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

Well don't want to get too Giddy but have just received a reply from my local paper as it looks like they have agreed to do a feature on Ovarian Cancer! did try the National's but no luck yet! :-) Think I may anger some in the Health profession as when I question why there is very little awareness and nothing about the C125 test I get no response. My reason for doing this is that it won't change what has happened to me, nor will it alter any outcome I may face- but I have 2 daughters, 1 aged 20 and 1 aged 22 and I sure as hell will do everything in my power to give future generations the knowledge that i sure as heck didn't have. Il put below what I have sent to the paper as they have conditionally agreed to run a feature - any information, suggestions or amendments you have please could you share- cos this is not about me- this is about ALL of us and what is happening. many Thanks Janette.

I am writing to ask if there is any possibility you would cover a feature on how many women are unaware of the symptoms of Ovarian Cancer and needlessly die each year.

The current ‘Be clear On Cancer’ campaign is in part, hoping to raise awareness of Ovarian Cancer through posters and informing GP’s that if a woman feels ‘bloated’ for 3 weeks or more this could be an indicator of Ovarian cancer.

However myself and many other women who have/had Ovarian Cancer strongly believe that ALL women should be made aware that Ovarian Cancer CANNOT be detected through a smear test. The only sure way it can be found is through a C125 blood test or through an Ultrasound.

I myself was diagnosed with stage 1b Ovarian cancer in July 2013 and had a Total abdominal Hysterectomy on September 5th 2013. In the 6 weeks from diagnosis to operation my cancer had grown 2cm and progressed to 2b spreading also into my bowel and pelvis such is the aggressive nature of this type of cancer.

Early diagnosis is critical to the outcome. In the UK alone More than 7,000 (1 in 50) women are diagnosed with Ovarian Cancer each year, In Cancer research’s latest publication (Jan 2014) - In 2011, around 4,300 women in the UK died of Ovarian cancer, that’s 12 every day.

In order to raise awareness of this I recently made a poster and circulated it on my facebook page- this currently has 131 shares- this may not be many, but what does distress me most is that not one single woman was aware that Ovarian cancer cannot be detected through Smear testing. Most were unaware of the symptoms and of those who were aware ALL believed that even if they did have any of these symptoms they could not have Cancer as they had recently had a smear test taken!

As your newspaper is an important part of our community I am begging you to help me share this information to local women and raise the awareness & profile of this horrific disease and the impact it has not only on women but the families concerned. I have attached my poster currently displayed and hope to hear from valued selves.

(If i get banned from here - well tough, because i'm not letting this drop :-) )

43 Replies

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  • Hi Janette

    I think it's great what you're doing. I was recently diagnosed with OC and was lucky that it was stage 1A but I also recently lost a close friend to the disease as well. So I too, am in the process of trying to raise awareness of the symptoms and the profile of OC. My first little achievement has been to get a local magazine to do a feature on OC in their March issue which will be distributed to about 5000 homes. Keep up the good work is all I can say!

    Sue

  • Fantastic Sue, 5000 readers is brilliant- so sorry about your friend :-( she would be proud of you :-) 'Iv got the bit between my teeth on this one' (did have a horse til got really ill and if I can manage a tonne of a huge gelding' - fighting the battle to get this more prominent should be a doddle!! lol) xxxx

  • Dear Janette

    Surely far from being banned you will be feted for what you are doing to raise awareness of ovarian cancer and the fact that it is not detected by a cervical smear. Well done you for getting press coverage. You obviously have a good story and a good campaign and have hit the papers at the right time.

    I'd love to share your Facebook page. Perhaps you will send me a link via Facebook. It would be good if all of us who fired up to campaign for better resources join forces. I so much admire what you're doing. Please do post a link to the article when it comes out.

    Meanwhile stay strong. You're right to be concerned about the generations that follow us.

    with love xxx Annie

  • Dear Annie, I So agree that if we could do this together rather than as individual's we would have a stronger voice, before i joined here a couple of days ago i didn't know anyone personally who had had ovarian cancer, and from the diagnosis to recently all i could think about was 'if im going to die please let my family have one last fantastic Christmas' such was the nature of all i had read about Ovarian cancer. I know that's a selfish attitude but that's what got me through. Now, Iv had my wish. It just annoys the heck out of me that I know every single sign to look out for breast cancer - lumps, inverted nipples, discharge etc. but i didn't know a single sign for ovarian cancer, and this 'bloating' is but one of many symptoms and really, most women our age feel bloated!! please add me as a friend on facebook Annie I'm janette oljanuk and my poster's on there, its not brilliant but will do for time being - have you any ideas on how we can be a 'one woman team' ?? xxxx

  • Thank you so much for doing this janette47, I lost my mum in november to OC and I am so very angry that ovarian cancer does not get any coverage. When it is a little less raw I would love to make a noise about it.

