Re Poster: s30.postimg.org/75g1cq4ch/C...

For those here before, those now and those in the future

Hi all, many thanks to those who have shared my poster via facebook, it's not brilliant but it does some of the job I hope. As some have rightly said, a C125 does not also give a correct diagnosis on it's own alas :-(. What i have also learnt is that so many women out there are doing a fantastic job to raise it's awareness - there just seems far too little out there for tho, if my poster catches the eye of those in power who seem to be doing little and they are annoyed by it - well so well and good- because then hopefully they'l be an outcry and il be slated - but at least then there will be an outcry and someone will hopefully get the profile of Ovarian cancer to the level it deserves!! - if not, well iv tried. If however all this does, is when one woman reads it and thinks 'ooh iv got all those symptoms' Iv had clear smear test but maybe it is something to worry about after all and not just my age' i'd better get it checked out' then il have achieved my purpose :-) xxxxx

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  • I agree with you completely!!!!!

  • Thank you and hope you are ok xxxx

  • Your post is very good and you don't actually say that it is used for diagnosis but for detection because it's only the starting point. Until they come up with some other way of screening for ovarian cancer it's all we have.

  • Your poster has flown round Facebook so well done you!

    There's an All Party Political Group for Ovarian Cancer that some of us attend regularly. This month it's joining forces with the APPG for Breast Cancer at the meeting on 28 January. Meeting is from 3 to 5 p.m.. Target Ovarian Cancer are the secretariat for this and if you want to get on the mailing list to hear about these and other meetings, potentially in your area, you can go to their website and click on 'Sign Up for News'. Equally sign up with Ovacome on their site, and Ovarian Cancer Action and this should give you an overview of the breadth of activity going on.

    If you want to attend an APPG as an observer which gives you the opportunity to ask questions you can get in touch with Mike Feakes - MFeakes@targetovarian.org.uk. He'd let you know if there are any places left.

    A lot of work has been going on to find an effective screening test, and a massive UK-wide research project took place a couple of years back to compare CA125 and Ultrasound as screening measures but unfortunately it didn't lead to any firm conclusions.

    Whilst we have no effective screening it's good to lobby for more research but what the Governments can and should be doing in collaboration with the 3 major ovarian cancer charities and their volunteers is to step up the awareness-raising. I'm frustrated that the Welsh Government is the only one in the UK that has absolutely awareness-raising campaign going on so I continue to lobby for that. You're doing this brilliantly with your press release and Facebook poster. I'll also ask whether there are special leaflets for distribution to women's clinics when I attend the APPG as it does seem a good idea. Perhaps it's already in place? xxx

    Annie

  • Hi Annie, Yeah have just read about the UKCTOCS survey- eagerly await the findings some time this year, it says that preliminarily the C!25 test looks more reliable compared to scan? I agree though that more needs to be done to raise awareness in the first place- i'm also worried when they publish the findings it will say that the women partaking were 'post-menopausal' which could be construed that O/C only occurs in this age group and mislead some women into thinking if they are younger they are not at riak ?? i don't know Annie, I just think as you rightly put more awareness needs to be out there in the first place and women need to be aware of all the signs and facts initially - If I had a pea sized lump in my breast i'd be straight to doctors - yet i had a huge stomach with 2 grapefruits in and still wasn't aware of what it could be :-( Thanks for the link to the target ovarian cancer All Party Political Group, il sign up now. Paper interviewing me at 11 this morning. luckily its a woman - as once before they asked for a quote when the pope died (I work in a Catholic primary school and i said 'as he was the head of the Catholic family naturally it was upsetting' - what they actually put was 'all the children thought of him as a grandad' :-( lol - therefore i'm going to ask to read the article before they publish it!!! lol xxx

  • Good idea to read the article. The South Wales Echo headed a whole page article, 'Annie's pain laid bare for all to see' and a whopping photo of me leaning over my garden gate. I only mentioned that the initial swift diagnosis followed feeling a slight pain whilst swimming!!!!!

    I guess they thought it would draw in the readers so I concluded it was worth swallowing my pride if more people became aware of Ovarian Cancer.

    Good luck with your paper interview. I forgot to say Sharon Harriott - SHarriott@targetovarian.org.uk - is the person at Target who's responsible for media coverage across the UK and I'm sure she'd be pleased to hear what you're doing.

    xx Annie

  • Hi Annie and Janette... mine went from 'Be Clear on Ovarian'.. to 'Susan Wants Action' ! Love Tina x x

  • Well hopefully the title and reputation of the Newspaper defined what sort of 'Action' you wanted! It could so easily have been misconstrued. lol xxxx

  • Hah! You're right Annie! I'd better be careful with accompanying photos. x x

  • Come to think of it my last article was a full page spread .... on Page 3! ha ha!!!!

  • Iv laughed my sock's off at you replies - thank you both so much. Did telephone interview today and they are coming to take my photo Wednesday- I'm hopelessly un photogenic too so my headline will probably be 'Ovarian Barbarian' hahaha x

  • lol - looking at your pic you seem to me to be very photogenic to me. Only tip I can pass on was the photographer on the last shoot went into raptures about my jumper 'cos it was brightly coloured. You can see the interview at: walesonline.co.uk/news/wale...

    Ovarian Barbarian indeed! lol xxx

  • This is a link to a Guardian article on 6 January, according to which, the results of the UK TOC trial is due later this year.

    theguardian.com/lifeandstyl...

    I can't vouch for the stats.

    Love Mary xx

  • Hi Mary- just read about this, thank you for the link, will be interesting to see findings this year- just bit worried that it says all women screened were post menopausal- and when they release results hope it's not construed that women pre menopausal cannot get it :-( xxxx

  • Its something that I'm curious about too Janette, because despite being 55 at the time of diagnosis I still hadn't completed the menopause so wouldn't be eligible either. Late menopause isn't unusual. My sister-in-law didn't finish hers until she was 60 and one of my sisters still hasn't finished hers at the age of 56. Annoyingly, a late menopause is considered to increase the risk of OC. (And my sister-in-law had breast cancer at the same time as my OC) xx

  • Thank you for posting this . Its quite interesting and I'm fascinated by the menopausal bit. I had my menopause at 25 yrs and blame HRT as I was on it for 20 yrs !

  • my mums friend's daughter had ovarian cancer recently and she's only in her 30's! - I asked for HRT for ages but was told couldn't have it as there is history of breast cancer in my mum's side and they said as i had back problems once upon a time i couldn't have other type of HRT, funny tho - cos since op they are throwing it at me :-) lol xxxxx

  • Interesting ! Xxx

  • HRT is another risk factor. When I started having menopausal symptoms I agreed with my doctor that it was best not to go on it unless life became totally unbearable for this very reason. I ended up with OC anyway. Of course when you have an early menopause, you don't really have a choice xx

  • Was hoping to tie this poster and my interview with our local paper into the 'Be clear on cancer' adverts that go out in February- alas, exposure on Ovarian Cancer will only target a regional area (North West) not National which seems such a shame :-( x

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