Charity: Why is it that they push charities... - My Ovacome

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doreenharwood profile image
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Why is it that they push charities involving Brest cancer, but Ovarian cancer is never mentioned. Also they tell women how to check their breasts but until I got ovarian cancer I had no idea what the symptoms were. How many women out there are walking around with this terrible disease and not know it, I e mailed This Morning last week asking then to maybe do an article on Ovarian Cancer to promote the symptoms. I even said I would speak about it on air. Please if anyone has a spare 5 minutes e mail This Morning highlighting this disease. If we can save other women getting to stage 3 and 4 it would be good.

Love and Hugs to all Babs x x x x

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doreenharwood
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iamstillme profile image
iamstillme

Hi Babs . I totally agree . This is why it is known as the silent killer . Unfortunately as well a lot of the symptoms are so vague i think a lot a women feel silly seeing there Gp / As well a lot of the symptoms can be due to other things . I never had the usual things . Only 2 week history abdo pain . Apart from some weight gain around the middle(no bloating) which a put down to age/over eating and the menpause . Fab for being so proactive a great way forward . I personally think after a certian age as with breast cancer routine ca125 should be done May not prevent but will help with very early detection

Love

Ally

doreenharwood profile image
doreenharwood in reply to iamstillme

That's what I was thinking why can that not be done when a woman goes for a smear test or a mammogram. It is more common in women over 50 but I have read about women as young as 32 getting it. Lets hope This Morning can pick up on this matter soon. Love Babs x x x

wendydee profile image
wendydee

Great initiative, Babs. That's why I trained as a ROCC when I retired, but it's amazing how many local newspapers and radio stations do not want to know. Will email This Morning, as you suggest. The scary thing is, even some GPs are not too aware of the signs and symptoms. We have to keep pushing to raise awareness!

Love Wemdy xx

doreenharwood profile image
doreenharwood

I know what you mean about GPs When I went to mine he said I had a twisted Bowel. It was not until I had been in hospital for two weeks I finally got the diagnosis. I am telling all my friends the symptoms as when I spoke to them none of them had any idea about ovarian cancer and how to stop the signs. Lets hope we can maybe get some information to other women out there. Love Babs x x x

Hi Babs

Yesterday I had an email off "Target Ovarian Cancer" they've been campaigning for quite some time on raising awareness of OC amongst other things..and have finally won...they have now had confirmation that we are going to be added to the symptom awareness initiative that the dept of health are doing for other cancers... the ones that keep turnig up on TV..if you go on the "Target Ovarian Cancer" website you can read about it on there... It is a major breakthrough for them..love x G x :-)

doreenharwood profile image
doreenharwood in reply to

Hi Gwyn, I have read the article from the Government lets hope they carry on pushing it through. Since getting OC I feel so strongly about letting other women know about things. But I'm not an educated women and don't know how to go about things. Ideas just pop into my head and I feel I have to try and share them with everyone. Off to work now Sunday Lunch so it will be a busy one. Back on overcome tonight Love Babs x x x

in reply to doreenharwood

Hi Babs

All the best for today, hope you get loads of compliments.. I agree with you I feel exactly the same in raising awareness... If it saves one life it's worth it... and can't understand those who don't want to get involved. love x G x :-)

wendydee profile image
wendydee in reply to

This is the article, I think. I hope the Ovacome committee won't mind me sharing this news with you all.

Love Wendy xx

Dear Supporters,

 

 

I’m delighted to let you know that we’ve had confirmation from the Department of Health that ovarian cancer will be included in its symptoms awareness programme, Be Clear on Cancer.

 

This is a hugely important development and one that we believe will genuinely save lives. Currently only 3% of UK women are very confident of spotting a symptom of ovarian cancer. By raising awareness of symptoms, the Department of Health aim to improve early diagnosis, and save the lives of at least 500 women a year.

 

As you know, this is something that Target Ovarian Cancer has been campaigning for since the beginning, and so many of you have been so involved in this successful outcome. From those of you who have met your MPs and campaigned locally, to those who have attended our parliamentary events and the All Party Parliamentary Group (APPG) on ovarian cancer meetings, to those who have taken part in press, TV and radio interviews – we are overjoyed to have your efforts acknowledged with this news.

 

We’re also extremely grateful to the APPG on ovarian cancer, which has been instrumental in securing this progress, with members taking up the challenge to grow support within parliament. They held a debate last autumn, and subsequently met with the Care Services Minister Paul Burstow MP. Indeed he chose the AGM of the group to announce that ovarian cancer was now being included in the Be Clear on Cancer programme. Three initial pilot campaigns will take place in cancer networks, early in 2013, and it is then hoped that the campaign can be escalated to a regional and then national level.