  • Oh Mickey, how you feel i cannot comprehend as i still have my mum thank god, but please please i know you are hurting but please would you help me, Ovarian cancer month starts on feb 10th - please share the message of what the signs are, if you could share the basic fact that Ovarian cancer is not detected on a smear test - and what the signs are it would be so so so helpful. I have a poster if your on facebook and you could just share it - my name is janette oljanuk, if not no worries and if you want to chat or pm message me i am always here xxx

  • Thanks Janette47, I shared it when I saw your reply up the page. Thank you for the offer of a chat I miss my best friend so much. xxx

  • Dear Janette..... Great! I'll add my applause to your drive to raise awareness.

    Did you know that Ovacome (www.ovacome.org.uk) do free BEAT credit card sized awareness cards and posters for any member. They give the main signs and symptoms. They're good for dropping off in salons, libraries etc. they also do a poster to take to GP surgeries, which I have tried to distribute but not had much success with......I know....disgraceful :-(

    There is also a Facebook page called Ovarian Cancer UK where you can join and put your poster. I'm sure all the members on there would share on their own pages.

    Well done for all your achievements.

    Love Wendy xx

  • Hi Wendy, yeah have shared the BEAT poster at the start of my journey- which seemed great at the time - just there is nothing that says a smear test does NOT detect ovarian cancer which after speaking to loads of people they were unaware of- me included!!! lol. I did try to share my poster with the 'cancer research' page but it soon got removed!! lol guess we aint a happy statistic bunch lol. il try Ovarian cancer UK page tho, thank you so much Wendy and thank you for replying xxxx

  • Yeah, know what you mean about women thinking it can be detected via smear tests. I did a radio info bit a few years ago and two women rang in afterwards to say their smear tests had been clear. Pity info on OC can't be included with smear test letters (not my idea, I think it was Annie or Gwyn who first suggested this...great idea though. Apologies if I got that wrong, anyone :-O )

    W xx

  • Taking leaflets and posters to the smear clinic is a good place to draw attention to the fact that smears do not pick up on ovarian cancer.

    Well done and best wishes love x G x

  • I thought at first this is a great idea Gwyn but realise in reviewing a lot of the literature from the various charities that flyers don't mention smear tests don't detect ovarian cancer so it might give the opposite impression.

    Perhaps a new flyer especially designed for Smear and Wellwoman Clinics might do the trick? It would certainly target the right audience and be more focussed that putting leaflets in GP surgeries.

    You've certainly started a completely new train on thought on this and I'm sure one worth raising with the various bodies that produce literature on ovarian cancer. xx

  • You have a point Annie (about there is no mention of it) I did suggest this years ago at a together day that we should target smear clinics, but I don't think it has been picked up on by the charities, although when I went for a mammogram they were only too willing to have a supply of leaflets in their clinic.

    Love x G x

  • Well let's raise it with the charities again. They're always open to new ideas. I guess logistics would be the greatest problem - how you actually get the flyers to the appropriate clinics. There's a Get Together Day in Cardiff so I could mention it there and remind them you raised it as an idea a couple of years ago.

    I wonder what Janette makes of us highjacking her blog? !! tee hee. We're full of ideas. It's something for Members' Days and Get-Together Days to ask the service users what they would do to raise awareness. xxxx

  • I intended to take them in our general hospital (not cancer hospital) when I went for a blood test...but then forgot to put them in my bag trouble is I am always in a rush to get away quick from the hospital because the car park costs a fortune, Tony paid six pounds a day to park there while visiting me... I wouldn't mind but visiting time was only one hour in the afternoon and only one hour in the evening. xx

    But your suggestion to write it on the leaflets is a good idea (I merely suggested targeting the clinics) xx

  • I am so Glad you two are doing this- The worst part throughout all this has been the 'isolation' of the journey- now i feel like i am part of a 'group' and if we all work together even in our own areas it would be fantastic :-) And that parking charge is ridiculous Gwyn- think at St James's in Leeds you could get a free pass- xx

  • See my PM Janette. xxx

  • I think it's more to do with the fact each C125 test costs roughly £30!! xxx

  • Just to point out that a ca125 isn't very accurate... so is not used as a tool for screening (this is why you don't actually see it on posters etc) and this might be the reason for CRUK deleting your poster, it could be misleading it is only a good indicator for some people xx

  • I feel some concern about CA 125 as well. For some people it seems to be a good indicator, but for others, like myself, it is not raised. Mine is in single figures, yet I have several tumours. I agree though there is need for more publicity & awareness.

