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Why we need to talk more about anal cancer

by Greg Jones | Analysis

5 June 2014

14 comments 14 comments

Here’s a news story you won’t have spotted today – rates of anal cancer have risen by 300 per cent since the mid-70s.

The disease is now five times more common in women – and three times more common in men – than it was 40 years ago. And death rates have quadrupled over the same time period.

As with the majority of these ‘new stats’ stories, we sent out a press release to journalists at all the national news papers and broadcast outlets.

We thought an increase of this magnitude in any disease would warrant an explanation, or at least create some discussion. But the lack of any coverage suggests the national media is too squeamish to report on cancer of the anus. Why?

Cancer taboos

It wasn’t so long ago that ‘cancer’ was a term you were more likely to hear whispered in darkened corners rather than see splashed across newspaper headlines. It’s taken a long time to get cancer into everyday public conversation.

We now openly talk about the disease, and people inspire us with their personal experiences. You need only look at the phenomenon of #nomakeupselfies or the bravery of Stephen Sutton to see how times have changed.

But it would seem some cancer taboos still remain, and it’s no surprise to see these relate to our more intimate regions.

And when you consider the main risk factor for many of these cancers – a virus usually transmitted during sexual activity – you double the embarrassment factor.

Rising rates

anal-quadrupled-2Let’s start by putting things in perspective. Anal cancer may rarely be talked about – but that’s partly because it’s relatively rare, with around 1,200 people diagnosed each year.

And, until quite recently, statistics for the disease were grouped together with bowel cancer figures.

But we’ve now updated our statistics pages to include stand-alone figures for anal cancer, allowing us to see how things have changed over time.

anal-quadrupled-1What these latest figures reveal is a steady rise in the rates of people being diagnosed with this form of cancer.

Overall the rates have risen from 0.4 in every 100,000 during the mid 70s to 1.5 in every 100,000 today.

Interestingly, the rise has been far higher in women – increasing from 0.4 to 1.8 per 100,000 in women compared to 0.4 to 1.2 per 100,000 in men.

For an explanation of what’s behind this disparity, we need to start talking about sex.

Sharing is caring

In recent years we have seen a growing prevalence of infection with the human papillomavirus (HPV), a virus that is usually passed between people during sexual activity.

It’s extremely common, and there are a number of different types. Most people will be infected with it at some point during their lives and their body’s natural defences will fight it off without them ever knowing.

But, if the virus takes hold, it can lead to a chain of events that can result in cancer.

HPV infection has been linked to an increased risk of developing cancers of the cervix, penis, anus, vagina and mouth.

They are all parts of the body we might associate with sex, and mostly parts of the body we tend not to talk about.

Research looking at sexual attitudes and lifestyle suggests that, these days, more heterosexual couples are having anal sex, which might account for the higher rates of the disease in women.

But any sexual activity can increase the risk of passing on an HPV infection to a partner – male or female – so, even if you’ve never had anal sex, it’s no guarantee you won’t have been infected.

And it may even be possible to spread HPV to different parts of your own body once you’ve got the virus.

As with other sexually transmitted infections, using a condom can reduce the risk of passing on HPV but it isn’t guaranteed..

But nobody is suggesting you live a life of celibacy.

It’s the prevalence of the virus, rather than your sexual preferences, that mean you need to be aware of any signs or symptoms of HPV-related cancers.

The most common symptom of anal cancer is bleeding from your bottom. The cause is much more likely to be something less serious but it’s important to report it to your doctor and get it checked out.

Prevention is better than cure

Mother of one Anne Bere

“You can’t be worried talking about it and it shouldn’t be a taboo subject. Over the years I’ve always tried to be honest and open with friends, family and strangers. My cancer was not HPV-related but it was picked up reasonably early and I was able to have successful treatment” – Anne Bere, 52, was diagnosed with anal cancer more than 20 years ago and was treated with chemotherapy and radiotherapy.

So what can be done to tackle this rise in anal cancer rates?

In 2008 the UK introduced its HPV vaccination programme for girls, which immunises them against the two types of virus most closely linked to cancer.

As more women are vaccinated and grow up with this immunity, we should see a dramatic fall in the number of HPV-related cancers.