 

You can read more about this story here. Please do join in our delight and share this news across your networks, as it is a huge milestone for women with ovarian cancer.

targetovariancancer.org.uk

ScardyCat40 profile image
ScardyCat40

The problem with the CA125 as well is that its often not elevated in the early stages. I got the same email as well Gwyn

I am very sceptical about lists of 'symptoms', and have huge sympathy with GPs who find it just about impossible to recognise ov.ca.

I had stage 3c, grade 3 disease with no symptoms apart from an enlarged groinal lymph node. It was not sufficiently enlarged enough to ring any alarm bells for my GP, and I had to go back twice to get a referral 'only because you are worried- it won't be anything'. When I eventually saw the general surgeon he (luckily, as it happens) thought 'we'll get rid of that for you,' and after 4 months it was removed. Another month later, the histology showed cancer. The only thing that would have diagnosed it earlier was a ca125 test, but I had no gynaecological symptoms at all despite two large tumours, one on each ovary. As for the GP; well, there was no gynae problem, my periods were as regular as clockwork, and any variation, pain etc was to be expected in a woman in her early 50s. A GP might see only one or two cases of ov. ca. over a whole career! In so many of us, this is truly a 'silent' disease. I would have (had I ever even heard of it) checked a list of 'symptoms' and been reassured that I was fine. My intuition was the only reliable pointer.

Isadora.

wendydee profile image
wendydee in reply to

Yes, I know what you mean, Isadora. Apparently it's about 5 cases in a typical career. I was going back and forth for about 3 years with some fairly typical symptoms but it was a while before I was diagnosed. I have been round a lot of local GP surgeries asking for the poster to be displayed but I only have feedback that it was put up in waiting rooms in about 10% of them. We have to keep on keeping on. If all of us on here wrote to our MPs applauding the latest efforts by Target Ovarian and asking for OC to be put to the top of publicity agendas it may do some good. I keep on emailing mine, I am sure he gets fed up when he sees 'Wendy Davies' again ;-) you are right that our intuition is a powerful pointer though. I KNEW something was wrong ......

Love Wendy xx

SandyL profile image
SandyL

Isadora,

I agree with you 100%. The symptoms are so vague and so very, very gradual, it's difficult to notice a change and even those microscopic changes I attributed to menopause - as I was sure it was going to happen imminently because I was at that age and my Mum had gone through the 'change' at 53 so I fully expected to as well.

I have been 'constipated' since I was two years old - so when things finally stopped working I went to Emergency. Actually, I thought I had colon cancer - like my Mum who died at 70 because of it (a recurrence). Ovarian cancer never entered my head, or the head of the Dr I went to see - who prescribed different laxatives and suppositories. To this day I say that even knowing what I know now, I'd still not be too suspicious about my symptoms. It is truly a nasty insidious disease.

Just want to add, by the time I'd realized something was going on, I went for a pap smear to rule out (in my own mind) cervical cancer. Two weeks later the diagnosis was Stage 4 Ovarian Cancer and a letter came in the mail advising me that my pap smear was good (I smiled at the irony).

BTW - my periods (at 53) were also regular, although very heavy - but that wasn't unusual either, they had always been that way.

Sandy.

daisycandoit profile image
daisycandoit

Hi Babs, this is a brilliant idea, I will email them, my gp took ages to catch on to what was going on with me. Even though I told him my mother died of OC. He obviously didn't know the significance of that, I was looking very pregnant, couldn't eat had IBS and no energy. Eventually I broke down in tears in the surgery saying I couldn't take any more, then he admitted me to hospital after a ct scan they confirmed what I already knew!

Diane xxx

doreenharwood profile image
doreenharwood

Hi Diane,

This is what I'm saying I had know idea about this condition and as I said my doctor said I had a twisted bowel. Lets get information out there to other women , who could could be suffering like we did x x Love Babs

GeorgeSuffolk profile image
GeorgeSuffolk

I also agree that increased awareness would be good, but the problem is that the symptoms are so varied and only usually appear when the disease is already advanced. I'm a nurse and I thought I had something like IBS or diverticulitis, ovarian cancer never occurred to me.

