JulieJ
(member)
29/12/2008 13:59
Eve Appeal for Ovarian Cancer - please read to save your life

Hi, I'm sure lots of people have read the article about raising money for the Eve Appeal for research into Ovarian Cancer, and some may have checked the Eve Appeal website http://www.eveappeal.org.uk/RVEd0e5faa0b17442b9974e722feef5cd04,,.aspx

Although it's extremely heartening that the Appeal has a strong focus on improving early detection, it's a shame it did not give more details on how to carry out what is possible these days already.

As you will all know - and the Eve Appeal makes clear - the hideous paradox about cancer is that it is usually curable in early stages, but not in late stage, and that, with dreadful irony, early stage cancer seldom has any discernible or suspicious symptoms. By the time symptoms show - or, worse, are actually taken any notice of by GPs - the cancer is usually at late stage.

For that reason, screening is essential. Although I agree that screening methods for ovarian cancer are not 100% as yet, and there is room for considerable improvement - which the Appeal is trying to achieve, and all, all credit to it - I would all the same say categorically that using the screening methods currently available CAN detect ovarian cancer at early stage - or even before it starts.

Screening is very simple. A blood test will show the CA125 marker to be present or absent, and whilst some people can have the marker, and not have OC, and some have OC and not have the marker, my recollection is that around 70% of OC does show the CA 125 marker.

Your GP should be able to do the test with little trouble, but if they object, or tell you you're being neurotic etc etc, a private GP will charge around £85 (that's what I was charged earlier this year).

Screening comes in two types - surface abdominal, and transvaginal. The former is like having a scan to see your baby when you are pregnant. The latter goes inside your vagina. Please have the latter, as it is more accurate and more detailed.

Again, your GP should send you for a NHS scan, but if they won't, mine cost me £290. It was carried out by a foremost expert, and showed clearly that I had a cyst on my right ovary that was NOT a functional (ie, harmless egg sac) cyst, but a borderline cyst, with some abnormal cells inside. They were not cancerous, but there is, again as I recollect, a 7% chance they will turn cancerous at some stage. As a result, I shall be having a hysterectomy that will remove my (menopausal) womb, tubes and ovaries. I am not waiting for this cyst to turn cancerous.

Such scans therefore CAN detect cancer at pre-cancer stage and early, Stage I. Perhaps not always, BUT the blood test and scan MASSIVELY improve your chances of early detection of OC, and therefore EVERY WOMAN should do them as a matter of routine, especially from the age of around 40 onwards, when the OC stats start to climb.

As the Eve Appeal makes brutally clear - OC is a deadly killer because it is SO asymptomatic in its early, curable stages:

"Most women who develop this cancer do not have obvious symptoms until the cancer has spread outside the ovary to other organs, such as the bowel. By this time it is very difficult to treat effectively.

"Over 85% of women in the UK suffering from ovarian cancer will die from the disease when it is detected at the most advanced stage.

"About 95% of women will survive when the disease is detected in the early stages."


We only have one life. Don't lose it unnecessarily, because you don't take the precautions that are already available.

ANYONE whose cancer - of any kind - was detected at late stage, when it had become incurable, would give all they possess to roll back time, and be given the chance to take the precautions that are there to detect their cancer much earlier, when it was far more curable - even if their GPs think they are being idiotic.

Shamefully, FAR too many GPs are simply 'cancer-unaware' and don't bother to think you MAY have cancer, or tell you what to look out for, or fob you off with a 'there there, I'm sure it isn't cancer, don't worry your little head about it'. Which is odd, really, since a quarter of the UK population dies of a disease which GP's tell you you haven't got.....

So, please, all you 40-somethings and older out there, get your CA125 blood test done, and get your transvaginal ultrasound scan done. It could save your life.

FIND CANCER BEFORE IT FINDS YOU.
And Live.


All the best, Julie


Snowy1066
(member)
29/12/2008 15:13
Re: Eve Appeal for Ovarian Cancer - please read to save your life

Dear Julie, this subject is very close to my heart, as I recently underwent a big op for an Ovarian Cystadenoma, which was border line with rare cells.

I too had a hysterectomy, cystectomy and omentectomy in April 08, and Julie if you need to talk please feel free to pm me

I totally agree how easily this cancer can be missed, and don't do what I did and not go for smear tests, or be fobbed off that it is IBS.


issi
(member)
30/12/2008 09:41
Re: Eve Appeal for Ovarian Cancer - please read to save your life

Thank you Julie. I have printed out your post and shall be asking my GP what she can offer in terms of screening. My sister's sister-in-law died if this two years ago at the age of 50 so it is a subject which is close to my heart. Your post is very informative.

blossom97
(member)
30/12/2008 10:29
Re: Eve Appeal for Ovarian Cancer - please read to save your life

I am posting on this thread to keep it near the top as it is a subject close to my heart.

My mum was always concious of her weight and kept trim and fit,. When she started to put on weight for no reason, she visited her GP, who fobbed her off saying it was her age etc.

She went to the GP three times and was never sent for a scan.

After about two months, she was in work (admin in a hospital, luckily for her) when a consultant gynaecologist walked through the door, took one look at her swollen abdomen and sent her straight for a scan Youv'e guessed it..she had ovarian cancer.She was given a hysterectomy and chemo.Unfortunately she died of secondary liver cancer.

My dad (bless him ) did not want to take action against the GP who wrongly diagnosed my Mum.This particular doctor is the mum of a friend of my daughters.She has visited my home and I have been to hers...She has NO IDEA who I am and I would not tell her.What good would it do, my daughter and her son get on really well.It would break my dads heart to drag it all up, too.So I meet her and smile sweetly, thinking how much her incompatance devastated my family.My mum has 7 grandchildren, none of whom she ever met.


blossom97
(member)
30/12/2008 10:38
Re: Eve Appeal for Ovarian Cancer - please read to save your life

KEEPING THIS AT THE TOP!

