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Patients suffering in silence with side effects of cervical cancer treatment

Mon, 07/12/2015 - 10:38
  • World's largest study of late effects of cervical cancer treatment shows huge long term impact on bowel, bladder, relationships and work
  • More communication needed between healthcare professionals and patients

Significant numbers of patients are suffering in silence following treatment for cervical cancer because they fail to highlight issues to their doctors whilst medical professionals may not be asking the right questions. Specifically affected are those with bowel and bladder problems; those who have problems with their sex life; and those whose fertility has been affected. This is according to the phase one results of the world’s biggest survey into the long term effects and consequences of cervical cancer and its treatment.

The survey revealed that 46% of women surveyed have experienced bowel or bladder problems which have affected their day to day activities. Of these 50% had not told a doctor and only half received treatment; 56% had experienced changes to their sex life of which two thirds had not told a doctor and only 10% had received treatment; and just over one half of those with pain and /or fatigue had not talked to a doctor.

The high numbers of women with significant long term side effects has had a huge detrimental impact on both relationships and the work place. 50% whose employment status had changed said that this was a direct result of the cervical cancer diagnosis. In fact 36% stated it had had a negative impact on their ability to work. Furthermore over half said the diagnosis had lead to a negative impact on their ability to form and maintain a sexual relationship, whilst over 1 in 10 reported a negative impact on relationships with friends and other people.

Jo's Cervical Cancer Trust who commissioned the study is concerned that patients who are not receiving management and support services are prepared to simply learn to live with the long term consequences of cervical cancer treatment and not actively seek out services that are available. For those that have received management and support services less than 50% said these services met all their needs and 9% said they met very few or none of their needs.

There were also great disparities between emotional and physical needs being met with a high number of women stating they did not receive enough emotional support. Nearly half (45%) felt sad, down or depressed whilst 73% worried about the cancer coming back. Despite this, 75% did not receive any of the alternative therapies available such as counselling, mindfulness and art therapy.

Robert Music, Chief Executive of Jo's Cervical Cancer Trust said: "It is unacceptable that patients are suffering in silence with side effects that seriously impact their quality of life, especially when there are management and support services available. It's important that patients don’t feel embarrassed by problems such as bladder and bowel damage, and sexual issues.

"It is also vital that healthcare professionals ask the right questions to tease out the real problems as we know patients can often dismiss more serious problems in the doctors room hiding behind a mask of 'I’m fine'.

"The charity commissioned this research to ascertain the long term impact of cervical cancer treatment with the objective to improve care and support offered to these women. The results are worse than we were anecdotally aware of. We need to work with policy makers and health professionals to ensure women are both made aware of and offered better choices and care, and are adequately referred onwards. Communication between patients and health professionals also needs to be strengthened so that the correct issues are identified."

Ceri Twynam, who suffers from bowel damage since her cervical cancer treatment in 2010, said: "When I first got symptoms of bowel damage, I was worried that the cancer had spread. I lost confidence because of the frequent accidents I had due to my loose bowels, and was unable to work due to this and the pains that would often make me pass out. I’m a teacher, and it was difficult for my head teacher to understand that my issues were real and not just a ploy to have further time off work. It is one of those chronic illnesses that people don't understand. All in all it took me about nine months after treatment to go to my GP and tell her about the problems I was having.

"When I previously mentioned the side effects to oncologists I always felt like they didn't believe me or just didn’t know anything about bowel damage after cervical cancer treatment. Luckily, my GP was very knowledgeable and referred me to a specialist at the Royal Marsden who diagnosed exactly what damage had been done and how it might be treated. I now have to take a variety of pills each day, have regular blood tests to check vitamin and mineral levels and have to be very careful what I eat. Since being seen by him I feel more confident, and pleased that I wasn't imagining things."

For further information, comment or case studies please contact the media team on 020 7250 8311 / 07772 290 064 or email [email protected]

Ends

Notes to editors

Further statistics:

  • 75% women have not accessed management and support services:
  • 30% said they had learned to live with the concern
  • 26% accepted it as part of illness/treatment
  • 16% found it hard to ask for help
  • 14% addressed the concern on their own
  • Two-thirds of those who experienced negative changes in their sex life had not told a doctor
  • Just over one-half of those with pain and/or fatigue had not talked to a doctor
  • Only 21% of those with fertility problems had talked to a doctor
  • Half of those with menopause related concerns had talked to a doctor

The most common reasons for respondents not receiving any support services:

  • 30% said they had learned to live with the concern
  • 26% accepted it as part of illness/treatment
  • 16% found it hard to ask for help
  • 14% addressed the concern on their own

When it came to relationships:

  • Over half of respondents reported a more positive relationship with their family with just 8% reporting a more negative relationship with their family.
  • 11% reported a more negative relationship with friends with the rest reporting that it either improved or stayed the same.
  • Half reported a more negative experience of maintaining a sexual relationship.

About the survey

Jo’s Cervical Cancer Trust commissioned Quality Health to undertake a survey of women who had or were undergoing treatment for cervical cancer. The survey was posted to recipients between January and April 2015. In total 325 women responded to the survey in phase one. This was 55% of a total sample of 600 women. The sample was drawn from data used for the National Cancer Patient Experience Survey (NCPES) from 2010 and 2013. Phase two of the survey is currently under way and aims to take the sample size to 1,000 by the end of spring 2016.

Profile of respondents:

  • Almost 4/5th of the respondents (79%) were diagnosed between 2 and 5 years ago.
  • 32% of respondents were aged between 25 and 44; 45% were aged between 45 and 64; and 23% were aged over 65. There were no respondents who were under the age of 24
  • Most of the respondents (94%) were no longer being treated for cervical cancer, and 80% of these women were still under the care of a cancer treatment team. Of just 19 women who were still in treatment, most were being treated for a recurrence (54%)
  • Most women who had received treatment had received chemoradiotherapy (50% of respondents); brachytherapy (47%); and surgery (46%).

About Jo's Cervical Cancer Trust and cervical cancer

  • Jo's Cervical Cancer Trust (www.jostrust.org.uk) is the UK's only dedicated charity offering support and information to women of all ages and their family affected by cervical cancer and cervical abnormalities. The charity also campaigns for best care and treatment as well as prevention. The National Helpline is on 0808 802 8000
  • Around 3 women in the UK die each day from cervical cancer, with someone diagnosed every 3 hours
  • Over 300,000 women a year are told they may have a cervical abnormality that could require treatment.
  • It is estimated that the UK Cervical Screening Programmes save 5,000 lives every year.

About Quality Health

  • Quality Health has delivered and designed surveys for over 30 years' and has unrivalled experience of measuring staff and patient experience and outcomes in the NHS, private sector and internationally.
  • They carry out quantitative and qualitative programmes of work which are tailored to their clients' needs and budgets. Their work covers all aspects of the survey process, including sampling, interviewing, questionnaire design, questionnaire administration, data input and management of surveys; as well as reporting in a range of formats and to a range of different audiences.
  • Quality Health works in the health sector; voluntary sector and public sector, to ultimately deliver improved services and outcomes for patients, staff and service users.