More and more women in the UK are now surviving cervical cancer, but its long-term effects remain life-changing, as Rebecca Shoosmith explains.
Over 3,200 women receive a life-changing cervical cancer diagnosis each year in the UK. It is the most common cancer in women under 35; however, it affects women of all ages. It is estimated that there are around 49,000 women living with and beyond a cervical cancer diagnosis in the UK today, and with more women (63%) now surviving ten or more years, survivorship is more important than ever.
Living beyond a cervical cancer diagnosis
In 2017 Jo’s Cervical Cancer Trust, the only UK charity dedicated to women affected by cervical cancer and cervical abnormalities, released a report, ‘The long term consequences of cervical cancer and its treatment’, which aimed to better understand the profound impact of living beyond a cervical cancer diagnosis.
Women who had participated in the National Cancer Patient Experience Survey (2010 – 2015) and had agreed to be involved in future research were contacted, and an online survey, using the same question set, was available throughout the data collection period.
The full report compiles the experiences of 688 women more than a year since diagnosis, and we believe it is the biggest ever survey into this specific subject matter to date.
Long-term consequences of treatment (also known as late effects) can begin during or immediately after treatment or may only appear for the first time many months or years later as a delayed response to treatment. These effects are likely to continue for many years or even the rest of a woman’s life. They can be life-changing, distressing and complex.
Our research showed that 88% of women have experienced at least one long-term consequences, 63% at least three and 24% at least six physical long-term consequences. The five most common consequences are changes in sex life (67%), fatigue (64%), menopause (56%), bowel difficulties (54%) and bladder difficulties (54%).
What support is available for survivors of cervical cancer?
One of the most concerning findings is the number of women who have not sought medical advice about the difficulties they are experiencing. Due to the intimate nature of these difficulties it can be an extremely embarrassing and a difficult subject to talk about and may contribute to them not being addressed. This means that thousands of women are currently suffering alone with the consequences of their treatment.
Staggering numbers of women who have experienced negative changes to their sex life (59%) or are suffering from changes to their bowel (39%) or urinary function (42%) had not told a doctor. Under two thirds (59%) of those affected by early menopause or related concerns had also not talked to a doctor.
Those women who received support for their long-term consequences received it from a healthcare professional, whether a GP, oncologist, specialist nurse or specialist doctor. Some women reported receiving support from non-professional sources, such as family or friends. However, it is of concern that over a third of women (37%) reported that the support they received met only some or very few of their needs.
Another striking finding of this research is that the emotional impacts of diagnosis and treatment are being largely neglected. 34% of women reported that their emotional needs had not been addressed at all and only 25% could say they had been completely addressed.
It is unacceptable that so many women, many from a young age, are suffering for decades from the consequences of cervical cancer without accessing treatment that might improve their quality of life.
It is essential that medical professionals are aware of the devastating and wide-ranging consequences that women may be experiencing and ensure they create opportunities for women in their care to raise their concerns, providing prompts if necessary. The right questions need to be asked in primary and secondary care settings to ensure that women are getting the vital support that they require and are not being left to deal with the potentially devastating consequences of their treatment alone. The impact on emotional wellbeing must be addressed.
There are many services that exist to treat or mitigate the consequences reported, including those offered through charities and the NHS; therefore, it should not be the case that women do not receive access to them.
How should we move forward?
As a result of our report we’re calling for increased awareness about the far-reaching, long-term consequences of cervical cancer to ensure women are receiving the treatment that they both need and deserve.
NHS England and NHS Improvement must introduce a national tariff for the management of long-term consequences of cancer. This would drive investment in interventions and treatments to ensure that there are services available for women. It would also promote research, improvements and adequate training in this relatively unexplored field.
A recovery package should be available for each patient to support professionals in delivering patient-centred care, helping to identify and address changing needs early. Furthermore, a treatment summary with details of all treatment received, potential symptoms and key contacts encourages seamless transition from secondary to primary care, ensuring a joined-up approach to long-term care.
The swift implementation of the new ‘quality of life metric’ to rarer cancers would also provide a clear imperative for healthcare providers to support people to live well after treatment and highlight areas where improvements in cancer care are needed.
Women with cervical cancer should also be informed about Jo’s Cervical Cancer Trust at the point of diagnosis, with a reminder at the 12-month clinic appointment. We believe that it is not just the role of the clinical nurse specialist, but that all healthcare professionals at all levels have a responsibility to inform patients about relevant or additional services available to them through external providers such as Jo’s Cervical Cancer Trust.
Jo’s Cervical Cancer Trust will continue to campaign for the above-mentioned recommendations to be implemented. It is not enough for women to be simply treated for cervical cancer. Women living with and beyond the disease should have the best quality of life possible so they do not just live, but live well.
About Jo’s Cervical Cancer Trust
Jo’s Cervical Cancer Trust was founded in 1999 by the family of Jo Maxwell. Jo sadly lost her life to the disease but found a lack of information and support available.
Our vision is a future where cervical cancer is a thing of the past, but until then we want to reduce the impact for everyone affected through providing the highest quality information and support, and campaigning for excellence in treatment and prevention.
To read the report and recommendations in full, visit www.jostrust.org.uk/longtermconsequences.
“I was diagnosed with stage 2b cervical cancer needing chemoradiation and brachytherapy, but soon after I received my all clear results my health started to deteriorate. I went to my GP over and over about fatigue and bladder problems but was told it had nothing to do with my cancer treatment and, even at one point, that nothing was wrong. I felt very low and started to think I would just have to live with it. I was eventually referred to a gynaecologist who explained I was experiencing side effects from my treatments and that I needed further operations. I was so relieved that finally someone knew what the problems were. I’m a nurse so pushed hard to be seen by a specialist, but if I wasn’t I might just have taken my GP at their word. I have been lucky to have had great support, but I did find that at times when I was upset, especially in hospital, I would just have the curtain pulled round me or be left to it as people didn’t know how to react. It’s made me anxious about what’s coming next.”
“After I finished my treatment there was little support for my emotional needs. I think my emotional needs became greater several years after treatment, as the impact of the cancer on my life didn’t really hit me till then. I find friends and family have no understanding as the long-term effects are not always visible or obvious.”
“On reflection, after treatment and diagnosis, I feel that I was not given all the information about next steps and what ifs. Each stage was dealt with individually and I would have appreciated more of a complete overview.”
Deputy Chief Executive
Head of Support Services
Jo’s Cervical Cancer Trust
This article will appear in issue 5 of Health Europa Quarterly, which will be published in May.