When is a risk not a risk?

Eve supporter, Liz, blogs about her experience of the menopause and HRT following the National Institute for Health and Care Excellence (NICE) publishing guidelines for professionals and the public on HRT in November 2015.

The-Eve-Appeal-Blog-Liz-Aram
Liz Aram - diagnosed with Stage 3 Ovarian Cancer

In February 2015 it was headline news that the risk of getting ovarian cancer after hormone replacement therapy (HRT) had doubled. It sounded scary. As someone who had taken HRT and developed ovarian cancer I undertook media work for the Eve Appeal appearing on radio and TV.

The NICE guidance includes a summary of the evidence on health risks associated with HRT.  However, in the list of key conditions, breast is the only cancer that is mentioned. Why not ovarian? Because NICE considers the risk is low.

Nothing has changed between these two events. The risk of getting ovarian cancer from taking HRT is 1 in 1000. That means for every 1000 women taking HRT, one woman would be diagnosed with ovarian cancer as a result.

So – is that risk headline news or so low as not to warrant a mention?

NICE enables women to make that – evidence-based – decision for themselves. There is no right answer. It depends on how awful the symptoms of menopause are in relation to the risks – both generic and specific.

For me the issue was sleep deprivation. I had a demanding job; a son aged 10; and caring duties for an elderly mother-in-law. Night after night I would wake drenched in sweat. I felt I could not function. I did a lot of research and talked to my GP. The risks as stated at the time seemed worth the benefits. And indeed the effect was magical and almost immediate.

Why have I reserved 2.9 of my three cheers? Because, in the light of all the publicity about ovarian cancer, it would be helpful if NICE could specifically reassure women that the risk is low and make the research evidence more obvious in the guidelines. (I sought it in vain – it is apparently in a research footnote.) It can often feel like ovarian is the poor cousin to breast cancer. In fact, in this instance ovarian has not been ignored – rather the extremely rigorous NICE process has not deemed it a high risk. Explaining that could help to address this perception problem and will certainly help women like myself feel less guilty that they might have brought their cancer upon themselves.

That caveat aside, bravo NICE! And let’s encourage women to make the decisions that are right for them – with the facts at their fingertips.

Dr Tracie Miles, Gynaecology Cancer Specialist information Nurse for The Eve Appeal added: “This is a welcome review for professionals and public alike. Liz echoes the words of many, many women (and their clinicians) seeking reassurance that taking HRT to improve their overall wellbeing and quality of life will not be detrimental or disastrous.

“It might be helpful for women (and their general practitioners) to understand that taking unopposed oestrogen constitutes a cancer risk which is why she must take a dual preparation or protect her uterus with a progesterone inter-uterine device.”

The recent report, The Health of the 51%: Women, by Chief Medical Officer Sally Davies recognises obesity management, a core health and wellbeing topic, as being more challenging in menopause. The guidance encourages work-place education programmes to embrace, normalise and support the menopausal worker with symptom management.

The Eve Appeal will help support and signpost women to the areas of the guidance to enable them to see that the womb and ovarian consequences of treatment are described if not as obvious as breast.

We’re appreciative that NICE has recognised and fulfilled the information needs of women and clinicians alike in their latest guidance. We hope that this will encourage further dialogue between women and their healthcare professionals – leading to more understanding of this phase of women’s lives. So that’s 2.9 cheers from The Eve Appeal.