And a new vaccine is being tested that would protect against some of the other types of the virus as well.

That’s all very well for the ladies, but what about the gentlemen?

The Joint Committee on Vaccination and Immunisation (JCVI) is considering whether to extend the vaccination programme to boys, as rates of HPV-related cancers are also on the increase in men.

Given that women are already receiving the vaccine, heterosexual men will benefit from the ‘herd protection’ that happens when most women are vaccinated, so we need more evidence to show if it would be cost-effective to extend the existing programme to all boys.

The JCVI is kicking off a project to look at just that, so we should have more information soon.

Another option being studied by the JCVI is whether to just offer the vaccine to men who have sex with men.

But one of the best things we can do to help reduce the risk of anal cancer is to talk about it – including getting to know the signs and symptoms and how to go about reducing that risk.

Perhaps the media were too embarrassed to run our stats story; perhaps not. Embarrassment is perfectly understandable, but it’s vital it doesn’t become a barrier for anyone who might have symptoms or is worried about cancer.

If you have any questions about anal cancer, or any other type of cancer, you can call our nurses on 0808 800 4040.

Greg

Greg Jones is a press officer at Cancer Research UK

Image credit: from Flickr

    Comments

  • Does hpv go away
    4 September 2014

    With the help of your blog, I have come to know about to prevent from anal cancer. It is said that prevention is better than cure and in your this blog, you have told the steps how to protect ourselves from anal cancer. Thanks you so much. This is really very much useful post for every visitor.

  • Hannah R
    13 July 2014

    This is me! I was diagnosed with anal cancer in February of this year. In November of last year I noticed bleeding every time I went to the loo and found a lump which I assumed was piles. I tried over the counter treatments which had no effect so in January of this year I went to see my GP. She was brilliant! She didn’t think it was piles but didn’t mention cancer. According to her it looked like a wart like growth. I was referred to a consultant who agreed with the GP and performed surgery to remove the growth. It was only one they analysed the growth that they found it to be cancerous.

    Oddly it was a cancerous tumour inside a wart like growth. Yes there was evidence of the HPV virus but no I’ve never had anal sex. I’ve also never had unprotected sex and you can count the number of sexual partners on one hand so it’s not down to promiscuity. While I haven’t been shouting my illness from the rooftops I’ve not been secretive about it either (the big foam ring cushion on my seat at work rather gives something away) and it is something that needs to be aired so that people are more aware. When you tell someone you have cancer it always gets a shock reaction. Add the word “anal” to that and you can really freak some people out. But why? It’s just another body part.

    I was lucky. Because I went to my GP when I did and because she referred me straight away I was dealt with and the lump was removed. It took two operations to be sure they’d got it all but I’ve not had to have chemo or anything and now I’m into the monitoring phase. If you find anything out of the ordinary you really shouldn’t be squeamish about it. You need to see your GP so that it gets dealt with.

  • Nicola
    5 July 2014

    Informative and honest article

  • Roberta Reilly
    4 July 2014

    I had never heard of anal cancer before reading this article. it was presented honestly and I thank you for it. The more we know about any disease the better for everybody – sufferers and non-sufferers alike. Research is still ongoing for cancer and I appreciate the progress of that research being reported honestly. I would rather read it via a Cancer Research UK article than in a newspaper that may only pick up on the more ‘sensationalist’ issues.

  • Nick Peel
    4 July 2014

    Thanks everyone for your comments.

    Hi Stella,
    We apologise for any upset or confusion we may have caused. Cancer is a complex set of diseases. For some cancers, lifestyle can play an important role, and is one aspect of the disease that we have some control over. But that doesn’t mean lifestyle choices are always the cause of cancer; and there are cases of anal cancer that aren’t linked to any of these risk factors. Exposure to HPV and being a smoker have both been shown to increase the risk of developing anal cancer, but that doesn’t mean they’re responsible in every case. For more information or support, you can speak to one of our Cancer Information Nurses on 0808 800 4040. We have also spoken with our supporter services team who have unsubscribed you from our mailing list, but if you have any further queries please contact them on 0300 123 1022.

