Launched today: New report on the long term consequences of cervical cancer

Cervical cancer post treatment and side effects
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Hello everyone

I don't often post but I just wanted to share with all of you that today we’re launching our latest report: The long term consequences of cervical cancer and its treatment

 

It is the largest known dataset of women affected by cervical cancer and has uncovered far higher than anticipated numbers of women are affected by multiple, long term consequences of their treatment and many women are coping with these problems in silence.

 

  • 88% have experienced at least one, 63% at least three and 24% at least six physical long term consequences of their cervical cancer treatment
  • Worryingly high numbers said 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 difficulties including 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.
  • Mental health issues are significantly more prominent among young women, however across all ages the emotional and psychological impact of cervical cancer is being neglected

 

We are urging for greater recognition of the far reaching and long lasting problems a cervical cancer diagnosis and treatment can bring. In particular through the introduction of a national tariff for the long term consequences of cancer to ensure they are recognised as part of the post treatment care pathway and for the national metric of quality of life, currently being piloted for more common cancers, to be swiftly rolled out to less common cancers to ensure the needs of those living with and beyond cancer are not neglected.

 

Any help you can give with sending it to your contacts who may be interested would be fantastic, especially those who work in primary or secondary care. Also if you have Twitter and fancy sharing, here’s a tweet you could post:

 

New @JoTrust report reveals long term consequences of cervical cancer diagnosis and treatment https://www.jostrust.org.uk/longtermconsequences


Thank you as always for any support you can give the charity in getting this important infomation out there.

Best wishes

Rebecca

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I am not at all surprised at these numbers.

I had a radical hysterectomy and radiotherapy 28 years ago and now have life changing side effects: bowel, bladder and vaginal problems.

I have asked for support from my GP who has referred me to a urologist, gastroenterologist and psych/sexual health professional - once I have made very specific requests. Nothing has proved very successful. I often feel desperate, isolated and very down. I am in pain and discomfort every day of my life. I don't feel as if anybody has an overview of my health, either physical or mental - I can't even get to see the same GP when I need to go to my doctors. I have run out of energy for what feels like a constant battle.

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Hi Suzie

I'm so sorry to hear that your ongoing side effects have had such a huge and difficult impact on your life. 28 years is a long time to be experiencing these sorts of problems and it is often frustrating for women to not be able to get a good sense of what the overall plan for their health is. Part of what we are calling for is this more joined up approach to patient care.

As an aside, have you been in contact with the Pelvic Radiation Disease Association? They are a fantastic source of information and it's a great way to connect with other people in a similar situation. You can get in touch with them at http://www.prda.org.uk/

Would you be interested in becoming a case study for us? Over the coming months we'll need to demonstrate the long term consequences of cervical cancer in a variety of ways, one of which is through real people's experiences. If you would consider this, please do drop me an email at rebecca@jostrust.org.uk

Thanks for sharing what you are going through Suzie, perhaps speaking to someone on our helpline might be useful to you.

Sending my very best wishes

Rebecca