Raising Awareness

I've thought for a while that one easy way of raising awareness of ovarian cancer would be to note the signs on the reverse of the letter that calls all women over the age of 25 to screening for cervical cancer.

Everyone I have talked to about this thinks it's an excellent idea. Certainly, if I had know that I had the signs of OC, my disease would have been diagnosed long before it was.

Alas due to general lethargy I have done nothing constructive beyond punting the idea to several prominent oncologists.

Each doctors' surgery could easily do this. I think the way to progress the idea is to write to MPs asking why it isn't done - it might be an idea to add the signs of all gynae cancers at the same time.

The only possible argument against is that many more women would ask for CA125 tests. Some grumpy GPs would not like to have to deal with this, but the cost of the test is so much less than the cost of treating late stage disease, especially when you add in recurrences.

So can we do this? I shall and I will report back.

14 Replies

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  • Dear Chrystyn

    I think it would be a great idea to provide additional information on the large areas of white space on NHS appointment letters and it wouldn't make any work.

    I think I'd also ask why Cervical Smears can't be broadened to other aspects of gynaelogical health. That would just be a matter of additional training and not as expensive for the nurses to do a bit of palpating or questioning. I mentioned this before and someone explained that if you have the smear done at a Well Woman Clinic they do take a broader view.

    If that's the case why isn't this good practice extended to all areas. I've never been told about a Well Woman clinic.

    I think you should go ahead. I'm looking forward to what is said. I'm meant to be getting in touch with my MP about Ovarian Cancer too with the help of Ovarian Cancer Action Research.

    Did you see Una's wonderful paper given to the Assembly in Northern Ireland. She posted it up with a URL this morning. It was a fantastic speech and had a stunning response - unanimous vote to take her proposals forward.

    Best of luck with your venture. Let us know how it goes.

    xxx love Annie

  • Hi Annie, to make it work, we ALL have to write, or as many of us as possible. The other way would be to start a petition at the No 10 website. So please will you ask too?

  • I'd write a letter of support. Do we need to draft one and post it up on this site to get as many people as possible involved?xxx

  • Hi chrystynh

    I think that is a great idea. Anything that raises awareness by being put under the noses of women has to be a positive move. You're right too, the more MP's that are contacted about it, the better the chance of something being done. When you write your letter, why not share it as a pdf document and post it here. That way the same letter can be downloaded and each of us can forward it to our own MP. Infact the letter could also be forwarded to our own local surgeries and health authorities too.

    Andy

  • This is a great idea,

    also, watching Una speak to the Northern Ireland Assembly has been inspiring and made me feel I really should do something to raise awareness, I was thinking about writing to my MP, if others on the site do the same we have a better chance of being heard

    love

    Jan x

  • Hi Chrystynh, Yes i would be up for this,think its an excellent idea,and the more people who join in the better .

    Love Sue x

  • Great idea.

  • That is a great idea, my mum wrote to her surgery after her doctor asked her to write down the sequence of events that came to her being diagnosed with ovarian cancer. They have now said that they have put up posters and signs to raise awareness of the signs and symptoms, as well as briefing all the doctors about it so as not to miss it again. But quite rightly this is something that should be happening everywhere. Ovarian Cancer and the CA125 test should be a test that people have heard of, just like the smear test, look forward to helping this cause.

  • Yes - this seems a great idea - presumably we need to lobby at both local and national N.H.S. level so that what is a routine communication has this aspect added on.

    Look forward to hearing more - Bunty

  • Yes, all for it. Great idea.

    Eileen xx

  • HI, here in Wales our Cervical appointments come from a central appointment centre. I have raised the question with the practice manager at my surgery today. I will track down who I need to be speaking to about the information going out on the same letter. It sounds so simple it's amazing it hasn't been thought of before.

    Here's hoping we can all make this change happen

    Chris xx

  • Brilliant, simple

    xxx

  • This is so important and I guess its down to us to get the ball rolling, I have been stunned of the amount of women who have asked me personally how I knew that I had OV cancer or what was my symptoms? Women of all ages have asked. It was an alarming figure of ladies who just didn`t have a clue. Very worrying I have to say!!!

    xxx

  • May I also add that just because you may have a history of only the one family member with OV or breast cancer, does not mean that you cannot be at risk of having the inherrited gene. Everyone should be entitled to genetic testing if they ask about it and every women that is concerned about getting breast or ovarion cancer in their life time should also be told about genetic testing. I was ignorant to this fact and it may have spared me from the Ov cancer.

    I tersted positive and so have my two daughters, I had one family member who had OV cancer (my mother) and no family history of breast cancer, unyet my risk of Ov was running at 50% and B C 80%. We need to educate all women about this too xxxxxx

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