Guest post: “Bowel cancer is the UK’s second biggest cause of cancer deaths – but it doesn’t have to be. Knowing the symptoms could save your life”

[NicolaDMumsnet]

This Bowel Cancer Awareness Month, Bowel Cancer UK’s Clinical Lead, Claire
Coughlan, wants to make sure we all #KnowTheHigh5 bowel cancer symptoms
to look out for.

Over all the years I've been working with people with bowel cancer, I've heard so often that people didn't realise the symptoms they were experiencing could be serious, or that they waited to go to their GP, even though they knew something wasn't right. In fact, recent research we commissioned at Bowel Cancer UK found that nearly four in ten (38%) of people in the UK couldn’t name a single symptom of bowel cancer; that’s really worrying.

Every 30 minutes someone in the UK dies from bowel cancer. It’s the UK’s second biggest cause of cancer deaths; that’s heart-breaking when we know that bowel cancer is treatable and curable when it’s diagnosed early. So we’re on a mission to increase the number of cases diagnosed at the earliest stages – it really will save lives.

Know the symptoms

This Bowel Cancer Awareness Month, with our #KnowTheHigh5 campaign we're putting the spotlight firmly on the red flag symptoms to look out for - these can include:

• Bleeding from your bottom and/or blood in your poo
  
• A persistent and unexplained change in bowel habit
  
• Unexplained weight loss
  
• Extreme tiredness for no obvious reason
  
• A pain or lump in your tummy
  

Most people with these won’t have bowel cancer, but if you experience one or more of them, you should contact your doctor straight away. I often hear people say they’re embarrassed to go to their doctor, but I would urge people not to feel that way.

Your doctor will want to see you and may ask you to do a Faecal Immunochemical Test (also know as ‘FIT’), at home. It’s a test that looks for hidden blood in your poo. It’s very easy to do and will help your GP to decide whether they need to refer you for further tests.

Although bowel cancer is more common in people aged over 50, it can affect people of all ages. Every year more than 2,600 people under 50 are diagnosed with the disease  in the UK, with the number increasing. Whatever your age, if you’re experiencing symptoms, please contact your GP.

To spread the word, we’re encouraging everyone to take our online symptoms quiz and to share it with family and friends. And five lucky people who take the quiz will win a year’s supply of Andrex® toilet roll.


Information and support

If you want to know more you can visit our website where we you’ll find:

• information about bowel cancer symptoms, screening, diagnosis and treatment
  
•  support for patients and their friends and family, including Facebook groups and our forum
  
• our Ask the Nurse email service where specialist nurses will answer your questions
  

Twitter: @bowelcanceruk
Website: https://www.bowelcanceruk.org.uk/

[Vinvertebrate]

I was diagnosed with bowel cancer at age 31. In my experience, GP’s are very reluctant to refer young people for tests of any description. I am aware this was also Deborah James’ experience - like me she was told she had IBS without any other condition being ruled out. What is BCUK doing to educate GP’s about the increased risk among young people? Is there any research looking at the reasons for this increase?

[Dulcedelecherocks]

I too was diagnosed at 44, and was fobbed off several times for being young / not overweight / non drinker / non smoker. Unless doctors are trained to take people seriously at all ages, potential patients recognising symptoms will not make much difference.

[Vinvertebrate]

Absolutely agree @Dulcedelecherocks - I have met scores of BC patients under 50. All knew the symptoms and all were dismissed to some extent by GP’s on the basis of their age.

[BowelCancerUk]

Hi everyone, thanks for your questions so far. We'll answer in as much detail as we can.
~Niki

[BowelCancerUk]

@Vinvertebrate

I was diagnosed with bowel cancer at age 31. In my experience, GP’s are very reluctant to refer young people for tests of any description. I am aware this was also Deborah James’ experience - like me she was told she had IBS without any other condition being ruled out. What is BCUK doing to educate GP’s about the increased risk among young people? Is there any research looking at the reasons for this increase?

Hi @Vinvertebrate Thank you for your question, and for sharing your experience.
 
While most people who get bowel cancer are over 50, about 6% of cases (2,600 every year) are in younger people. In 2013 we launched our Never Too Young campaign raising awareness of bowel cancer in younger people with the public and the clinical community. In 2020 we published a report highlighting the experience of younger people with bowel cancer. We use this to campaign for the identification of those at high risk of developing the disease (e.g. due to genetic factors), to provide information and support to this group, and to influence policy changes to improve early diagnosis, treatment and care.
 
There is no simple answer as to why cases in younger people might be increasing, it involves a combination of things including genetics and lifestyle. We are funding a number of research projects investigating younger onset bowel cancer including genetic factors, and how the microbiome in the gut may play a role – you can find out more on our website.
 
It is important that GPs feel confident to have conversations about bowel cancer and make appropriate referrals. We have support and education materials such as e-learning modules and factsheets on our website designed to help healthcare professionals know the symptoms to look out for, risk factors, and the best way of ruling bowel cancer out first, and fast. We attend conferences and events to build professional networks and spread the word about the materials we offer, and we place articles in trade magazines. You may have seen that we’ve recently been awarded just over £800,000 from Deborah James’ Bowelbabe fund which we will use to expand our awareness programme, and that will include further e-learning modules, webinars, and face-to-face learning sessions for GPs and pharmacists.
 
