Shame and social stigma ‘putting cancer patients at risk’
Macmillan warns people with cancer face deteriorating health because they’re too ashamed to seek help with ‘taboo’ side effects
· New poll reveals side effects faced by hundreds of thousands of people with cancer are considered ‘taboo’ by much of the public[i]
· One in five (20%) people with cancer — around 500,000 people in the UK[ii] — found it difficult to seek help with side effects because of embarrassment or shamei
· Sex and relationships are the number one taboo issues in the UK with over half (57%) of people saying they would find them difficult to talk about.
· Cervical cancer patient says side effects were “one of the most difficult things in my life…I felt really embarrassed.”
Thousands of people with cancer may be too ashamed to seek help with life-changing side effects that are considered taboo by the UK public — potentially putting their health and recovery at risk.
Macmillan Cancer Support says hundreds of thousands of people with cancer are facing side effects including anxiety or depression[iii], sex and relationship issues[iv] and bowel and bladder problems[v].
However, a poll for Macmillan by YouGov has revealed that, despite being so common, these, and many other common side effects of cancer, are often seen by the UK public as taboo.
The poll also revealed that among those living with cancer, one in five (20%) — around 500,000 people in the UK[vi] — found it difficult to seek help with problems resulting from the illness because they felt embarrassed or ashamedi.
Around a quarter (26%) of people with cancer say they have been reluctant to talk about issues relating to the disease because of how other people might react.
Macmillan is worried shame and stigma is preventing people getting help for very common and often treatable side effects, putting them at risk of deteriorating physical and mental health.
Ben Hearnden, Lead Macmillan Prostate Cancer Clinic Nurse Specialist at East Kent Hospitals University NHS Foundation Trust, says:
“It’s really sad that despite dealing with a serious illness, people are too embarrassed to ask for help with the associated physical and financial problems as well as their mental wellbeing.
“Patients that I work with can often experience problems with incontinence, erectile dysfunction and relationships. I find these are some of the topics that people feel most embarrassed to broach, but not addressing these issues can have a huge impact on physical and emotional health, and in some instances, even treatment outcomes.
“We all have a responsibility to talk honestly about how cancer affects people. Unless we, as a society, get over our embarrassment, people with cancer will continue to struggle alone with serious issues when help is often just one conversation or phone call away.”
Ben is among health and social care professionals from across the UK who call for the end of cancer side-effect taboos in a new video from Macmillan.
Sex and relationships are the number one taboo issues in the UK with more than half of people saying they found these issues hard to talk about, and 45 per cent saying they would struggle to even talk to their partner, close friends or family about them.i However, one in three people with cancer (37%) say the disease had a negative impact on their ability or desire to have sex, and one in five (19%) say the same for their relationship with their partner[vii].
Hazel Smith, 31, from Dorset, was diagnosed with cervical cancer in 2018. She says:
“Although my cancer has now been successfully treated, I have been left with side effects from my treatment that could be considered taboo. Pelvic radiation causes internal scarring; this damaged tissue can in turn cause your vagina to become narrower and shorter. This means women like me who’ve had this treatment need to use vaginal dilators to prevent it from healing over. My sister was with me at the hospital when I was told about this side effect; we were both in total disbelief.
“I don’t think people have any idea that this can happen following treatment for cervical cancer; It was a shock to me. I find it one of the most difficult aspects in my ongoing life after treatment. Initially I felt embarrassed about it, but I’d rather be honest, so people can understand the impact of cancer.”
The poll shows that other prominent taboos are problems with bowels or bladder (46%), financial issues (46%) and feelings of sadness and depression (39%), all of which can occur as a result of a cancer diagnosis and treatment ii, iii.
Amuz Sandhu, 33, from the West Midlands, was diagnosed with bladder cancer in 2016. He says:
“Following my cancer diagnosis, I really suffered mentally. Even after I was successfully treated, I still suffered with anxiety and depression.
“I was initially reluctant to open up about how I was feeling because I thought that having the all-clear should have made me feel better. I felt ashamed and guilty that I still had this fear and anxiety when I’d been told that, medically, I was fine.
“When I did finally open up and accept help it made a huge difference. Confronting the feelings inside of me helped me to accept them and move forward. Since opening up and seeking help I have developed massively as a person and grown a lot stronger. I feel happier and better in myself than I had thought possible for a long time.”
