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).

Related Links

• Risks of breast cancer drug Tamoxifen

• Hospitals 'need special chemotherapy teams'

• Screening may be key to beating ovarian cancer

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!

a meeting long delayed

wow. last weekend was amazing! at long long last I got to meet two of the many OC girls that I've been talking to for ages on the www. Tracey and Rachel.

The first person I got in touch with through my blog after I was diagnosed was Emily. She has her own blog, and after reading it, I felt myself lucky. I got in touch. Unfortunately [or fortunately, depending on your point of view, Emmers couldn't make it as she has a new baby – our 'miracle' baby!]. But I WILL meet her sooner rather than later. She was a mainstay to me when I felt utterly alone. NOT due to lack of support from family or friends, but just because I was the only one who had cancer. That alienates you. And you need to talk to someone who has the same thing as you.

I met my second friend through Ovacome [that would be you Tracey], although I have met a LOT of women with or who have had ovarian cancer through my blog, Tracey was there almost from the get-go too. She just messaged me saying 'if you need a hand, I am here'. No pressure at all – just a friendly hand reached out. Tracey and Emmers were my first contact with other women who knew exactly what I was going through, as they had been through it [and worse].

Annabel was diagnosed at around the same time as me, and we were a sort of foursome, in that we chatted and swapped advice, horror stories and the terror of dying of cancer.

Rachel I met through Emmers a while later – she had OC at 17. She is an amazing person. So young, and yet so strong.

But honestly, this weekend, when we all got together, you'd never have guessed any one of us had had cancer – we had such fun. I met Julie just after my last chemo in August 2008. She came round once a week and helped me get my strength back. And inspired me, as she has had OC too [we are like a bloody plague!], yet she still does football reffing, takes circuit training classes, and is as fit as a fiddle.

And of course, Georgie – Claire's mother, whom I met quite by accident, as Claire saw me in the local paper and messaged me on Facebook. Claire lives about 20 yards from me!

So, we got together in Devon, Georgie, Rachel, Tracey, Julie and I. Plus Claire, her lovely family and Aj [the chef!] for a brilliant weekend of chatting, eating, drinking and laughing. It was so amazing.

I am so grateful for my friends – all of you who are not mentioned here, don't worry, I haven't forgotten you – it's just that I would be making a three hour post if I mentioned you all! :o)

Here are a few pics of the weekend.

The Girls! From left to right: Georgie, me, Tracey, Julie and Rachel.

Julie and Tracey – cracking up…this is sort of Tracey's normal expression...laughing!

Julie, Tracey and Rachel having hot chocolate at the pub…the English Riviera is COLD!!

Saturdays cream tea. Lovely! Georgian Tea Room at Topsham is highly recommended!

life is good

this is an old post – which I forgot to post…chemo brain…so I am posting it now. Why not? It was in response to a question from a fellow blogger. I wrote it, then forgot it. And I just came across it in my files. I am rather glad I did, as it's a cheery post – those are always good!

I am SO glad  my head is joined at my neck or who knows what would happen?

__________________________________________________________

eee – what a week – so normal!! Woop woop for normal!

Still have the stupid pain in my side but I am sort of hoping that's an adhesion and sort of thinking well bollocks to whatever it is i need to have some fun. And we've been having fun – off out to dinner at Judy and Rick's [she has the MOST amazing view from her place] – Rick is bonkers and fits well with Aj – they went for a tandem bike ride?? No comment…horrifying thoughts of lycra shorts come to mind; they arrived back with their hair on end having zoomed down the hill at a zillion miles per hour. Then a bbq here this evening with Julie, circuit training, gardening [and that means climbing around on ladders and in trees etc no "dead heading in a cute frock" in THIS garden].

So, POD, things are good. Life is still a little scary – well, doh…ovarian cancer doesn't let you rest does it [the stats just keep you on your toes – thanks thoughtful scientist types…] and it doesn't let you be positive unless you force yourself – I force it, and the article about the woman who was 20 years out…well what can I say?? Just YAY!

All life is good – I am appreciating it more every day

some poetry…

Khalil Gibran, age 15

Khalil Gibran was a Lebanese artist, poet and writer. He was born in the Christian Maronite town of Bsharri in modern-day Lebanon in 1883; at the time, Lebanon was a Syrian Province of the Ottoman Empire. As a young man he emigrated with his family to the United States where he studied art and began his literary career.

