I was diagnosed with cervical cancer AFTER my smear came back clear – now tests has changed, you might not be so lucky

I was diagnosed with cervical cancer AFTER my smear came back clear – now tests has changed, you might not be so lucky

September 18, 2020

WHEN Katie Hirst was diagnosed with cervical cancer two years ago, her whole world fell apart.

But the 26-year-old from London says she actually considers herself lucky as had she gone for her smear test any later the deadly cancer would not have been detected.

The NHS has now changed how they test for cervical cancer meaning that Katie’s tumour would never have been detected.

Here she speaks exclusively to Fabulous Digital about her petition to have changes made to cervical cancer screenings, and her terrifying ordeal.

Sitting at my desk I saw the four words that would change my life pop up on my screen. I had stage one cervical cancer.

At just 24 it was traumatic to say the least, but actually I consider myself incredibly lucky.

I had my smear test just before the NHS made radical changes to its screening and had I gone just a month later, I wouldn’t have made it to my 30th birthday.

I went for my first smear test in February 2019, and my HPV test came back completely clear but luckily for me the NHS were still checking for cell changes with a cytology slide. 

My results showed that I had Cervical Glandular Intra-epithelial Neoplasia (CGIN) an abnormality in my glandular tissue which causes cancer, which the NHS will now only test for if you are positive for HPV.

Had I been for my smear test later, my CGIN would not have been picked up and I would have been sent away for another three years while unknowingly battling cancer.

CGIN is extremely hard to detect so I’m very lucky that my smear test even picked it up.

I hadn’t suffered from any symptoms and my periods were like clockwork but I noticed some abnormal bleeding and so I was keen to be tested.

They picked up on my cell changes and I was referred to the colposcopy department where they did two biopsies from the colposcopy department that both came back clear.

I remember getting the call saying my biopsies were clear and thinking ‘thank God I’m fine.’ 

But when I was told that there would be a multidisciplinary team meeting to decide what my treatment would be I knew I wasn’t fine.

It was awful but compared to other people I am extremely, extremely lucky

I went for the treatment where they took a larger chunk of my cells to try and remove all the abnormal ones.

A month later I finally got my results. 

I found out I had cancer at my desk at work, after my results were uploaded a day early.

I had expected to open them and discover I had the all clear, but my heart sank as I saw the words Stage One appear on the screen. It was traumatic to say the least.

I used to tell my friends I had a feeling that I would go for my first routine smear and end up with cervical cancer – but I didn’t think for a minute it would be the reality.

It was awful but compared to other people I am extremely, extremely lucky. 

What changes have been made to NHS smear tests?

In 2019 the NHS rolled out a new tests for cervical screening.

Nearly all cervical cancers are caused by human papillomavirus (HPV).

The test, which previously included a cytology, for replaced with more sensitive versions and HPV testing to try and catch the disease even sooner.

According to Public Health England compared to cytology, hrHPV testing has been shown to reduce the risk of developing cervical cancer through increased sensitivity for underlying disease

The report also suggests that this is a more "cost effective" way of testing for the disease.

In 2013, English pilots of primary hrHPV screening began and in 2015 the first report confirmed the feasibility of use and improved performance of primary HPV screening within the NHS Cervical Screening Programme (NHSCSP.)

Following an evidence review and public consultation the UK National Screening Committee (UK NSC) recommended the implementation of primary hrHPV testing to replace primary cytology and on 4 July 2016, the Public Health Minister announced the implementation across England.

The changes were rolled out in February 2019.

If you do not have high-risk HPV, your sample will not be looked at for cell changes. It is very unlikely you will develop cell changes or cervical cancer without having high-risk HPV. 

Cytology is now only used in Northern Ireland. It is the study of individual cells in the body. In cervical screening, this means that the cells taken during your appointment are looked at under a microscope for changes.

Robert Music, chief executive of Jo’s Cervical Cancer Trust, said: "With HPV testing being rolled out we now have a far more effective screening method which can prevent many more cancer diagnoses.

"Ensuring women can access and understand the benefits of this test should be paramount.

"Ensuring women fully understand what it means to be tested for HPV, to be diagnosed with it and implications on daily life is equally as important.

"We are seeing increasing numbers of women who are confused and fearful following a HPV test and this needs to change.”

Not only am I lucky that I went for my test when I did otherwise it wouldn’t have been picked up but I was also lucky that it was only stage one B1.

