Watch out for Ovarian cancer research in the Lancet tomorrow: take part in research for the Eve Appeal

[TornacLiz]

Dear online community

I have just been filmed by Sky News (as exhibit A, cancer patient, human interest) about some ovarian cancer research that will be published in the Lancet tomorrow. I can't say more because it is embargoed but this may be quite a big story. Do pass on the findings to your friends for whom it may be relevant.

I also took part in a focus group for the Eve Appeal. They are now looking for more people. I've pasted part of their letter to me. I do encourage you to participate. Eve is looking at various ways to support women and in particular to improve early diagnosis. One of the things they are considering is a help line which I think would be great. Our group also pointed out that many women feel very isolated and more could be done to help people to meet others and share experiences - as we do here.

See extract from their letter:

We would like to conduct some additional research with women experiencing gynaecological cancer to explore the journey from symptom to diagnosis to treatment and wonder whether you know anyone who would be willing to talk to us? Discussions will take the form of short, telephone interviews with individuals at a time that suits them. Ella and Ellen from The Ladder Consultancy will be conducting the interviews. Interviews are expected to last around 30 minutes.

We would be most grateful if you could speak to anyone you know, or forward them this email, to see if they would be interested in taking part. If they are, please ask them to contact Ellen directly at [e-mail] or by phone on 07932 670992.

Thank you in advance for any help you can give us.

The Eve Appeal

eveappeal.org.uk

Perhaps if you do contact them, you might mention that you heard about them via this forum as I said in the focus group that communities like this are helpful!

And finally, very warm best wishes to all on this site for 2015. I wish you as much health as possible and certainly happiness. Liz x

[Hidden]

Thanks for the information Liz. Hopefully, women will be able to make more informed choices now.

Wishing you the same.

Sue

[Hidden]

Good to meet you the other day...

And this is a much better way of sharing the opportunity than my measly little email.

And hoping the Lancet is worth waiting for!

xxxx

[TornacLiz in reply to Hidden]

Ah ha! So pleased we have made contact here now. It was great to meet you too. And very good luck with your appointments. I am really rooting for you. Sadly the Lancet piece is not much help for us. It says the risk of getting ovarian cancer when you take HRT is much higher than previously thought. Headlined as 40% increased risk but what that actually means is that 1 woman in 1000 will get OC after having HRT. Do pass that message on if you know anyone considering HRT. I have not seen myself on Sky so far but I had a few seconds on the Today programme. Do keep in touch and I'll be thinking of you. x

[Hidden in reply to TornacLiz]

Belatedly.... you've been doing a great job getting in all the views as exhibit A.

I had a couple of worrying weeks after we met as CA 125 had tripled when I had my appointment. Had to postpone trip away and have CT scan which mercifully showed no sign of recurrence. I only have 6 weeks reprieve however, so am keeping fingers crossed that it comes down during that time. But am now in France with my mother and forgetting all about it (!). Not had internet access for a few days and I found that I wizzed through the HU posts much quicker than usual. Perhaps the thing to do is to ignore them and then have a brisk whizz through every so often?

Hope we meet up again some time!

[ginger69]

I will contact them, and give them my story!

Thank you Janette x

[TornacLiz in reply to ginger69]

Thanks very much Janette!