When I started at Jo's Cervical Cancer Trust in 2008 high profile media personality Jade Goody had just been diagnosed with cervical cancer. It sent shock waves through the UK and it was a steep learning curve for me in understanding the public's perception and understanding of the disease.
Jade's battle and subsequent death had a profound impact on attendance of screening. In 2008/9 an extra half a million women had a cervical screening, this was significant as annually one in five women fail to take up their invitation each year. Subsequent data showed that the majority of these women were young - a positive thing as for women aged 25-29, one in three failed to attend screening. However, the Jade Goody effect was shown to have little or no impact on encouraging older women to attend. It may in fact have reinforced the notion that cervical cancer is a disease that affects only the young.
Many of the women who use our services - call our helpline, put a question to our Ask The Expert panel - are generally under 40 years old. What we see less often, is older women reaching out for support or information. In fact we have found that many women over the age of fifty see cervical cancer as a young woman's disease. Whilst it is the most common cancer in women under 35 it's important that it is also recognised as a disease that can affect anyone that has been sexually active.
Over a third of diagnoses of cervical cancer are in women over 50. One thousand women lose their lives every year to this disease, 50% of which are women over 64. Sadly, a woman diagnosed after 50 is more likely to have an advanced stage cervical cancer with 49% of women aged 50-64 diagnosed with stage two or worse. Perceptions need to change in order to save lives.
Cervical screening is the most effective way of preventing cervical cancer yet tens of thousands of women over 50 are not taking up this opportunity every year with an average delay of four years. One of the hardest parts of my job is speaking to women who are diagnosed with this disease, perhaps with advanced cancer, who delayed their screening. The regret and frustration they have knowing it may have picked up abnormalities before ever reaching cancer is devastating.
So why are older women not attending screening? Perception and knowledge of the disease is one reason. In addition to views that it is a young woman's disease, many of those questioned by the charity didn't know what caused it, and when the Human Papillomavirus (HPV) was revealed as causing 99.7% of cervical cancers, there was considerable confusion over a woman's risk of having HPV.
HPV is a very common virus. 80% of us will be infected with genital HPV during our life and most of us won't ever know we have had it clearing the virus naturally. It is transmitted sexually through genital to genital contact. There is little research around this virus but studies suggest that it can lie dormant for many years. When the virus is active it can lead to cell changes on the cervix which can take between five and 20 years to become cancerous. This means that if a woman hasn't been sexually active for decades, or has been with the same partner for many years, she is still at risk of developing cervical cancer.
I have spoken to healthcare professionals and our community who have said that some have found screening more painful since growing older and in particular going through the menopause. There are ways that the sample taker can make it more comfortable and I would urge those putting it off because of this to speak up rather than throw their letter away.
We are now looking at other ways to screen women. We would like to see more research into HPV self-sampling after 53% of older women who have delayed a screening said they would prefer to self sample at home. Identifying who has HPV and is therefore at risk of developing cervical cancer removes the need for cervical screening for those where it is not present and allows the NHS to monitor more closely, those at a higher risk.
This week is Cervical Screening Awareness Week and if you only do one thing this week why not ask your friend 'are you up to date with your smear test?' or, check when you last had one. If you are overdue, book the test. If you are worried, speak to your GP or nurse, or contact Jo's Cervical Cancer Trust. It's a five minute test that could save your life.