Chestnut
(member)
30/12/2008 11:14
Re: Eve Appeal for Ovarian Cancer - please read to save your life

I know several people who have had this disease, some with good outcomes and others not. Raising awareness can only be a good thing. One of these days access to routine screening will be common place just as cervical and breast screening are today. I hope it comes sooner rather than later.
Rainbow.x


OzzieKez
(member)
30/12/2008 11:35
Re: Eve Appeal for Ovarian Cancer - please read to save your life

Thanks for drawing this to our attention. I have a transvaginal scan every 12 months or so. My GP is great about referring me for this. Keep your scans, they can be very helpful for future reference.

Ashbee
(member)
30/12/2008 11:59
Re: Eve Appeal for Ovarian Cancer - please read to save your life

Thanks for raising this issue. I knew it was considered a silent killer but as I don't know anyone who has had the disease I haven't felt compelled to ask for screening. In my experience, screening isn't offered widely for anything these days when budgets are so tight and I know that is wrong. More than 20 years ago I was diagnosed with PCD but as I already had children it wasn't considered worth worrying about. I didn't realise until quite recently that I should have been monitored more closely - it wasn't offered and I didn't ask. Isn't this the case with all sorts of diseases? Thank you for this thread...

Glitterqueen
(member)
30/12/2008 16:22
Re: Eve Appeal for Ovarian Cancer - please read to save your life

My own mum died of this dreadful cancer eight years ago. As you so rightly say there were no symptoms until it was far too late. Despite this history I still struggle to get my GP to refer me anywhere - I've never had the blood test though I have had scans - the last about a year ago.

I'll certainly be checking out the website you mention and thank you for bringing this important subject to our attention

xx


Ashbee
(member)
30/12/2008 17:08
Re: Eve Appeal for Ovarian Cancer - please read to save your life

Glitter - why does your GP make screening so difficult? You have a family history or doesn't it matter for this disease?

RunGirl
(member)
30/12/2008 17:58
Re: Eve Appeal for Ovarian Cancer - please read to save your life

Julie, thanks for this post and raising awareness. Earlier this year I was diagnosed with a cyst and had the cyst and an ovary removed. I was fortunate enough to be able to go privately when I knew something wasn't right, and the first thing the consultant did was the CAT125 blood test to rule out ovarian cancer. It was a sobering moment, as I could easily see how women could ignore the symptoms for a long time. Maybe one day this testing will become more routine - we live in hope. I have supported a breast cancer charity for many years after an aunt suffered from it, but have switched my regular donation now to ovarian cancer as this silent killer gets so much less publicity.

Glitterqueen
(member)
30/12/2008 19:01
Re: Eve Appeal for Ovarian Cancer - please read to save your life

Quote:

Glitter - why does your GP make screening so difficult? You have a family history or doesn't it matter for this disease?




I think you have to have more than one family member affected. I have to more or less insist that I want it done.


JulieJ
(member)
31/12/2008 17:03
Re: Eve Appeal for Ovarian Cancer - please read to save your life

Thank you so much for all your replies, and I am glad I find myself in broad agreement with the sentiments expressed. I know some folk think 'fussing and worrying' unnecessarily is counterproductive, and that we are becoming a nation of 'the worried well' who fuss endlessly and imagine all sorts of fatal illnesses.

But, in the end, I'd rather be the worried well, than the supremly untroubled terminally ill (but don't know it yet).

To me, it's not just insane, it's utterly unacceptable, not to use the technology we have to ensure that we do not die prematurely of things that can be avoided by vigilant checking. After all, we don't let cars on the road without an annual MOT - yet we don't insist on human beings having an MOT.

In sheer economic terms the cost of cancer treatment, especially when advanced, is horrendous, let alone the human cost, so it makes far more sense for the NHS to invest in prevention, rather than chasing around when it's too late for far too many (though obviously it's fantastic that there ARE treatments for advanced cancer, and one day they WILL be able to cure such late stage disease.)

Julie


blossom97
(member)
04/01/2009 22:04
Re: Eve Appeal for Ovarian Cancer - please read to save your life

Just keeping this very important topic near the top.

JulieJ
(member)
04/01/2009 23:01
Re: Eve Appeal for Ovarian Cancer - please read to save your life

Thank you. I know I sound like Doom and Gloom Merchant number one, but (says an advert for Bupa that fell out of a magazine only yesterday), apparently 5,000 people a week in this country are diagnosed with cancer.....if it's going to be us, let us ensure it's as early stage as possible, and thanks to pre-emptive screening, rather than finding out when the cancer forces itself to our attention.

It's instinct for us to think 'not me' but that's what those who do get diagnosed think as well....

Right, that's enough doom and gloom, even for me. Life is for living, and celebrating, and making the very, very most of, and I hope and wish everyone to have a happy (and healthy!) New Year, and fulfil their plans and aims for the coming year.

Best, Julie.


dbverycherry
(member)
05/02/2009 15:24
Re: Eve Appeal for Ovarian Cancer - please read to save your life

Hi there JulieJ, I don't know how I missed this very important post of yours at the end of last year but I am so glad I have found it now.
I have some concerns over recent health problems I have be having in recent months and your post here has made me get to grips with it and I think I need to will book an appointment at my local GP's and possibly have such tests as the blood test and scan you so clearly explain.
Thanks so much JulieJ.

Debbie 43 in Kent


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