Women with ovarian cancer ‘dying because GPs fail to spot signs’

Well, this was a fun read…not! Oh and by the way…you women who are reading this who have NEVER had cancer…well, watch for the signs girls. I didn't think I'd ever have it either, and BLAM…wake up to a new world…pay ATTENTION here please. I don't want anyone to go through what I went through. Watch for the signs. Look out for your own health. Don't mess about.  Scarily, your GP may not realise what's wrong – you need to know the signs yourself, and you need to ask the right questions..as in: "can you send me for a scan?". Like…NOW!! [by the way, 'silent' killer?? pah!!]

"Women with ovarian cancer are dying because GPs are failing to detect the early signs of the disease, a study suggests today.

The disease, known as the “silent killer”, is the fifth-most common cancer in women, with 6,800 new cases each year in Britain and 4,300 deaths. Many GPs believe that it has no obvious signs in the early stages.

Researchers writing in the British Medical Journal (BMJ) say that family doctors may be overlooking a main symptom because it is not included in the guidance for urgent investigation.

Women who report a distended abdomen need to be seen urgently for tests, they say. Yet the guidance says that women should be referred only if they experience abnormal bleeding or if they have a palpable mass that is not obviously fibroids (benign tumours).

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Survival rates for ovarian cancer are above 70 per cent if it is caught early, but only about one in three is given the diagnosis in the early stages.

The research, carried out by a team from the department of community-based medicine at the University of Bristol, involved 212 women, all aged over 40, from 39 general practices in Devon. They were compared with more than 1,000 healthy women acting as a control group.

The researchers found that many of the women had told their GP about their symptoms, with the most common being abdominal distension, pain, bloating and loss of appetite. But some women reporting distension, urinary frequency and pain waited at least six months before a diagnosis was made.

Willie Hamilton, the consultant senior lecturer who led the study, said: “Many of the symptoms described by women...include fatigue, abdominal pain or subtle changes in urination or the bowels. With those, quite simply ovarian cancer doesn’t spring to the GP’s mind. Unquestionably, some women have their cancer missed and have to return, sometimes repeatedly.

“Ovarian cancer is not a ‘silent killer’ — it is just not being heard.”

The study comes as figures also released today show that ovarian cancer rates are falling, which has been attributed to more women taking the Pill, which can protect against the disease.

The decreasing use of hormone replacement therapy could also be a factor in the drop of nearly 20 per cent in the cancer among women in their 50s and early 60s since 1998, Cancer Research UK said. Although the number of diagnosed cases has not changed significantly, the population has increased, leading to declining rates, the charity said.

Dr Hamilton added that fewer than 1 per cent of women with any of the symptoms in the guidance for urgent referral would have ovarian cancer. Yet, for abdominal distension, this figure was more than twice as high.

“A 2.5 per cent risk of ovarian cancer with abdominal distension clearly warrants investigation,” the report says. “This symptom was also reported by over a third of women [with the cancer].”

Annwen Jones, the chief executive of Target Ovarian Cancer, said that a recent study by the charity found that 80 per cent of GPs thought wrongly that women with early-stage disease had no symptoms.

Ovarian cancer can run in families, and more than 50 per cent of cases occur in women over the age of 65. But more than a third of women with cancer waited more than six months from first visiting their GP to getting their diagnosis, she added.

The five-year survival rate, at 30 per cent, is one of the lowest in the Western world.

A spokesman for the Department of Health said: “We recognise that we need to improve awareness of the signs and symptoms of cancer among the public and GPs and that is why we launched the National Awareness and Early Diagnosis Initiative in November 2008. The BMJ study, which looks at cases of ovarian cancer diagnosed before the initiative was launched, supports the need for action.”

And, just for your interest – I never had any symptoms apart from extreme exhaustion, urinary frequency and distended belly and my periods went from 6 to 10 days…no bowel problems, no pain at all. So girls, get OUT there – if you have any symptoms, get your GP to get with the programme – better to have a scan and the worry of what 'might be', than the horror of what can be…

in support of the NHS

I am not very good at following the news or understanding much about politics…actually, that's an understatement – I don't follow it at all – it sort of leaks into my head by osmosis sometimes. And it's usually bad. So I try to ignore it. I have enough problems of my own and don't particularly want to get involved in more or watch a bunch of people lie through their teeth on TV. It just makes me furious. So what's the point? This probably makes me an airheaded ignoramus in the eyes of many. Well, there you go. But at least I can be a cheerful airheaded ignoramus.

Therefore I am probably miles behind [and ill informed] about what is going on here, regarding the huge debate going on in the States; which appears to be: 'What To Do About Our Deplorable Health System'.

And the bits of information I have gleaned from the women I know over there have indicated a sort of demented hysteria of mud slinging, lies and misdirection. So when someone sent me a link about supporting the NHS today, I clicked it instead of deleting it. I was amazed to see a video of what is apparently about one of our own politicians deriding the British NHS system. What?

The only conclusion I can draw is that he has either never been very ill, or that he can afford private medical insurance. [most likely paid for by his 'expenses'? along with a trouser press or two…]. Well, apart from the dreadful 'bias' in his tiny little brain + the fact that his key political influence was Enoch Powell - is that a disease?? er...probably.

And, naturally, it made me FURIOUS! See, told you…I should absolutely NOT follow the news.