    Di

  • Yes... it's not only inaccurate sometimes, but a person with a normal range CA125 can have advanced disease as I have. Love Tina x x

  • Hi Tina, Di16 and Gwyn, I totally agree that a C125 test is not always accurate and not always pick up O/C - I just feel that for many women who go to the doctors and say the feel 'bloated' they are often treated for other conditions first and if they do not know all the symptoms, it can lead to a prolonged diagnosis which I feel is where the heart of the problem lie's- all i'm trying to do is give women the maximum amount of information so if they are aware of all the sign's they may no as easily be led to believe it is something else. I honestly thought i was the only fool who thought a smear tested for everything- but after speaking to a huge number of women 99% of them thought O/C was included in this. I honestly don't want to give out wrong information just want more women to be be in control xxx

  • Hi Janette .. I know .. It's really important they are. X x

  • That is a brilliant idea

  • Shared on FB Janette. Keep up the good work! xxx

  • Thank you so much xx

  • Great piece Jan. I agree that there should be more awareness of cancer. But do feel the media concentrate on breast cancer, which is really more detectable than OC. So good on you. I am on your FB page so let me know what paper and when. OK

    I feel I am one of the very lucky ladies to be still free after 3 years. But know from this site that so many have not had that luxury. So go for it. Xx proud to know you. If you want any help just ask as think I live not far from you.

  • If you live near Marianna do you want me to let you know when they will speak to me (Telegraph and Argus) and we could speak to the reporter together - anyone else who lives Yorkshire way would be more than welcome too? I'm going to contact the secretary of state for health too (Jeremy Hunt) and see if he can shed any light on this, the fact when loads of my friends found out i had Ovarian cancer at first they all said 'ooo, i'd better get my smear test done' just show's how this needs highlighting :-) xxx

  • Hi there . I live in rotherham. if you want some help just say the word. Will send you a private FB so you know a bit about my OC . ok As it is a bit different to most.

  • I, like you, have 2 daughters, 28 and 24 years, and am worried about them. I take part in trials etc to help them an others. Being diagnosed 3C in July 2012 - I never knew signs/symptoms of OC. The onc reckoned I had it 2 years +. Maybe if i had known about OC I could have done something beforehand. Big debulking op has left me with permanent colostomy (which I hate) but as my dear friend Whippet says "bag or box" lol. I'll take the bag thank you very much.

    Any publicity about OC is good. You should be proud of what you have achieved so far.

    I too would like a link to your FB page so I can share your poster with my FB friends and they can share with theirs, ad and so it goes on. We can reach many people through the social networking sites.

    So many good ideas coming from your post - thank you for raising issue - let's not let it rest. Love Izzy xxx

  • Lol that's a great quote from Whippet x Iv put a link on another post about the poster Izzystep and hopefully it may help even just one woman :-) I'm awaiting test with a geneticist in leeds as my mum and grandma had breast cancer. Just praying to god don't have the BRCA1/2 gene and if i do iv not passed it on to my daughters - this is making me cry even thinking about it! - If they had well i dread to think of the state i would be in. I can honestly say - right from the start (apart from the initial 'I'm going to die') iv been mentally strong and convinced i'd fight this fecker with everything i possessed and i wouldn't let it take me from my family without a darn good fight. It's different when it's your kids tho ain't it? :-) my son had a brain tumour when he was 21 (good now :_) ) and that was truly like being in a living nightmare as there's nothing as a mum you can do xxxxxx

  • Continue to be strong and positive - that's the best remedy for this bugger. I had the 'I am going to die' so went about putting my affairs in order, something that I had put off for years. When I finally finished sorting out finances, wills, gifts etc etc I felt much better knowing that went I eventually go everything has been sorted.

    I worry about my girls and its only natural that we do. I agree it's so different when your kids are ill. I have a daughter with psoriasis and arthritis and I go to every appointment with her, even when I was really poorly with first line chemo. I want to know what's going on, what they are going to do, when they are going to do it, how long will it take and what's the side effects. She was on a two weekly injection that cost £800 a time, but had to wait months for the funding. She was on it for 8 months and it did no good whatsoever. She is now on the light therapy, which seems to be drying up her psoriasis but isn't treating the arthritis. Sorry I have ranted slightly there.

    I don't have any close relatives that have had cancer before, maybe I am the first in line, but I am going to ask my oncologist what is her advice. I don't suppose that will test me for the BRCA gene, but it's worth a try.

    Pleased that your son is all good now - what a worry that must have been for you all, and so young. It's surprising how much stress and worry we can take.

    Take care of yourself, be strong and keep your campaign of awareness of OC going.

    Love n hugs Izzy xxxxxx

  • Hi Janette,

    I totally agree with what you are trying to do

    I will PM you with my experience as my symptoms were not typical,

    Andrea x x

  • Welcome to the fight Janette! I shared the poster ;-) and agree we all should do this kind of thing. I give out leaflets and BEAT cards (available from Ovacome) when I do craft shows and fairs, as they are always chock full of women.