My hospital is doing research into trying to find a more reliable test than the CA125 and trials have been done in Denmark on doing regular CA125 on woman, but unfortunately it is not reliable and there were apparently 2 deaths of healthy woman who had raised CA125 but not cancer, they died from the biopsies and further tests that they underwent. So it is rather a dilemma for the medical profession at the moment.

The reason breast cancer gets much more publicity is that it affects about 46,000 women a year in this country and OC only about 6000.

But knowledge is good and the more awareness out there the better, so well done Babs for trying the achieve this.

Love George x

cerise profile image
cerise

Hi everyone,

Below is an extract from an email I have received from another OC charlity, which certainly seems to be progress. Once I am better, I intend to raise awareness in some way myself too.

Best wishes and best of health to you all! Sue x

I’m delighted to let you know that we’ve had confirmation from the Department of Health that ovarian cancer will be included in its symptoms awareness programme, Be Clear on Cancer.

This is a hugely important development and one that we believe will genuinely save lives. Currently only 3% of UK women are very confident of spotting a symptom of ovarian cancer. By raising awareness of symptoms, the Department of Health aim to improve early diagnosis, and save the lives of at least 500 women a year.

lucy1dog profile image
lucy1dog

Hi everyone I too was a nurse and had no idea I was so poorly( ovarian and womb cancer both were primaries in the same area). Looking back all the signs were there I just didn't put them together. My local paper wrote my story last year to highlight Ovarian cancer and although I live in a large city people did come and speak to me. I think everyone should be more aware si I will email This morning.

Lucy x

doreenharwood profile image
doreenharwood

Thank you ladies seems I have started everyone thinking, we must get awareness out there to all the other women who could fall pray to OC lets keep pushing. I will keep checking overcome as I am sure everyone will be coming up with ideas now Thanks everyone Babs x x x

julie93 profile image
julie93

Hi Babs,

Thats a great idea, I will email this morning. Increasing awareness is very important and needs to continue.Too many women are still unaware of the symptoms of OC.More research needs to be done until better ways of screening for and diagnosing OC are found.

I was also happy to get an email from Target recently, saying that OC will now become part of the 'be clear on cancer 'campaign.The more publicity the better.

Of course there are some people who don't have symptoms.There are many others who have very mild symptoms (eg slight weight gain round the middle and a little indigestion) and don't go to the Dr.Still others are going to Drs and being misdiagnosed.This is not good enough, even if GPs only see 1 case every 5 years it is still their job to diagnose.

So the more the profile of ovarian cancer is raised, with the public and also with GPs, the better it will be.

Look forward to seeing you on Good Morning.

Juliex

nandi profile image
nandi

I was visiting the GP with regard to IBS type symptoms, when my regular smear test was done, it came back clear and within 2 weeks I was diagnosed with OC, later changed to PPC after surgery. Many women I have spoken to still think that a PAP test will check for OC. Infact many seem to think both cancers are connected. The very least that can be done would be informing women that a cervical smear test will NOT detect OC.

MargaretJ profile image
MargaretJ

Hear hear Babs! 2years ago I had a Pimms afternoon for Macmillan and raised £ 400! Today I had a yard sale in aid of OC charities and raised £201, and that includes £60 I was paid for taking part in a research project and £20 donated by people attending a meal out who donted their discount. My local hospice got the unsold items and I plan to sell some surplus kitchen equipment via the under £10 section of the local paper so I might manage another £20/30 but no-one seems interested in OC and they all believe it won't happen to them. No one wants to hear it talked about even!

Ah well we need to keep trying!

Margaret!

doreenharwood profile image
doreenharwood

Well done Margaret,

Great you have raised money I want to do something next year imaybe a fun run or something like that. I wont manage it this year as the chemo is making me tired can just about manage to work part time now. But hopefully next year when I'm fighting fit I will have a go and raising money x x Your an inspiration love Babs x x x

RuthPOvacome profile image
RuthPOvacome

All the ovarian cancer charities are doing a lot of work to raise the profile of ovarian cancer. I believe there was an interview on This morning during March which is the month for raising awareness of the disease. Ovacome has a variety of information around its BEAT campaign which highlights some of the most common symptoms experienced with ovarian cancer and we are always happy to make these available to anyone who can use this information. The credit cards are particularly popular as they are easy to hand out

If you need any further information or want to discuss things further do give Ovacome a ring.

Unfortunately as 45,000 women are diagnosed with breast cancer every year against 6,500 with ovarian cancer it can be difficult to get our voice heard but we are continuing to plug away at it.

All the best

Ruth

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