Impact on women diagnosed with cervical cell changes

Women diagnosed with cervical cell changes are unprepared for the experience, feeling ashamed, isolated, and frightened: New research by Jo’s Cervical Cancer Trust, released today, shows thousands of women in the UK know little or nothing about cervical cell changes prior to being diagnosed with high numbers feeling ashamed. Around 220,000 women are diagnosed every year following cervical screening, however over a quarter (26%) of the 1,086 surveyed said they felt ashamed when diagnosed. This was particularly pronounced in younger age groups (40% of 25-29 year olds: 8% of 60-64s).

Human Papillomavirus (HPV) causes cell changes. Cervical screening can help prevent cervical cancer by identifying any infection and cells which have changed (become abnormal). The cells can be monitored or treated to stop cancer developing.

Over 70% (786) recalled having a HPV diagnosis. For many this made the experience of cell changes far harder. High numbers expressed feelings of guilt, confusion, and anger or concerns about relationships and infidelity as a result. A third (34%) of these said it made them anxious or worried and 35% spoke of shame, embarrassment or feeling dirty.

This reflects what Jo’s Cervical Cancer Trust hears through its services, where calls about the virus make up 50% of those to the Helpline. In its new report, the charity is calling for far greater education and conversation about HPV to reduce the impact a diagnosis can bring.

Samantha Dixon, Chief Executive, Jo’s Cervical Cancer Trust: “It should not be the case that shame is connected to cervical screening results in 2022. HPV stigma is something that needs to be tackled and it’s up to all of us to remove the stigma attached to having a diagnosis. Far more needs to be done to ensure everyone attending screening is fully prepared for different results and has the information they need to deal with them, because cervical cancer prevention doesn’t stop at cervical screening.”

A fifth (21%) said they felt isolated following their diagnosis, with many not wanting to tell others. The charity warns that the pandemic is exacerbating this, with many attending appointments by themselves. Feelings of isolation doubled during the pandemic (29% diagnosed in the pandemic reported feeling isolated, compared to 15% before).

More than half (51%) of the 1,086 said they knew nothing about cell changes prior to their diagnosis and 39% knew ‘a little’. 44% said they had not been told what the potential results could be at their cervical screening appointment.

The charity is highlighting that the impact of the pandemic means cervical screening uptake is at its lowest in decades. National statistics show almost 1 in 3 are not attending when invited. The charity is urging women and people with a cervix to book an appointment if they are overdue, while calling for greater action to increase understanding and reduce anxieties of potential results.

Samantha continues: “Cervical screening can help stop cervical cancer before it starts so we cannot afford to let attendance continue to fall in such worrying numbers. Please remember the NHS is well and truly open, so if you are overdue screening or have a colposcopy appointment we urge you not to put it off. If you have questions or need support, then do contact our Helpline.”

Treatments offered in colposcopy are safe and highly successful. They are provided to prevent cervical cancer, where far more invasive treatments are often needed. However, high numbers reported feeling uninformed and rushed through their diagnosis and subsequent care. 42% did not feel that they had enough time to consider their options or make decisions, while 29% didn’t think they had enough information and support to understand the benefits and risks of treatment. 28% experienced side effects that they either did not expect or were more severe than anticipated. Concerns about fertility were also found to be disproportionate to the risk, highlighting a need for greater information and support to reduce anxieties in those looking to have children.

A further finding is variation in care. The charity is calling for more guidance and standardisation in areas such as provision of information and pain management.

Dr Edward Morris, President of the Royal College of Obstetricians and Gynaecologists, said: “We understand that receiving a HPV diagnosis can be distressing, but this diagnosis is a vital part of preventing cervical cancer, and is an important step in identifying what further treatment may be needed. It is worrying that cervical screening uptake is falling. It is vital that anyone who is invited to a cervical screening attends their appointment and feels supported to fully understand what a diagnosis might mean. Increasing education and awareness about HPV will help remove stigma, and better prepare individuals to attend their screenings.”

Jo’s Cervical Cancer Trust are using their campaign week, Cervical Cancer Prevention Week (17-23rd January 2022) to raise awareness of cervical screening, encourage attendance and increase understanding about potential results.

Tonia Antoniazzi, Member of Parliament for Gower, Chair of the All Party Parliamentary Group on Cancer: “We have an incredible opportunity to one day eliminate cervical cancer, and while cervical screening lies at the heart of this, cancer prevention goes beyond screening. We must recognise the importance of diagnosing, monitoring, and treating cervical cell changes, and ensure everyone is supported at every step. No one should feel that they don’t have the information and support to access cervical screening or deal with an unexpected result.”

Rachel, 34 from Brighton, was told she had cell changes in November 2020:

“I had to have a LLETZ treatment to get rid of my cell changes. At first I went straight to Google and found some horror stories about cervical cancer. I began thinking quite irrationally – if you have kids, you can really go to a bad place in your head with worry about what might happen to you! I didn’t know what to expect at all. I had worked myself up a bit as I did not like how LLETZ sounded! The nurses were brilliant and explained everything while holding my hand.

I had a follow up appointment, which was much harder as no one was really talking to me during it and it was more painful. At times it felt like the end of the world, but it’s all about preventing something worse from happening. I never knew anybody else who had cell changes, but once I started speaking out about my experience, my sister told me she had the same thing but she had never mentioned it. We need to talk about it more so that no one feels alone, and everyone knows where to get support.”

Laura, 33 from Manchester, was told she had cell changes and HPV in 2021:

“I was diagnosed with HPV and abnormal cells and was referred for a colposcopy at hospital. I cried all morning as I thought this meant that I had cancer. I don’t think I’d ever spoken to someone who had had the same experience, and I definitely didn’t know what it meant. The HPV part was really hard, lots of people still feel like HPV is taboo and won’t discuss it. I even thought I might not go to my colposcopy as it was so daunting at first. But I am really glad I did. The colposcopist was very calming, she explained that there were around 11 different speculum types and they can provide numbing cream, and gas and air, so it was more comfortable than I imagined it would be. I had a biopsy and have to have regular checks to see if the cells clear naturally as I didn’t need treatment. I am just so pleased that the NHS is looking after me and that I went for my smear test in case they had a chance to turn into something worse.”

1 https://digital.nhs.uk/data-and-information/publications/statistical/cervical-screening-annual/england—2020-21

Survey published in July 2021 through SurveyMonkey and gained 1768 responses. 1086 were residents of the UK with an experience of cervical cell changes
The report can be found here: https://www.jostrust.org.uk/node/1082898