Late diagnosis means more young Kiwis getting bowel cancer
Auckland woman Kim Girbin reported stomach pains to her GP for three years before a shock diagnosis of terminal bowel cancer in June.
The 39-year-old mother and grandmother has been given 18 months to live and has begun making funeral arrangements.
The tumour in Girbin's bowel is so large it is inoperable and has spread to lymph nodes throughout her body.
"Everyday I wake up and I just want it to be a bad dream and go away."
READ MORE: New mum diagnosed with bowel cancer
A growing number of younger Kiwis are getting bowel cancer after a late diagnosis with a colonoscopy.
Some, like Girbin, only discover they have the disease once it has become a death sentence.
New Zealand has one of the highest incidences of bowel cancer in the world with more than 3000 people diagnosed and 1200 deaths from the disease each year.
Access to publicly-funded colonoscopy services are managed by district health boards and the threshold for people younger than 50 years old with no family history of the disease is higher than for those over 50.
Rectal bleeding and changes in bowel habits for longer than six weeks are the key symptoms that may be a sign of bowel cancer according to the Ministry of Health.
The otherwise fit and healthy retail marketer said she reported persistent, random "stabbing" stomach pains to her GP for three years but was not referred for a colonoscopy until this year when the symptoms continued to worsen.
At times she was forced to pull off the highway while driving, crippled over with pain.
"[The GP] kept saying it was womanly issues or as you get older you get pains and I was like well, I know my body, my body doesn't just get pains and this is weird."
Told it would take three to four months for a colonoscopy in the public system Girbin paid $2000 to have it done privately and in June she received the devastating diagnosis.
In December last year she paid for an ultrasound privately but the company scanned her pelvic area and not her stomach.
"I couldn't understand why the bowel cancer didn't show up on the ultrasound and I've just found out they just did the pelvic area and not the stomach which is what I paid and asked for."
Girbin said she would have pushed to get a colonoscopy earlier if she had known what the symptoms could mean.
"If it can happen to me – the fittest, healthiest person – then it can happen to anyone."
I just want to say to people ....be aware of your body and if something isn't right go to the doctor and don't accept that this is what happens."
For Rotorua woman Toni Hamill,36, rectal bleeding and abdominal pain for two years was not enough to prompt a referral for a colonoscopy.
Her GP prescribed cream for hemorrhoids but the symptoms continued.
At repeat appointments Hamill said her symptoms were "brushed off" and even a specialist appointment left her with no answers.
"He had a look and said he thought it was piles or might be a fissure but there was no need for a colonoscopy."
At a second specialist appointment she was told it was probably Irritable Bowel Syndrome (IBS) or Crohn's but cancer was never mentioned.
By the time she received an appointment for a colonoscopy she was four weeks pregnant and the procedure was delayed until her baby was nine weeks old.
During the procedure she was told she had a tumour in her bowel.
"I guess I was just like 'I knew it', I was gobsmacked."
Hamill has had 33cm of her bowel removed, has started chemotherapy.
"I want this to be spoken of and I want people to be aware that it is not OK, that if you are getting these symptoms dig deep for them, you know, get the answers."
A recent study by professor of colorectal surgery at Otago University, Christchurch Frank Frizelle and colleagues found rectal cancer had increased by 13 per cent among women, and 18 per cent among men in the younger age group over the past 20 years.
"Rectal cancer is becoming more common in younger people . Now, it is still a lot less common than in those over 50... but the fact is rectal cancer is becoming more common in younger people."
Christchurch man Brad Beveridge,38, said he initially dismissed a change in bowel motions which started two years ago. But when blood appeared he went to his GP.
"That was primarily because a good friend of mine died a year ago of bowel cancer that had gone undiagnosed because her GP would not refer her to further investigation."
Beveridge has had surgery to remove the tumour, finished chemotherapy and one year on has no further signs of cancer.
"I really do feel very fortunate because I could been in a much worse position right now."
His GP said Beveridge's private health insurance would make access to a colonoscopy easier.
"He said I didn't really fit the criteria for what is typically investigated by the public [system] which is, I'm too young."
Christchurch GP and senior lecturer in general practice at Otago University, Christchurch Dr Ben Hudson said GPs had to consider clinical factors and the availability of services when referring patients for colonoscopies.
"The symptoms that could prompt you to make a referral are very common and thankfully in the majority of people won't indicate significant underlying disease so you have to make a clinical judgement about whether the likelihood of disease is sufficient and the colonoscopy with it's own discomfort, risk and cost is warranted."
Even a family history of bowel cancer was not enough for Dunedin woman Sandra McNab,49, to gain access to a colonoscopy when she presented to her GP with persistent constipation and then severe vomiting for six months.
McNab paid for a colonoscopy after being refused one publicly and was diagnosed with bowel cancer in December last year. She has had surgery and chemotherapy but said the mental anguish caused by her persistent mis-diagnosis had been extremely traumatic.
"The irony for me is that I was on a five yearly screening programme because I have a family history of bowel cancer. And yet when I became symptomatic they denied it to me.
Despite losing 16kgs in weight and being given morphine for pain she says doctors continued to label her condition as constipation.
"I got so bad I was going to kill myself I was that low. I had exhausted all avenues and I was getting no help, I don't ever want anyone to go through what I had to go through."
Medical director of the Cancer Society of New Zealand and colorectal oncologist Dr Chris Jackson said given New Zealand's high rates of bowel cancer it should be on the mind of every doctor in people who have bowel symptoms.
He said access to colonoscopies is "an issue" and when the national bowel cancer screening programme is rolled out over the next three years there will be "an explosion in the need for colonoscopies nation-wide as a result".
Jackson said it was harder to diagnose bowel cancer in younger patients because 90 per cent of cases occurred in people over the age of 50 and for younger people bowel symptoms were attributable to other disorders like IBS.
"...so it can be a difficult diagnosis to make but quite clearly people under 50 still get bowel cancer and so it needs to be sorted out and investigated if there is a good suspicion of it."
New mother Fiona Cullen,39, from Ashburton, knows the heartache of a mis-diagnosis for bowel cancer. She is about to have surgery to remove a section of her lower bowel after chemotherapy to shrink the tumour.
Responding to Cullen's letter of complaint Canterbury District Health Board said an increase in demand for the service in recent years "far exceeds our capacity to provide this service for everyone".
"This means that all referrals have to be triaged and some people who could benefit from a procedure are declined, sometimes with adverse outcomes."
Documents obtained by Stuff show the CDHB received 2464 referrals for a colonoscopy between August 2015 and July 2016 and of those, 170 were declined.
A Ministry of Health presentation in August showed a national short-fall of over 2300 colonoscopy procedures in 2015-2016 for those with symptoms of bowel cancer.
The national bowel screening programme for the 60-74 year age group to be rolled out over the next three years, will push the total short-fall in capacity for the procedure up significantly.
Bowel Cancer New Zealand spokesperson Dr Sarah Derrett said the organisation has been advocating for an increased capacity for colonoscopies since 2010.
"It is very concerning - because people's lives are at stake - just how long planning some real traction in terms of addressing that short-fall in the workforce is taking."
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- Sunday Star Times