THIS IS AN ARTICLE THAT I SHOWED S. WHICH MADE HER CRY . IT WASN'T THE PURPOSE TO DO THAT BUT TO SHOW HER THAT THIS EXACT MIRROR IMAGE OF HER SITUATION WAS SURVIVABLE . AND FROM 2011 TO 2016 NOTHING HAS CHANGED . ARGGGGGGGGGGGGGGH !!
The £20 blood test that could have shown my bloating was cancer
By SUZY NORMAN ( Daily Mail online )
3 May 2011
We’d been married for six years when my husband Phil and I decided it was time to start a family. The timing felt right. I was 34, we were both in secure jobs — as a writer and teacher in my case, while he works as a graphic artist.
After six months of trying to get pregnant, I visited my doctor. I’d been suffering from persistent pelvic pain for nine months and had a swollen stomach. Even though I was on a diet, I’d been piling on weight.
My GP sent me for tests for sexually transmitted diseases, but the results came back negative and I was sent away thinking it was just one of those things.
Six months later, just after Christmas, I went back to the GP with increased abdominal pain. This time he prescribed Fybogel powders for Irritable Bowel Syndrome. He didn’t send me for a scan and, not suspecting anything serious, I didn’t ask him for one.
The Fybogel had no effect and I returned three more times over a period of five weeks, desperately seeking help. Eventually, my GP said I could have an ultrasound if the pains persisted.
By this time, my back ached constantly and movement was painful. I hadn’t conceived, but I looked like I was nine months’ pregnant. I was breathless after walking just a few yards.
I decided to take action. More than a year after the pain began, I admitted myself to A&E at the Royal London Hospital. A blood test was promptly arranged to test my levels of CA125, a protein known to indicate ovarian cancer. A normal CA125 level would be below 35.
Mine was 665. A consultant held my hand and broke the news.
I felt like the ground had been pulled from under me. I was devastated and angry that I was being treated so late.
Before my diagnosis I’d never considered ovarian cancer. I was only 34 and I thought it was something old women got.
Three weeks later, in March 2009, I was transferred to Barts Hospital in London, where I was told I’d need to have my ovaries removed.
I fought back the tears and tried to be grateful that even though Phil and I would now never have a child of our own, the cancer had been caught in time to save my life.
During the operation, the surgeons found two large tumours — one was 14 cms in diameter. They were taken out and examined while I was still under anaesthetic and judged to be borderline, meaning chemotherapy wouldn’t be necessary. However, I was called back a couple of weeks later to hear a fuller analysis from my surgeon.
He said that, in fact, the tumours had been so large, they had pressed down on the womb, spreading the disease into the rest of my body.
So I would now need a full hysterectomy and three months of chemotherapy.
Phil was by my side every step of the way. We were furious that our chance to have a baby had been snatched from us. At one point, I offered him the chance to leave and find someone else, but he told me he wanted to stay whatever.
However, we both shared a desperate wish that I’d had that simple £20 test sooner and that it had been taken by my doctor — not hastily administered in hospital, when the cancer had already spread so extensively.
Last week, the Government health watchdog NICE issued guidelines recommending that all doctors test patients with symptoms of ovarian cancer for CA125 levels.
The move was widely welcomed by cancer charities, which hope that better testing and earlier diagnosis can improve Britain’s shameful statistics for ovarian cancer — our survival rate is one of the lowest in Europe.
Cancer Research UK says 6,537 women were diagnosed with ovarian cancer in 2008; 4,373 died that year.
Late diagnosis is the main reason for this, says Frances Reid of the charity Target Ovarian Cancer.
‘More than three-quarters of women are diagnosed once the cancer has already spread. Our study found a third of women waited six months or more to get a correct diagnosis,’ she says.
‘50 per cent of women with early stage ovarian cancer and 80 per cent of women with advanced stage will have an abnormal CA125.
‘While the test isn’t a conclusive way of detecting ovarian cancer, it’s a cost-effective method of helping women. After the test the GP can consider whether an ultrasound of the pelvis and abdomen is needed.’
Earlier testing could also save some women being stripped of their fertility.
Young women who have early stage, low grade cancer may only have one ovary and fallopian tube removed. Most women who are diagnosed with stage one to stage three ovarian cancer will have a total hysterectomy — my cancer was stage three.
Part of the problem is that GPs only see an average of one case of ovarian cancer every five years. As a result, the condition is often misdiagnosed for more common conditions such as IBS, urinary infections and diverticulitis.
‘If symptoms are experienced more than 12 times a month, a GP should initiate tests,’ says Reid.
‘It’s also important that women and doctors know that IBS rarely develops in women over the age of 50.
‘If they or their GP think they have suddenly developed IBS, then they should test first for ovarian cancer.’
Doctors don’t know exactly what causes ovarian cancer. One in ten cases are thought to be hereditary and advancing age and lifestyle choices, such as smoking, are also thought to be factors.
There was no inherited cancer in my family, which made my diagnosis doubly shocking and confusing.
Like most women, my awareness of the symptoms of ovarian cancer was poor. I would never have associated diarrhoea, pelvic pain and putting on weight with cancer.
I was always under the false assumption that weight loss was more synonymous with cancer than weight gain — but that’s not necessarily so.
However, Target Ovarian Cancer stresses that CA125 tests are not foolproof and the best defence is for women to be fully aware of the symptoms and not to be put off returning to their doctor if they are still worried.
‘Women often play down symptoms, believing them to be unimportant — not wishing to bother others or disrupt their routines,’ says Reid.
Although I didn’t have any idea the symptoms were ovarian cancer, I didn’t ignore them and did seek help, time and time again.
I am haunted by the possibilities of what could have been. A simple blood test may have meant IBS was ruled out much earlier. Surgeons could possibly have saved my womb.
And keeping my womb would have left the door open for me to consider applying for a donor egg. I may have had a chance to give birth.
Now, sadly, IVF is not an option. My hopes of having a biological family have been dashed.
I feel enraged with my doctor for missing something so serious for so long. I changed my GP immediately and now have a young, efficient doctor who I’m pleased with.
Happily, Phil and I are investigating adoption and are excited about helping a child. We are pursuing a new and worthwhile way to create a family, but this option has come at a great cost.
It has taken me a couple of years to grieve for my lost fertility. While I’m lucky to be alive, this has been a distressing journey for my husband and I.
I live with the knowledge that the cancer has a one-in-four chance of returning. With earlier intervention, this prognosis could have been brighter.
My CA125 levels are now regularly monitored by Barts, which gives me peace of mind.
Still, I cannot help but wish that routine blood screening had been in place sooner.
targetovariancancer.org.uk, eveappeal.org.uk
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