    Nick Peel, Cancer Research UK

  • Miss I
    3 July 2014

    Mrs A needs to calm down and look at the bigger picture! Ok so the GENERAL mail did not apply to her, but it would have to an awful lot of people so just disregard it because they weren’t saying that you particularly had done those things hence u got what you got! Absolutely fabulous Mrs A is on the mend now but getting on your high horse and taking money away from other cancer sufferers is rather narrow minded!

  • Jane Frank
    3 July 2014

    Thank you for raising this issue again. I was diagnosed with anal cancer nearly four years ago, and suffered huge embarrassment about the ‘a’ word. I used to refer to it as a rare form of bowel cancer. And then people would be surprised: ‘but you have such a healthy lifestyle! How could you possibly get bowel cancer?’ (as if cancer is our fault!) Unfortunately I did not present early enough and it has now metastasized. My fault entirely – but important to point out that I did not have ‘bleeding from the bottom’, as you so coyly put it. I had altered bowel habit. Luckily when I did go to my GP, too late, she referred me right away, partly because I was over 60. Younger patients I know of, some only in their 30’s, have been fobbed off by their GP with ‘it’s only piles’. GPs do need more training to be able to recognise the symptoms.

  • Karaine
    3 July 2014

    Hereby lies the problem. Mrs Appleby is insulted and CS has lost a good supporter. as she, quite rightly in my opinion, does not want her past suffering to be linked to a suggestion of permissive or alternative lifestyle. What is wrong with keeping anal cancer within the umbrella bowel cancer?. Do we have to know every individual place that cancer can strike? If someone has rectal bleeding, isn’t it enough at the first point to consider bowel cancer? I am not an old fuddy duddy. Look what happened to haemophiliacs people who contacted HIV and AIDS through blood transfusions a long time ago. They always seemed to be explaining that they were not drug users or gay. I am not being political here but the very fact that you – Greg – mentioned ” a virus usually transmitted through sexual activity ” is without doubt going to raise a lot of emotions one way or another.

  • Kath
    3 July 2014

    It has to be worth extending hpv vaccination to boys. If this doesn’t happen gay young men are effectively being discriminated against.

  • Donna Rodgers
    3 July 2014

    These are ridiculous taboo’s, and to be honest, I don’t think the majority of people would be offended reading about them. I’m 48, and yesterday was the first time I saw a picture of a person showing their colostomy bag – I don’t understand what the problem is. Where any illness is concerned, be LOUD and PROUD and get the message out there. Of course the media can’t be relied upon for much, let alone telling the truth, so let us start it by social media. I just tried to share this article on Facebook, but I can’t share it to my own page, only send it to others – we can start there and then make our own personal campaigns to get the word out.

  • Alfred White
    3 July 2014

    Maybe David Cameron and Boris Johnson should be appraised of thi,s with their support for Gay Pride. )
    Of course there are always exceptions like Mrs Appleby (beneath

  • Mrs Stella Appleby
    3 July 2014

    Hi I am a married woman with two children. I am 65 years old. Fortunately in remission with Anal Cancer. But was offended by the email I received from you last month, and would not like to receive any more actually. It was stated quite catagorically that anal cancr was the result of anal sex, severl partners and smoking. I did post a comment to say that i have NEVER smoked, always thought it was a waste of money. Only EVER had sexual intercourse with ONE person, my husband. NEVER had anal sex……Yet still had anal cancer. I felt that your article was MOST offensive. I had all my treatment Privately and the Professor Maughan who was in Felindre Hospital at the time, didnt take any fees personally, they were ALL donated to Cancer Reasearch UK. Total amount nearly £30,000. So you can imagine how upset I was when I read your article. I would like you to take me off your mailing list thank youand will seriously be thinking about making my donations elsewhere.

  • Caroline Gurney
    14 June 2014

    Thank you for writing about this, Greg. I am a ten year anal cancer survivor and from time to time I do media interviews on behalf of Macmillan Cancer Support. I have yet to meet a journalist who had heard of anal cancer before they spoke to me. Some have told me later that they have had to fight to get material past their squeamish editors. When Farrah Fawcett died of anal cancer the British press refused to use the word anal. Many newspaper websites will not allow the use of the word in comments. It would be wonderful if the cancer charities could combine to break through this wall of silence. When I was diagnosed there were 450 cases a year in the UK. You now say there are 1200. That is a very rapid increase but completely understandable as the teenagers of the 1960s and 70s – the first post contraceptive pill generation – reach the age when slow developing HPV related cancers strike. It is crazy that this is not being discussed, especially as the treatment is so gruelling and leaves many, like myself, with significant long-term health issues, even when the cancer itself has been cured.

