‘If I wasn’t checked at 20 I might not even be here’: Meet the women fighting for the cervical screening age to be lowered
Women currently have to be age 25 and above to receive a smear test
by Lucy Woodham
Currently in the UK, women aged 25-49 are invited by their GP to have a smear test, now commonly called a cervical screening test, every three years.
Cervical screening tests and the age the service should be provided have been in the limelight in recent years. The campaign for better awareness of testing rose after the death of reality star Jade Goody in 2009, who was diagnosed with cervical cancer. Since then, there has been wide coverage of cervical screening tests, from Made in Chelsea’s Binky sharing her story, to reports of young women dying due to late discovery of cancer cells.
As a result, campaigners have started to petition for the cervical screening age to be lowered from 20, 18 or even 16. The testing age up until 2003 was 20, however the NHS argue early screening does more harm than good. A large proportion of young women will test positive for ‘abnormal cells’ in their cervix caused by the human papilloma virus (HPV), which is contracted through sexual contact. The majority of these cells or cysts are harmless and will disappear over time, therefore cervical screening is not always the best method of prevention. But for a minority of women, it can be the start of something more serious, even deadly.
If a women under 25 finds a cyst and wants to have it checked out, it can take months for her to be eventually screened, or she might have to pay a fee. This can lead to unwanted panic and anxiety in the woman who is none-the-wiser that the problem could potentially be harmless, or potentially life-threatening.
We spoke to young women who have faced cancer scares from not being able to get a cervical screening because they were too young, and are now fighting for the test age to be lowered.
Taylor, age 21 when diagnosed with stage 0 cervical and vulva cancer
When I was 21/22 I started exhibiting external symptoms. Being a woman of that aged you are assumed to be a bit on the promiscuous side, so I kept being directed to the sexual health clinic. I was, and still am, in a long term relationship therefore it was a difficult one to keep trying to explain to my parter.
I must have visited six times complaining that this “thing” was getting bigger, which they kept saying it was a ‘skin tag’, before they eventually agreed agreed to do a biopsy. It was absolutely only on the off chance that the doctor I had that day agreed to smear test me when I asked, she said “if this is what I think it is then yes it’s best we smear test”
The external biopsy came back with VIN3 (stage 0 vulva cancer) and the smear CIN3 (stage 0 cervical). From there I was no longer treated as someone who didn’t have sex irresponsibly but an adult, a woman whom potentially had a life threatening disease.
I went on to have a cone biopsy which removed part of my cervix and I have two/three operations a year to keep on top of the external problem. If I hadn’t got the VIN3 and been smear tested at 22, I would have gone minimum of three years carrying something that has an 80 per cent chance of turning into full blown cervical cancer – I could literally be dead.
Orlagh Robson, whose sister, Sorcha Robson, died age 23 from cervical cancer
Sorcha Glenn passed away on the 24th October 2014 aged just 23 following a 13-month battle with cervical cancer. Sorcha had the HPV vaccination whilst at school. She attended her doctors in June 2013 to ask for a smear test, as she felt something wasn’t right with her body. Sorcha was advised that smears aren’t routinely done until a woman is 25 and was refused a smear test.
Then come August 2013, Sorcha started to experience abnormal bleeding between periods and suffered pelvic cramping, so she went back to her doctors, who then did a smear test. While the test was being carried out, Sorcha’s doctor noticed a mass on her cervix. At the time they thought this could be a cyst, and Sorcha was sent for a biopsy.
On the 9th September 2013, she was told she had cervical cancer.
Over the next 13 months Sorcha faced challenge after challenge. She opted to freeze her eggs for the future, and then underwent six rounds of chemo and 36 radiotherapy sessions and brachytherapy. However in January 2014 a scan revealed 12 swollen lymph nodes, so Sorcha underwent an operation to remove and test some of them. At the time these came back clear.
But then in March 2014, a PET scan revealed the lymph nodes were still enlarged. Following this Sorcha underwent a full radical hysterectomy and full pelvic lymph node clearance. Sorcha was then due to embark on another course of chemo treatment.
As Sorcha started this chemo treatment; just weeks into it, it was found her kidneys were enlarged and the cancer had reappeared in her lymph nodes. Sorcha contracted numerous infections in her blood and had to have numerous blood transfusions, all that lead to delays in treatment. Over the coming months the lymph nodes continued to swell with cancer, pressing on the nerves on her lower back and leaving her immobile and weakening her body.
Sorcha continued to fight right until the very end, but passed away peacefully holding her beloved boyfriend Matt’s hand on 24th October 2014.
She was so inspirational, brave and positive throughout her treatment and illness, and continued the whole time to raise awareness of cervical screening in young people, and hoped to enable those who request a smear test to be given one without age discrimination and to reduce the age of screening from 25 years old to 18 years old. We hope to continue with this legacy.
Charr, age 21 when a large benign cyst was found
I had a cyst that ended up being benign, but I had to wait three months for an appointment to find out if it was or not when a smear could have told me in under a week. I waited to have the smear on the NHS because I’d have had to pay around £250 for it privately. So for three months I literally didn’t know whether this cyst was something really bad.
I felt horrendous – the first thing you think when you hear ‘large cyst’ is cancer, or you start thinking about infertility later on down the line. Having to wait that long to find out made it so much worse as my brain had so much more time to go into over drive and think about what could be wrong.
In the end it just went away on its own. I 100 per cent advocate for the smear age to be lowered, it’s an absolute no brainer.
Sarah, age 20 when doctors found potentially cancerous cells
In Scotland the smear test age used to be 20. I got my smear test at this age and it detected problems. I had abnormal cells which could have lead to cancerous cells.
I had to go every six months to have them checked – I remember crying after one biopsy as my stomach was cramping so badly after. I’ve been discharged from hospital now but I’m nearly 26 and require to have a smear test once a year now due to the problems I’ve had until I have five clear tests.
They’ve now upped the age in Scotland to match England and Wales, which I think is wrong as by 25 it’s too late for some girls. From my experience, if I wasn’t checked at 20 I may either have cancer now or not even be here.