I hope that helps, and thank you for raising those issues.
 
I also hope your treatment and care is going well. We are here to support if you need anything. You can visit our website, join our forum or email our Ask the Service: [email protected]
 
~Niki

Links:
Never Too Young campaign and report Never Too Young | Bowel Cancer UK
Our research projects www.bowelcanceruk.org.uk/research/our-research/current-research-projects/
Healthcare professional education resources Health professionals | Services | How we can help | Bowel Cancer UK
Bowelbabe grant funding for our awareness programme Dame Deborah James' legacy funds our vital work to raise awareness of bowel cancer | News | Bowel Cancer UK

[NotSorry]

I was diagnosed at 37 and had the opposite experience of some of the above posters - my GP took me seriously immediately. Within 5 days of my first appointment with him, I had had a colonoscopy and the consultant confirmed it there and then. The only symptom I had was the bleeding - I had no other symptoms. I am also a non-smoker, am almost tee-total, and keep myself fit and healthy. I don't have any questions but everyone should push to get checked for any of the above symptoms. Thank you for bringing this to everyone's awareness

[MissyB1]

I guess one of the issues currently is access to NHS services. So getting that GP appointment in the first place, then getting a fast track to colonoscopy, and eventually getting on the cancer pathway, when waiting lists are so long, and hospital beds in such short supply.

[Lbnc2021]

My dad was going back and forward to his Gp for a year insisting there was something seriously wrong and his GP was insisting it was just piles until he was found collapsed on the bathroom floor with the blood pouring out his backside. He was 46 and had a tumour the size of a grapefruit in his bowel.

[BowelCancerUk]

Thank you for your comments about accessing services, and concerns about waiting times. Our own research shows this is not uncommon with around a third of people saying they would delay seeing their doctor, even if they had red flag symptoms, because of concerns about being able to get an appointment.

While we know the NHS is under pressure, if you are experiencing red flag symptoms then your doctor will want to see you. To prepare for the appointment, you can keep track of your symptoms. We have a symptoms diary on our website. This will help to show evidence of what you are experiencing. If you have possible bowel cancer symptoms, you can ask your GP for a faecal immunochemical test (known as a FIT test). This is a test that can detect very small amounts of blood in poo and it helps a doctor to decide whether someone should be referred for further tests. Waiting times can vary across the country and the NHS are working hard to reduce the time that people wait for urgent tests. Seeing your GP promptly if you have symptoms means you will move through the process as quickly as possible.

If any part of the process is causing you anxiety, there is lots of support on our website, including our patient forum, and health information, leaflets and videos that explain the process. 

~Niki

Links
Symptoms diary: https://www.bowelcanceruk.org.uk/about-bowel-cancer/our-publications/symptoms-diary
Advice for visiting your GP: Visiting your GP | Diagnosis | About bowel cancer | Bowel Cancer UK
Patient support: Support for you | Services | How we can help | Bowel Cancer UK
Patient forum: Online communities | How we can help | Bowel Cancer UK

[BowelCancerUk]

@NotSorry

I was diagnosed at 37 and had the opposite experience of some of the above posters - my GP took me seriously immediately. Within 5 days of my first appointment with him, I had had a colonoscopy and the consultant confirmed it there and then. The only symptom I had was the bleeding - I had no other symptoms. I am also a non-smoker, am almost tee-total, and keep myself fit and healthy. I don't have any questions but everyone should push to get checked for any of the above symptoms. Thank you for bringing this to everyone's awareness

Thanks for sharing your story @NotSorry - we know people's experiences can vary and it's good to hear when someone has a more positive experience.

[Juanne]

I’ve had 2 different cancers, I knew before diagnosis. If you listen your body talks to you. Now, I probably know the symptoms of most cancers.

[Julietand]

Understand and appreciate what you’re doing but can we keep these threads in appropriate places? For those of us with OCD and/or anxiety disorders, threads like this are massively triggering and can send into a downward spiral immediately. Boards like ‘relationships’ or ‘baby names’ seem like safe spaces where we can avoid triggering topics. Didn’t expect to see this and wish I hadn’t. Again, I appreciate that checking up on physical health is important but doing so in this way can massively impact poor mental health too.

[Julietand]

(Would like to emphasise that this is a comment for MNHQ and not for the guest writer who I appreciate is spreading awareness of a good and important cause. My aunt, who I was extremely close to, died of bowel cancer recently. But reading posts like this - or even headings like this - can be really difficult and triggering for a number of MH conditions and I just feel that MNHQ should be mindful of where they’re posted.)