Khalil Gibran is the third bestselling poet in history after Shakespeare and Lao Tse. His poetry is beautiful and his words can be searing. While most people know Gibran only as the author of "The Prophet", he wrote seventeen books, nine in Arabic and eight in English.

Khalil Gibran died of liver cancer on April 10, 1931. He was forty-eight years old. The people who attended his burial service said it wasn't a time of mourning, but of celebration.

I came across these two quotes today, and I thought I'd share them with you. I am sure they will have meaning for a lot of us.

"Out of suffering have emerged the strongest souls; the most massive characters are seared with scars."

and

"a word I want to see written on my grave: I am alive like you, and I am standing beside you. Close your eyes and look around, you will see me in front of you ...."

≈ Kahlil Gibran

a disaster averted…

yay for me. this week I was heading for another of those 'chaos' attacks. You know when you just want to scream, cry, smash stuff, and generally behave like a maniac? well. Maybe you don't. Maybe you do. Whatever.

What happens is this. I wake up one morning feeling odd. My skin is itchy and doesn't fit. My brain is all over the place. My legs jump. I sleep even less than usual [this is bad, as I am an insomniac since chemo anyway]. Over the next few days, odd becomes 'agitated'. Agitated becomes fraught, and fraught becomes extremely stressed. And the worst thing is – I don't know WHY. Plus I am exhausted with it.

I've had four of those attacks [I will call them 'attacks', as that's what it feels like – I am being attacked by my own brain] since the chemo. I have felt dreadful after each one, as every time, I behave badly, and basically abuse [this is hard to admit] my beloved husband. He takes all the grief for everything & anything that is upsetting me. It's not physical abuse – it's verbal – and it's not good. And he just accepts it and deals with it and saves me every time. His feelings must be hurt, but he allows me a huge latitude since I had cancer. He forgives me everything and anything. He is there to hug me better, no matter what I say or do. You can't ask more than that.

But this is not fair, and not right.  And after the last one I decided this is 'enough'. I can't stand it any more. If I am going to batter someone, it definitely should NOT be my husband. He is the best support I have. What is wrong with me? I had to find a way to deal with this. And, yay, I have. [no, I didn't go and murder my neighbours...although I would probably be forgiven if I did!].

Well. Nothing is wrong with me at any rate. Apparently this is a 'norm' for cancer patients [gosh, we learn something every day eh? It's called 'cancer brain' – FFS!! isn't chemo brain quite enough?!]. And I get out of control. I get so frightened I can't think. I don't even know what is frightening me. I have no idea why I have these stupid 'moments' [isn't that cute? I'm having a 'moment', get away or I might kill you type thing – hmm…'moment' is probably a misnomer].

But, I just managed to hang on this time. Through sheer force of will I sat and watched a film [it was crap]. I drank lots of water. I went to bed early. I didn't get into the wine at all – I read my book [which is also crap by the way]. And I woke up this morning feeling great. The thing is, I am not sure why. Is it because I managed to control the 'attack' or is it because I didn't HAVE an attack?

Does it matter? No. What matters is that I know because I managed to control myself this time, there won't be a next time. Which means I am in control of one more thing. Which means I am one step closer to normality.

What IS normality after having had cancer?? Who knows. But it certainly isn't the norm I was used to before I had it. It's different. And it's new. I hate change so for me this is hard. But at least now I know I can cope with myself. A good start right?

thank you Ovations…from the bottom of my feet!

wow!! A while ago I came across the Ovations for the Cure site, which has a blog and a ton of information for women having to deal with ovarian cancer. The girls who run it are constantly busy doing stuff to raise both awareness and funds. And they are so friendly!

Find them on Facebook here. And there's a link to their site on my  list down the right hand [see: ''blogs I follow'' & ''Places to find info and advice''].

Anyway, in addition to all the other stuff they do, they have the Happy Feet program – and today I got my very own pair of happy feet! Which I am now wearing. These slip-ons, jewelled with Swarovski crystals are for women having chemo and are also free to survivors as a way of helping their road to recovery be more comfortable. And they DO make you feel rather special. Yay me for surviving!

They are designed by Stuart Weitzman, see below. Sorry about the actual feet inside them ;o)

And in the same package there is a bracelet which fits my ankle rather well, and a beautiful little badge and an awareness car sticker, both of which you can buy here. It's like Christmas today!

Look – even underneath they are cute! Dogs!

 

Gorgeous!! Thanks so much girls, I love them to bits!