  • Jill De Nardo
    7 June 2014

    At last someone has noticed!! I was diagnosed with anal cancer four years ago and since that day have been determined to raise awareness of this hideous disease. Despite excellent work by the HPV and Anal Cancer Foundation the nationals are reluctant to pick up on this – why?

    Comments

  • Does hpv go away
    4 September 2014

    With the help of your blog, I have come to know about to prevent from anal cancer. It is said that prevention is better than cure and in your this blog, you have told the steps how to protect ourselves from anal cancer. Thanks you so much. This is really very much useful post for every visitor.

  • Hannah R
    13 July 2014

    This is me! I was diagnosed with anal cancer in February of this year. In November of last year I noticed bleeding every time I went to the loo and found a lump which I assumed was piles. I tried over the counter treatments which had no effect so in January of this year I went to see my GP. She was brilliant! She didn’t think it was piles but didn’t mention cancer. According to her it looked like a wart like growth. I was referred to a consultant who agreed with the GP and performed surgery to remove the growth. It was only one they analysed the growth that they found it to be cancerous.

    Oddly it was a cancerous tumour inside a wart like growth. Yes there was evidence of the HPV virus but no I’ve never had anal sex. I’ve also never had unprotected sex and you can count the number of sexual partners on one hand so it’s not down to promiscuity. While I haven’t been shouting my illness from the rooftops I’ve not been secretive about it either (the big foam ring cushion on my seat at work rather gives something away) and it is something that needs to be aired so that people are more aware. When you tell someone you have cancer it always gets a shock reaction. Add the word “anal” to that and you can really freak some people out. But why? It’s just another body part.

    I was lucky. Because I went to my GP when I did and because she referred me straight away I was dealt with and the lump was removed. It took two operations to be sure they’d got it all but I’ve not had to have chemo or anything and now I’m into the monitoring phase. If you find anything out of the ordinary you really shouldn’t be squeamish about it. You need to see your GP so that it gets dealt with.

  • Nicola
    5 July 2014

    Informative and honest article

  • Roberta Reilly
    4 July 2014

    I had never heard of anal cancer before reading this article. it was presented honestly and I thank you for it. The more we know about any disease the better for everybody – sufferers and non-sufferers alike. Research is still ongoing for cancer and I appreciate the progress of that research being reported honestly. I would rather read it via a Cancer Research UK article than in a newspaper that may only pick up on the more ‘sensationalist’ issues.

  • Nick Peel
    4 July 2014

    Thanks everyone for your comments.

    Hi Stella,
    We apologise for any upset or confusion we may have caused. Cancer is a complex set of diseases. For some cancers, lifestyle can play an important role, and is one aspect of the disease that we have some control over. But that doesn’t mean lifestyle choices are always the cause of cancer; and there are cases of anal cancer that aren’t linked to any of these risk factors. Exposure to HPV and being a smoker have both been shown to increase the risk of developing anal cancer, but that doesn’t mean they’re responsible in every case. For more information or support, you can speak to one of our Cancer Information Nurses on 0808 800 4040. We have also spoken with our supporter services team who have unsubscribed you from our mailing list, but if you have any further queries please contact them on 0300 123 1022.

    Nick Peel, Cancer Research UK

  • Miss I
    3 July 2014

    Mrs A needs to calm down and look at the bigger picture! Ok so the GENERAL mail did not apply to her, but it would have to an awful lot of people so just disregard it because they weren’t saying that you particularly had done those things hence u got what you got! Absolutely fabulous Mrs A is on the mend now but getting on your high horse and taking money away from other cancer sufferers is rather narrow minded!

