, half of Holden’s colon and her appendix. Pathology results on the tumour revealed it was graded T4 (the most serious of four stages), and was on the   verge of perforating her colon wall and spreading beyond it. The consultant told her that if she had not been treated for another week “frankly it would have been too late”.

Although further tests confirmed the cancer had not spread, the tumour had been so aggressive that Holden was prescribed a six-month course of  chemotherapy. She is now being monitored closely by her consultant and her GP with scans every three months, blood tests and bi-annual colonoscopies for the next two years.

She is, on the whole, upbeat. “I’ve been told it wasn’t hereditary and isn’t likely to come back. The professor believes that, had I not been pregnant,  it might not have shown up in time. The pressure of the baby could have pushed the tumour into a position where it caused enough pain for me to seek help. However, the cancer has had a huge impact on us; we feel robbed of the joy of our first year of marriage and parenthood.”

Holden knows that the chemo will have reduced her fertility and, because of the chaotic diagnosis, there was no time to consider freezing her eggs for future pregnancies. But she stays positive: “At least I have my lovely Max.”

Both teaching hospitals have now responded to Holden’s letters of complaint,  following inquiries by The Daily Telegraph, two months after she first contacted them. A spokesman for Charing Cross Hospital apologises for the   fact that she was “talked over” on the ward round, and pointed out that a T4 tumour in a 33-year-old is extremely rare. Imperial College Healthcare NHS   Trust, which is responsible for the hospital, told The Daily Telegraph that  “nothing on clinical examination or any of the investigations pointed to a diagnosis of colon cancer”. Chelsea and Westminster Hospital has promised that in future the possibility of a bowel tumour will be added to the list of conditions investigated at A&E when patients present with “such symptoms”. Last week the hospital said it was sorry “that the quality of Mrs Holden’s care did not meet the standards we strive to achieve”.

Holden still feels that Charing Cross is ”missing the point’’, and has carried on her correspondence, via the government’s ombudsman service, which aims to help mediate a resolution.

“What upsets me is that had I not had my private health insurance, the prognosis would have been terminal simply because the individuals in the NHS did not bother to carry out enough tests to reach the diagnosis.

“What happens to the next person of a similar age who walks into A&E with similar symptoms? Will they be sent away?”

 

 How bowel cancer is detected

Bowel cancer, also known as colon or rectal cancer, depending on where it occurs, is the third-most common cancer in the UK, with about 40,000 cases diagnosed each year. Symptoms include blood in the stools, unexplained changes in bowel habits and pain in the abdomen. Sometimes there are no symptoms until the cancer has grown so big that it obstructs or perforates the bowel. An endoscopy, in which a flexible tube with a viewing lens is inserted into the bowel, is normally used to diagnose colon cancer. To find out at what stage the cancer is and whether it has spread, doctors may use:

An ultrasound scan, which uses sound waves to look inside the abdomen.

A CT (computerised tomography) scan, which uses X-rays to build a 3D picture of tissues inside the abdomen. MRI (magnetic resonance imaging), which uses a magnetic field to get detailed pictures of inside the body.

Treatment for colon cancer usually comprises surgery, chemotherapy and radiotherapy. An NHS screening programme for bowel cancer was launched in 2006 and recommends that people between the ages of 60 and 69 are screened every two years.

 

More information Bowel Cancer UK

About the Author

Victoria Lambert has been a journalist for more than 20 years, and specialises in health and medical matters. She writes for the Telegraph, the Times, the Sunday Times, the Guardian, the Mail and the Mail on Sunday. She contributes to Saga, Geographical and First Eleven magazines – where she is the agony aunt.

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