Dany Bell, Specialist Advisor for Treatment and Recovery at Macmillan Cancer Support, says:
“Receiving a cancer diagnosis can turn your life upside down and affect much more than just your physical health. The side effects can be emotional, physical and financial.
“We want people with cancer to know that whatever they’re going through, they’re not alone. Many of the ‘taboo’ impacts of a cancer diagnosis are treatable and thanks to the generosity of the UK public, Macmillan is here to help.
“The findings of this poll also show why it’s so important that all the support needs of people with cancer are recognised and addressed, at diagnosis, throughout treatment and beyond. It’s vital that these ‘taboo’ side effects don’t slip through the net.”
To get help from Macmillan visit macmillan.org.uk or call the support line on 0800 808 0000.
-Ends-
For further information, please contact:
Lyndsey White, Media Officer, Macmillan Cancer Support
020 7840 4870 (out of hours 07801 307068)
Notes to Editors:
About Macmillan Cancer Support
We’re here to help everyone with cancer live life as fully as they can, providing physical, financial and emotional support. So whatever cancer throws your way, we’re right there with you.
For information, support or just someone to talk to, call 0808 808 00 00 or visit macmillan.org.uk
Professionals in the video (in order of appearance)
- Benjamin Hearnden, Macmillan Lead Prostate Cancer Nurse Specialist, East Kent Hospitals University NHS Foundation Trust
- Kim Peate, Macmillan Skin Cancer Clinical Nurse Specialist, East Kent Hospitals University NHS Foundation Trust
- Claire Taylor, Macmillan Nurse Consultant in Colorectal Cancer, London North West University Healthcare NHS Trust
- Martin Dunne, Cancer Information & Support Adviser, Macmillan Support Line
[i] Macmillan Cancer Support/YouGov survey of 2,162 adults in the UK, including 136 people with a previous cancer diagnosis. Fieldwork was undertaken between 26th — 29th April 2019. The survey was carried out online. The figures have been weighted and are representative of all UK adults (aged 18+).
[ii] As per reference i. As there are around 2.5 million people living with cancer in the UK (Maddams J, Utley M, Møller H. Projections of cancer prevalence in the United Kingdom, 2010–2040. Br J Cancer 2012; 107: 1195–1202. (Projections scenario 1). Macmillan analysis based on extrapolation of 2010 and 2020 projections that the number of people living with cancer will hit an estimated 2.5 million in 2015), 20% equates to an estimated 500,000 people in the UK.
[iii] Macmillan Cancer Support/YouGov survey of 2,067 people with a previous cancer diagnosis. Fieldwork was undertaken between 23rd June-6th July 2017. The survey was carried out online. The figures have been weighted and are representative of the living with cancer population. 23% of respondents have experienced anxiety or depression as a result of their cancer or its treatment. As there are around 2.5 million people living with cancer in the UK (Maddams J, Utley M, Møller H. Projections of cancer prevalence in the United Kingdom, 2010–2040. Br J Cancer 2012; 107: 1195–1202. (Projections scenario 1). Macmillan analysis based on extrapolation of 2010 and 2020 projections that the number of people living with cancer will hit an estimated 2.5 million in 2015) this equates to an estimated 575,000 people in the UK.
[iv] Macmillan Cancer Support/YouGov survey of 2,040 people with a previous cancer diagnosis. Fieldwork was undertaken between 21st December 2018–7th January 2019. The survey was carried out online. The figures have been weighted and are representative of the living with cancer population. One in five (19%) say the disease has had a negative impact on their relationship with their partner. As per reference ii this equates to an estimated 475,000 people in the UK.
[v] As per reference ii. 21% of respondents have experienced bowel or urinary urgency, or incontinence, as a result of their cancer or its treatment, equating to an estimated 525,000 people in the UK.
[vi] As per reference i. As there are around 2.5 million people living with cancer in the UK (Maddams J, Utley M, Møller H. Projections of cancer prevalence in the United Kingdom, 2010–2040. Br J Cancer 2012; 107: 1195–1202. (Projections scenario 1). Macmillan analysis based on extrapolation of 2010 and 2020 projections that the number of people living with cancer will hit an estimated 2.5 million in 2015), 20% equates to an estimated 500,000 people in the UK.
[vii] As per reference iii.