  • Jane Frank
    3 July 2014

    Thank you for raising this issue again. I was diagnosed with anal cancer nearly four years ago, and suffered huge embarrassment about the ‘a’ word. I used to refer to it as a rare form of bowel cancer. And then people would be surprised: ‘but you have such a healthy lifestyle! How could you possibly get bowel cancer?’ (as if cancer is our fault!) Unfortunately I did not present early enough and it has now metastasized. My fault entirely – but important to point out that I did not have ‘bleeding from the bottom’, as you so coyly put it. I had altered bowel habit. Luckily when I did go to my GP, too late, she referred me right away, partly because I was over 60. Younger patients I know of, some only in their 30’s, have been fobbed off by their GP with ‘it’s only piles’. GPs do need more training to be able to recognise the symptoms.

  • Karaine
    3 July 2014

    Hereby lies the problem. Mrs Appleby is insulted and CS has lost a good supporter. as she, quite rightly in my opinion, does not want her past suffering to be linked to a suggestion of permissive or alternative lifestyle. What is wrong with keeping anal cancer within the umbrella bowel cancer?. Do we have to know every individual place that cancer can strike? If someone has rectal bleeding, isn’t it enough at the first point to consider bowel cancer? I am not an old fuddy duddy. Look what happened to haemophiliacs people who contacted HIV and AIDS through blood transfusions a long time ago. They always seemed to be explaining that they were not drug users or gay. I am not being political here but the very fact that you – Greg – mentioned ” a virus usually transmitted through sexual activity ” is without doubt going to raise a lot of emotions one way or another.

  • Kath
    3 July 2014

    It has to be worth extending hpv vaccination to boys. If this doesn’t happen gay young men are effectively being discriminated against.

  • Donna Rodgers
    3 July 2014

    These are ridiculous taboo’s, and to be honest, I don’t think the majority of people would be offended reading about them. I’m 48, and yesterday was the first time I saw a picture of a person showing their colostomy bag – I don’t understand what the problem is. Where any illness is concerned, be LOUD and PROUD and get the message out there. Of course the media can’t be relied upon for much, let alone telling the truth, so let us start it by social media. I just tried to share this article on Facebook, but I can’t share it to my own page, only send it to others – we can start there and then make our own personal campaigns to get the word out.

  • Alfred White
    3 July 2014

    Maybe David Cameron and Boris Johnson should be appraised of thi,s with their support for Gay Pride. )
    Of course there are always exceptions like Mrs Appleby (beneath

  • Mrs Stella Appleby
    3 July 2014

    Hi I am a married woman with two children. I am 65 years old. Fortunately in remission with Anal Cancer. But was offended by the email I received from you last month, and would not like to receive any more actually. It was stated quite catagorically that anal cancr was the result of anal sex, severl partners and smoking. I did post a comment to say that i have NEVER smoked, always thought it was a waste of money. Only EVER had sexual intercourse with ONE person, my husband. NEVER had anal sex……Yet still had anal cancer. I felt that your article was MOST offensive. I had all my treatment Privately and the Professor Maughan who was in Felindre Hospital at the time, didnt take any fees personally, they were ALL donated to Cancer Reasearch UK. Total amount nearly £30,000. So you can imagine how upset I was when I read your article. I would like you to take me off your mailing list thank youand will seriously be thinking about making my donations elsewhere.

  • Caroline Gurney
    14 June 2014

    Thank you for writing about this, Greg. I am a ten year anal cancer survivor and from time to time I do media interviews on behalf of Macmillan Cancer Support. I have yet to meet a journalist who had heard of anal cancer before they spoke to me. Some have told me later that they have had to fight to get material past their squeamish editors. When Farrah Fawcett died of anal cancer the British press refused to use the word anal. Many newspaper websites will not allow the use of the word in comments. It would be wonderful if the cancer charities could combine to break through this wall of silence. When I was diagnosed there were 450 cases a year in the UK. You now say there are 1200. That is a very rapid increase but completely understandable as the teenagers of the 1960s and 70s – the first post contraceptive pill generation – reach the age when slow developing HPV related cancers strike. It is crazy that this is not being discussed, especially as the treatment is so gruelling and leaves many, like myself, with significant long-term health issues, even when the cancer itself has been cured.

  • Jill De Nardo
    7 June 2014

    At last someone has noticed!! I was diagnosed with anal cancer four years ago and since that day have been determined to raise awareness of this hideous disease. Despite excellent work by the HPV and Anal Cancer Foundation the nationals are reluctant to pick up on this – why?