Reaching out to those with OVCA

The Ovacome team is to be congratulated for setting up the new format of this website.

However, it is disappointing to see that it is very under-utilised. Since April 2010, there are only a few posts on the Helpvine section. This is surprising, since there are nearly 7000 women newly diagnosed with OVCA every year in the UK, so where are they? Most women have no idea about OVCA and this explains the shock of receiving an OVCA diagnosis which characteistically follows a delay in seeking treatment and a misinterpretation of signs and symptoms. With no approved screening programme for OVCA, more needs to be done to raise awareness.Those women who attend for breast screening are also encouraged to carry out self examination of their breasts on a regular basis. Women who attend for cervical screening often believe that this identifies any gynaecological cancer. Should these visits be the opportunity for health professionals to initiate advice about the signs and symptoms of OVCA?

9 Replies

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  • I only discovered this blog last week, I have been making comments through facebook and find many people react there. In answer to your question, yes I believe they should. I am aware of ovarian cancer because I lost my sister to it a year ago. As a result myself and my other sister who were based in Holland attended our GPs and asked to have a CA125 test and an ultrasound. Both our GPs expressed the fact that these tests were not very helpful as they will not predict if there will be problems in the future. We both insisted that at least it would help to prevent late diagnosis! Since then I have moved back to Ireland and when I tried to arrange a similar test a year later here I had the same reaction from the GP. So not only do we have to fight for information but also to be able to have GPs approve these tests!

  • Keep on trying to get through to your GP, Gillian, explain the frustration you feel. I had OC nearly 8 years ago, and my younger sister went to her GP and asked for a regular CA125, which she gets, yearly. There are precedents! I know the CA125 can be raised through other symptoms, and is not always a reliable indicator, but if you put that with some of the BEAT symptoms, and your sister's medical history, I'm thinking you'd be offered an ultrasound if you had serious concerns. Good luck, and remember, there's not that many genetically-linked cases.

  • I agree, it's slow progress! I had OC in 2002 and I'm ok so far. When I retired from workI became a ROCC and we do what we can to raise awareness. This year I sent and hand-delivered about 30 info packs, containing "BEAT friendly surgery" posters, to local GP surgeries. I have only had one report of a poster displayed! Maybe there needs to be more suggestions from managers! I work closely with our local gynae/oncology specialist nurse and together we're trying to put forward some ideas for GP training at my local hospital. However, us ROCCs are hard at work, on an individual basis, raising awareness where we can by visiting women's groups, businesses, hospitals and anywhere we can get the message heard. As well as that, we contact local newspapers and radio stations. Any more ideas, please let us know.

    Wendy

  • I am currently off work having chemo for OC having been diagnosed in April this year. We are fortunate to have a works doctor and one of my work colleagues has been in discussions with him and our Human Resources to have CA125 tests for the women in the company. After the initial "it costs money!" she has managed to secure this and they are all being tested this month. Hopefully this will be a yearly occurence.

  • I must admit, when I went to my (lady) GP with cystitius and mentioned some discomfort after making love with my husband the first thing she did was a CA125. After my diagnosis my sister also got her doctor to check hers, with no problems. One of the male doctors in the surgery has since told me he would not have taken that action, and as I told him 'she saved my life then'. He had no answer.

  • I have 2 female GP friends and both have told me that they have changed the way they treat women who come in with abdominal/pelvic symptoms since my diagnosis with OVCA. They order far more CA125 tests 'to be on the safe side', and have already had 1 positive OVCA diagnosis as a result. I saw 3 different GPs in the practice in 3 weeks and was lucky that the 3rd was young and up to date and noticed the trend in the symptoms. I took a BEAT poster in but it has still not been put up in the surgery.

  • I think it would be an oportunity to advise about signs and symptoms of OVCA. I would also like more information for women who have had Breast Cancer on the possibility of this being followed by OVCA. In my case 4 years later. I now know this can happen and I think it would be a good idea to make it known.

    Dorothy Petty ROCC

  • I was diagnosed 12 months ago and found the ovacome site very helpful both in finding out accurate information and in contacting others in a similar situation. Whilst I think Helpvine is good I also think that running two forums is somewhat confusing especially to newly diagnosed women who are desperately seeking answers. I check both the Forum and Helpvine to see if there are new posts and answer where I can. Would it be possible to amalgamate the two areas so that all the advice and friendships are in one place?

    The need to educate not only women but also gp's about ovca is a huge task - the BEAT poster is now displayed in my gp surgery and I know that they too ask for more CA125 tests 'just in case'. I am pleased that they have taken notice and have changed their response to women presenting with possible ovca symptoms. It would be good to see teal as well recognised as pink!

  • I only discover the blog recently as I was talking to my consultant saying that there is nothing in our area For support and speak to others in the same position and also I had not heard of oc till I got it

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