I do want to start a family one day and because of my age I was able to have a trachelectomy rather than a hysterectomy which was a huge relief.

This involved removing my whole cervix and as well as my pelvic lymph nodes in major open abdominal surgery. 

It was horrendous. I’ve never had surgery, I’ve never even broken my arm so for that to happen to me was bizarre and it didn’t really  hit me until I was with the anaesthetist. 

I had kept my composure the whole time and I just kept telling myself ‘I’ve got cancer, they’re going to get it out, it’s fine.’ 

But just before they put me under I completely broke down and the anesthesiologist held me and cried with me for ten minutes before I went into my surgery. 

I just kept thinking ‘I’m too young for this to be happening’, I was worried I wouldn’t wake up. 

I went into the surgery unsure whether I would come out with my womb as they warned me they would test the cells during and decide when and there whether to do a full hysterectomy. 

That was the most terrifying thing, not knowing if I was going to wake up having had a hysterectomy.

The first thing I said when I came round was ‘what have you left me with?’ 

I was left with a scar similar to a c-section and I couldn’t get out of bed for four days and had a total of seven weeks off work. 

But I wake up every day feeling extremely blessed that they only removed my cervix and a lot of women can go on to have children although it is much more difficult.

The same day that I was cancer-free, doctors reminded me that the hysterectomy is the gold standard and while they are hopeful it’s never going to come back I have to be vigilant with follow up appointments.

What are the symptoms of cervical cancer?

Early diagnosis is key when it comes to any form of cancer as it can increase the chance of survival – and cervical cancer is one of them.

Catch it at the earliest stage – stage 1 – and you have the highest chance of surviving it.

But get diagnosed at stage 4, and you've only got a 5 per cent chance of surviving five years or longer.

That's why it's absolutely crucial that you know what changes to look out for and get them tested ASAP.

1. Abnormal bleeding (during or after sex, between periods and also post-menopause)period 

The most common and earliest sign of cervical cancer tends to be irregular bleeding.

It happens when the cancer cells grow on the tissue below the cervix.

It's an especially alarming sign in postmenopausal women who no longer have periods. There's no age limit to developing cervical cancer.

2. Unusual vaginal discharge

Everyone's discharge is different, so it's a case of knowing what is normal for you.

If you find that the colour, smell and consistency has changed, then that's something you really need to have checked out.

When cancer lacks oxygen, it can cause an infection which leads to strange smelling discharge.

3. Discomfort or pain during sex

Pain during sex can be a sign of a number of different issues, but one is cervical cancer.

Because the disease often comes with no symptoms, pain during intercourse is one of the key indicators. It can be a sign that the cancer is spreading to surrounding tissues.

4. Lower back pain

It could be down to you straining something in the gym, or it could be a warning sign that something's wrong with your reproductive organs.

Persistent pain – just one off twinges – in the lower back, pelvis or appendix can be a symptom of cervical cancer.

5. Unintended weight loss

While effortless weight loss might sound like the answer to many of our prayers, it's never a good sign if it happens seemingly without cause.

A loss of appetite and unexplained weight loss tend to be signs that the body isn't working properly – it's trying to conserve energy. If you notice that you're not eating as you normally do, go to your GP.

I was horrified therefore when I discovered that a swab I had done in July would not include a cytology.

When I called to ask why they told me it was in line with the new screening programme, they confirmed that they are only now testing for HPV first. 

I didn’t have HPV but I had a tumour. The only thing that saved my life was the cytology and I had to kick up a real fuss to make sure they checked me for abnormal cells. 

I am still clear but what about all the other women that will be missed thanks to these changes?

I have now set up a petition in the hope that it will bring the government’s attention to how essential it is to test for abnormal cells.

I’m not one in a million, I’m not that special, there are lots of other women like me

In just one week I received over 6,000 signatures, and I have had dozens of women message me to say they were also HPV negative but had severe cell changes.

It terrifies me to think that someone could have a smear test, be HPV negative and sent away for three years. 

I’m not one in a million, I’m not that special, there are lots of other women like me, yes it is rare but there are still a number of us and we shouldn’t be ignored.

How could the NHS explain my death to my parents and my grandparents who would have gone to my funeral in five years' time if I’d had my smear test this year. 

I would have been sent away and I would have died.

You can sign Katie's petition here

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