"You can sponsor a pair of happy feet today too. Ovations asks for your donations to sponsor Happy Feet recipients, as requests are coming in every day. Happy Feet is a self-funded program, so we appreciate your support. Sponsor a pair of Stuart Weitzman designer ‘Happy Feet’ for $100, which will gift an ovarian cancer patient undergoing treatment. All sponsors will receive a special acknowledgement on the Ovations for the Cure website. Help us put some sparkle in the steps of these women—sponsor Happy Feet today!"

spreading the word…

this is cool! I have been rather honoured with being the Guest Post this week on Dennis's blog, 'Being Cancer'. 

As a matter of interest, his August Book Club Selection; "The Light Within", concerns a woman with ovarian cancer and her female physician. 

He has also added a number of bloggers to the ovarian section [scroll down to it]. I found lots of my friends there :o)

Dennis' blog is quite a mine of information – not just for women with ovarian cancer; as far as I can tell, there's something about just about every type of cancer on there. He has a blog roll, 'Cancer Blog Links', which contains hundreds of blog links grouped by disease type. So you can hook up with other people that are going through the same thing as you are, perhaps getting advice and support from survivors or caregivers.

This is just a quick thanks Dennis. Your site is excellent, your own story is so encouraging  – and anywhere I can raise awareness of ovarian cancer, I am only too happy to be there! I rather wish I hadn't cursed in the middle of the post though…;o)

interesting article

thanks Mary. see here for a video.

Flawed gene link to ovary cancer

Scientists have identified a genetic flaw which can increase the risk of ovarian cancer.

Over 4,000 UK women die from ovarian cancer each year. The international team of researchers, led by UK scientists, looked at the DNA of 17,000 women for their study.

In Nature Genetics, they said carrying two copies of the flaw increased the chance of cancer by 40% - around 15% of UK women have both copies.

Cancer experts said it was an important discovery which could help manage women who were at increased risk.

"There is now a genuine hope that as we find more genetic variants, we can start to identify the women at greatest risk"

Dr Simon Gayther, researcher

OVARIAN CANCER

It is the fifth most common cancer in UK women, affecting 6,800 women per year. Five out of every 100 cancers diagnosed in women are ovarian. A family history of the cancer, breast cancer and being infertile or having fertility treatment, are all known to increase risk.

Ovarian cancer is the fifth most common cancer in women in the UK with around 6,800 new cases diagnosed each year in the UK. This leads to around 4,300 deaths each year.

The BRCA1 and BRCA2 genes, which cause breast cancer are already known to significantly increase the risk of ovarian cancer - but faults in these genes are rare and probably cause fewer than 5% of cases so scientists have been looking for other genetic faults which could help explain inherited risk.

The researchers, led by scientists based at the Cancer Research UK Genetic Epidemiology Unit at the University of Cambridge and University College London (UCL), searched through the genomes of 1,810 women with ovarian cancer and 2,535 women without the disease from across the UK.

They analysed 2.5m variations in the genetic code and found genetic "letters" - called single nucleotide polymorphisms (SNPs) - which when spelt slightly differently increase ovarian cancer risk in some women. It is the first time scientists have found a SNP linked uniquely to risk of ovarian cancer.

Everyone has 23 pairs of chromosomes, with one of each pair inherited from each parent. This SNP is located on chromosome nine.

The risk of developing ovarian cancer for women carrying the variation on both chromosomes is 14 in 1,000, compared with 10 in 1,000 for those who do not. Carrying one flawed variant increases the risk to 12 in 1,000.

Scientists confirmed their finding after working with the international Ovarian Cancer Association Consortium and examining more than 7,000 more women with ovarian cancer and 10,000 women without disease.

Dr Simon Gayther from UCL, who worked on the study, said: "There is now a genuine hope that as we find more genetic variants, we can start to identify the women at greatest risk and this could help doctors to diagnose the disease earlier when treatment has a better chance of being successful."

Dr Andrew Berchuck, head of the international Ovarian Cancer Association Consortium steering committee, said: "This study confirms that ovarian cancer risk is partly determined by genetic variants present in a large number of women.

"This initial discovery and others that will likely follow in the future lay the groundwork for individualised early detection and prevention approaches to reduce deaths from ovarian cancer."

Dr Lesley Walker, director of cancer information at Cancer Research UK, added: "This is an important discovery.

"This research paves the way for scientists to discover even more genes linked to ovarian cancer and could lead to new approaches to treat or prevent the disease. Crucially it will help doctors manage women who are at increased risk."