So, I sent the information they asked for, it is [and I quote] "to help Americans consider their own healthcare choices with facts, not fiction about our system". Good idea. Facts are always quite handy.

See the link here.

Last year I had Ovarian Cancer. I had ALL my excellent treatment, scans etc FREE. I didn't have any financial worries to add to my health worries. I didn't have to beg an insurance company for my life. I didn't have to fill in hundreds of forms, make hundreds of phone calls or remortgage my home. The treatment was first class, and I am now in remission.
If I'd had to find the money to pay for even a part of my treatment, it would have been very difficult, not to mention the additional stress I and my husband would have been under.
I am astounded that anyone's survival could be dependant upon whether or not an insurance company 'feels like' paying for it. No thank you.
I am grateful every day for the NHS - no, it's not perfect - but it's certainly better to have an imperfect system, than to die because you can't 'afford' treatment that may save your life.

the tv interview…continued

sorry about that – I was just suddenly in 'sleep' mode in the middle of blogging. Went directly to bed!

So, where was I? Ah yes, the TV thingmy. A few weeks ago Amanda Hayhurst from Hayhurst Media called me. Hayhurst Media are the PR company for Ovacome. She asked me if I would be willing to take part in a televised programme about women's health by Tern TV, which would include a section about ovarian cancer. She knew about me from Ovacome, as they are revamping their web site, and I am on the list of previous interviewees. Of course I agreed. Any publicity for this damn cancer may help even ONE woman not to go through what I did. So, "yes" was the resounding [and rather airheaded] reply.

A chap called Keith McCormick called me the next day, and did a sort of 'interview' over the phone…I assume this was to ensure they weren't going to be interviewing someone who couldn't speak. It was great – firstly because the Keith McCormick person had a lovely Irish accent [oops!], secondly because he was extremely emphatic. His follow up email was delightful – he said "But even to speak to you and for me personally to get my head around this type of cancer is really beneficial." That was pretty cool.

Then I had a call from a lovely woman with a wicked Scots accent. She wanted to call round here at 6.00 on Wednesday to do a filmed interview. Eek! That sort of brought it home [I would be on camera?? aaargh] but she sounded nice so I agreed again.

Wednesday arrived, and [this is bad – chemo brain again – I can't remember if she was called Lorraine or Gillian! grr!].  I am sure she won't mind. [but I do!]. Anyway, she interviewed me in our lounge, and it lasted for an age [3 hours?] – afterward I was convinced I talked 'too fast', 'too much' blah blah – and I surprised myself, as at the end I was in tears [ugh – hate that] – as she asked me 'why do you think ovarian cancer should be brought to the public eye more" [not her words, but the essence of what she wanted to know].

I thought of  Grace or Vicky or Jenny going through what I went through last year. It made me feel sick. It upset me a lot. But we managed to trundle through to the end of the interview relatively sedately, so not all bad.

I am one of many women they are interviewing in the same way – SKY TV makes the end decision about what they will or won't use. So it may come to nothing, but at least I know that SOMEONE who has had ovarian cancer will be on the programme – that's the best. Someone will be telling other women, who [like I was before I had it] are completely ignorant of the fact that your annual smear test does NOT protect you from all gynaecological cancers. Only cervical cancer. Ovarian cancer? Ha. No. Unfortunately the annual MOT doesn't test for that. And there is no test for it.

So we need to be like the women who have had breast cancer – we HAVE to advocate our own disease. We HAVE to bring it to the public eye – we HAVE to try to take charge here and make sure other women know about this. The sad thing is that many women who have ovarian cancer don't live long enough to be advocates. This is what we need to change.

So thank you Tern TV for taking the time to interview me. Thank you for bothering to include ovarian cancer in the programme. I know TV programmes are made to make money – I am not naive – but if one can make money whilst helping people to SURVIVE…well. It can't be bad can it?

I will update ad and when I know what's happening.

Here is Grace after we had finished – allowed to look through the camera – most amusing for a 5 year old…she said I didn't look "too weird"…heh heh

oh and the tv…

but you have to wait for that one! heh heh

and one more!!

I mentioned Annabel in my last post. We have been chatting on-line since not long after my diagnosis. Annabel was diagnosed around the same time as me. She was only 27, and just wanted to have children of her own.

Ovarian cancer took that dream away from her. It devastated her. We went through hell together last year, but I truly believe her hell was worse than mine – I have two step daughters, and a grand daughter. I wasn't bothered when they hacked out my womb. Not in any way that mattered long term in any case. As you know, my main worry was the massive scar on my belly – I didn't have to worry about one on my heart. How facile that seems now in retrospect. But, at the time, that seemed so awful. Now I know better.

Annabel was broken hearted. But she made it. And happily, we met on Tuesday this week! This was great. We have messaged on Facebook – texted one another, but never met – and meeting her was like meeting an old friend. Which, in a way, she is. She arrived waving beautiful flowers, a fluffy toy for Grace [the 5 year old temporary resident] and an M&S lunch! Way to go!

It was as if I'd known her for years. We only had a few hours but we filled it up with non stop chattering – and I was so sad to see her go. I really could have spent another 2 days talking with her – she would have fitted right in last weekend.

Next meeting of the OC girls is going to be in Bristol – and hopefully ALL the UK lot will be there. Even our Welsh woman ;o)

We are starting to plan it now!