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Thousands of women suffering with unmet physical and psychological needs after cancer

Wed, 20/09/2017 - 08:23
  • Two thirds of cervical cancer patients burdened with at least three often debilitating problems with many not receiving treatment

A new report by Jo's Cervical Cancer Trust has found women affected by cervical cancer are dealing with multiple, long term consequences of their treatment. Two thirds (63%) of women have experienced at least three, and a quarter (24%) six or more potentially life-changing physical problems including with bowel (54%) or urinary (54%) function, pain (52%) and negative impact on their sex life (67%).

An estimated 49,000 women are living in the UK with or beyond cervical cancer and this research, the largest known dataset of women affected by the disease, has confirmed that thousands have faced, or may still be living with, pain, depression and changes to bodily functions that are distressing, debilitating and can have a long-term, negative impact on quality of life.

One of the starkest findings is an unmet need for treatment and support for these resulting difficulties with worryingly high numbers saying their emotional (75%) and physical (70%) needs had not been fully met. Significant numbers affected by each physical problem had not spoken to a doctor, often putting up with bone problems (64%), lymphoedema (60%), pain (44%) and urinary problems (42%). Women reported simply accepting the conditions, being unsure of where to seek help, not wanting to bother anyone and being fearful of finding out what was wrong. Others reported being told there was nothing that could be done to help them.

Robert Music, Chief Executive, Jo's Cervical Cancer Trust said: "It is shocking that so many women are suffering with chronic, often life-long conditions without benefitting from diagnostic and therapeutic methods that could significantly alleviate their suffering and increase their quality of life. It is essential that the longevity of the impact of diagnosis and treatment is fully recognised and understood to ensure problems are identified and addressed whenever they occur. Women need to be given a voice, to feel empowered to ask for treatment and support, and to challenge when they do not receive this. A fifth of women agreed with the statement ‘I feel that cancer has changed my life permanently so it will never be good again’. This simply should not be the case."

Paula Sherriff MP, Chair, All Party Parliamentary Group on Women's Health said: "10 year survival for cervical cancer is now at 63% and we must strive to enable women living with and beyond a diagnosis to have the best quality of life possible. Greater recognition of the long term problems diagnosis and treatment can bring is needed to ensure that women are receiving much needed treatment and support. It is not enough for women to be simply treated and discharged, we must ensure they can live well."

Further findings of the report include:

  • Many problems present for the first time a year or more after initial treatment[1] and the further women are from treatment, the greater the number of problems experienced[2]
  • Psychological issues are widespread[3] but more pronounced among young women: 79% of 25-34 year olds have felt blue, sad, down or depressed (all ages; 57%) and 72% anxious (all ages; 57% )
  • Impact on work life is significant with over half (60%) of those who reported a change to their work life saying it was a direct result of their diagnosis and treatment
  • Care received before and during treatment was rated highly however only 35% felt their treatment team had met all of their needs, dropping to less than a quarter (23%) for 25-34 year olds

The charity is urging for greater recognition of the far reaching and long lasting problems a cervical cancer diagnosis and treatment can bring. It is calling for the development of a national tariff for the long term consequences of cancer to ensure they are recognised as part of the post treatment care pathway. This would facilitate prompt diagnosis, better treatment and incentivise research into this highly neglected area, not only benefiting cervical cancer patients but thousands of patients across many cancer types. A further recommendation is for the national metric of quality of life, currently being piloted for more common cancers, to be swiftly rolled out to less common cancers which will provide better opportunities for early intervention from diagnosis onwards and ensure the needs of those living with and beyond cancer are met.

Laura is 32: "I was diagnosed with stage 2b cervical cancer last year 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 the hospital setting, 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."


For further information, comment or case studies please contact [email protected] or call 020 3096 8100 / 07772 290064

About Jo's Cervical Cancer Trust

Jo's Cervical Cancer Trust is the UK's only charity dedicated to supporting women and their families affected by cervical cancer and cervical abnormalities. The charity campaigns to increase awareness of the disease and bring down numbers diagnosed through promoting the cervical screening and HPV vaccination programmes. The charity’s national Helpline is on 0808 802 8000.

[1] 28% of women affected by lymphoedema, 26% affected bone problems and 15% with urinary difficulties experienced the problem for the first time at least a year after treatment

[2] High numbers of women 10-20 years since diagnosis have experienced difficulties with their sex life (93%), urinary function (68%) and bowel function (74%)

[3] 44% have experienced anxiety, 37% loss of confidence and 37% depression.