    My mantra is

    - If you take nothing else away from this stall, take this symptom card

    - Because doctors are not sufficiently aware of symptoms, we MUST be

    - It can hit you at any age, young or old (even sometimes after a hysterectomy)

    - It is unacceptable in today's Britain that women are still dying of ignorance -- but they are

    I have at least one at every show who gets a sudden look of surprise/panic and identifies with some of the symptoms, who then promises to go to the doctor -- usually after saying they had a smear so surely they are fine, and me explaining no -- and surprisingly often one who says 'my mother/ sister/ aunt had OC' but are unaware there are genetic predispositions.

    I will be in Woman and Home March issue, which comes out at the end of the month for OC Awareness month in March - and have volunteered as a case study spokesperson.

    Onwards and upwards

    Love

    Sue xxx

  • Wow Sue what a fantastic reply thank you, you really are doing great things, what iv learnt most from being on her is that there are so many women out there pushing for this information to be made widely available and yet as you say so many are stil dying of ignorance (that part really touched me and made me cry) what makes me pull at my hair now is that every week for years iv checked my bust area for lumps/ looked in the mirror/ scrutinized for inverted nipples and yet when i had a stomach larger than when i was pregnant, couldn't breathe/ walk far without nearly passing out and had been bleeding solidly for over a month, (even had 'accidents' in bed -god never thought id disclose that!!! lol) let alone needing a wee every 20 minutes I STILL WASN'T AWARE IT COULD BE OVARIAN CANCER aaaggh!!! Will def buy magazine and really well done- maybe we need to have one 'big' day with us all together to get our voice out ??? xxxx

  • Hi Janette, could you give us a link to your FB poster, I'd also be happy to share xxx

  • Hi LindyLaine he's the link and thank you so much for sharing s30.postimg.org/75g1cq4ch/C... or it's on my facebook I'm janette oljanuk xxx

  • Thank you! :) I've just sent you a FB friend request xxx

  • Hi janette I applaud you in raising awareness for this cruel disease I have also put up posters and spread the word admittedly my posters were from the nhs but I still put them up in my local swimming baths,library , grandsons school and in my bingo hall . Keep up your excellent work hunbig hugs lena xxxx:))

  • I am 43 I was 40 when I first went to my GP with what I thought was a digestive problem. NICE guidelines say a CA125 test should be offered to women in their 50s showing the symptoms of OC. That annoys me as if my GP had stuck to that guideline it might have taken even longer to get diagnosed.

    I was Stage IV when I was finally diagnosed. I had probably had the cancer for quite a while before I started getting symptoms.

    It always surprises me that people think a cervical smear can detect ovarian cancer I remember my boss asking me if it was picked up in a smear and I had to tell her no that is for cervical cancer.

  • Thank you for sharing that with me ScardyCat, thank god i went to local A&E when things got really bad as i saw a Spanish female doctor and it was her who said i said i needed the test- God only knows where i'd be now if she hadn't urged me to do so immediately as I'm only 47 xxx

  • Sorry I've come to this thread late.

    I was very surprised to hear the gist of comments above that there is not enough info about re ovarian cancer. Lots of GP surgeries in my area (Sheffield) have posters up, and here's the link:

    nhs.uk/ovarian-cancer/Pages...

    but reading this DoH site, it would seem that these cancer awareness campaigns are being tested out in various parts of the country, so perhaps these posters haven't been made available nationwide.

  • Hi Opalclouds, I was really shocked too when i found out after my op how many women thought there was too little information out there, I honestly berated myself no end when i got my diagnosis - I thought i must have been walking round with my eyes shut for 47 yrs to not have realised in the 6 months prior to my op. (My surgeon thinks this was about length of time i'd had it - although i look at pictures of myself from a year previously and had constant bloating then) I think it's really important that posters are up in surgeries, all i can say on this tho, is that I feel they should be everywhere - not just in doctors- My best friend is currently plucking up the courage to visit a doctor as she has some of the signs and has had endometriosis for years - but ain't seen a doctor for years- it's only cos i'm badgering her now that she is contemplating going, not only that, but often women who go to the doctors do so if they have an ill child and are more concerned with watching for their child's name flash up than looking at posters- or even perhaps there's some like me- I was just a 'normal' busy mum, working, rushing round after my family - often shattered and when i went to the doctors where it was quiet i'd just 'flop' in the waiting room 'people watch' or chat to the person next to me - I have this amazing capability for attracting those who wish to tell/show me their 'boil's, finger's hanging off, etc etc' or tell me how they think the doctor is 'war na fuzz' (as we say in Yorkshire :-)) so never got a chance to look at the posters- maybe if the posters/information were up in toilets ie pubs, workplaces, hairdressers where women frequent on a more regular basis then more woman would be diagnosed sooner :-) just my thought's tho xxxx

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