[badgermushrooms]

DH was diagnosed at 41. His GP was actually amazing, did the FIT test and arranged all the relevant referrals straight away. However he was diagnosed pretty late on because he was convinced his symptoms were a side effect of his mental health medication and his psychiatrist, instead of suggesting he see his GP just to be on the safe side, agreed. We lost most of a year to tapering off that medication to see if that helped. He is currently cancer free so may well have got away with it but his treatment was far more dramatic than it needed to be because of this and he is now dealing with some long term side effects. So this is a plea to please target all healthcare professionals not just GPs.

You are doing excellent work in awareness raising though. I was inappropriately thrilled to see a list of symptoms on a toilet roll shelf in the supermarket. I think bowel cancer has been a bit like breast cancer was in the bad old days, people don't like to talk about it so the things to look out for aren't widely known. My own grandmother died of bowel cancer before I was born, my mum knew vaguely that DH was having some issues, but none of us joined the dots because no one wants to talk about their loved ones' poo.

[ZenNudist]

This thread just makes me worry. I have IBS symptoms but have had them on and off my whole life. I have bleeding but I tend to assume piles. I feel tired all the time but put that down to Peri lack of sleep, or the time if year but spring has not made me feel better. Im 44 and have 2 relatives dead from bowel cancer.

It's sodding impossible getting an appointment with my doctor. It's a 50 minute phone call wait at a time I'm supposed to be getting kids into school and myself into work. Then you usually only get a telephone appointment (I last tried to get a yeast infection test and was fobbed off with a phone appointment!).

I know its worth checking but it's so hard to do now.

[Vinvertebrate]

@ZenNudist it’s probably nothing but do persevere. IBS is a diagnosis of exclusion, not an assumption that can be made by a GP without further tests. Wish I’d known that when I was “diagnosed” with it by a GP who also told me I could worry about the blood and mucus and diarrhea if I liked “but I’m not going to do anything about it”.

[NotAdmitting]

I was diagnosed when I was 20. I have no family history of bowel cancer, and I had many of the symptoms for around a year before I was diagnosed, but as I didn’t know they were symptoms, I ignored it.

I started bleeding and it was a lot of blood and even then I would think “oh, that’s odd” and simply flush the loo.

Soon after, I started having these waves of pain, which were so intense I passed out a couple of times. I was taken to the hospital both times. The first time I was told I hadn’t eaten breakfast and that’s why I fainted. The second time, the doctor asked me if I’m confusing my period blood with rectal bleeding.

Despite all of that, I had never actually seen my GP, as I didn’t think it was anything to be worried about. Once I saw my GP, he took it very seriously and referred me to the hospital. The specialist at the hospital diagnosed me with IBS and sent me off with some leaflets on how to manage it, but when I was standing at the desk to book in my follow up, she called me back in and said we should be on the safe side and have a look at my bowels.

I remember seeing the tumour on the screen during the procedure but it was the gasps from the nurses and comments like “but she’s so young” that made me finally realise this is serious. The cancer was quite advanced by this point, so I had several operations, chemotherapy and a temporary stoma.

I am now in my mid 30s and well.

I know bowel cancer doesn’t usually target people as young as me, especially when there is no family history, but if I knew what the symptoms were, I probably wouldn’t have dismissed them for so long. So it really is so very important that people are aware of the symptoms.

[NotAdmitting]

Just to add, I had genetic testing done, and they didn’t find a genetic link. I had just turned 20, and due to the size of the tumour and how far it spread, the doctor thought it would have been growing for 5 years, so possibly since I was 15. I think I was just very very unlucky.

[antidisestablishmentarianism]

I was diagnosed just before Christmas 2022, and am currently in the middle of treatment, which has been radiotherapy, then chemo for 3 months (which is where I currently am, in my last week of chemo). I have scans booked for mid may then the idea is surgery, where they will remove the tumour, my rectum, coccyx, bum hole and give me a permanent stoma. The treatment is intended to be curative.

My GP has been fantastic. He saw me and examined me within 24 hours of me calling, he told me from my exam that he had found what was almost certainly cancer, and put me on the correct pathway. Not only that but once a month or so he calls me for a chat, just to check all is ok. In these times this is exceptional.

I think that the more people know about the symptoms the earlier they will seek treatment and the more likely they will survive. To the poster who objected because of anxiety - that won’t kill you, but undiagnosed and untreated bowel cancer most certainly will. Sorry to be harsh but campaigns like this, and of course the fab bowelbabe’s may well save lives.

[BowelCancerUk]

Thanks everyone for sharing your stories @NotAdmitting , @antidisestablishmentarianism , @badgermushrooms . We know from experience that people do act on things they've read and it helps to hear what others are going through - it really could help someone to hear those real life case studies.

It's frustrating to hear where people are having difficulties seeing a GP or getting a diagnosis you can feel confident in. We have tips about preparing for and following up from a GP visit on our website:
Visiting your GP | Diagnosis | About bowel cancer | Bowel Cancer UK

For anyone with questions about IBS and bowel cancer like @ZenNudist , our Ask the Nurse service may be able to give you some more information and advice: [email protected]

~Niki

[Hatemylife2023]

Grandad dead inside of 6 weeks 2000. you were opened up too late and closed saying nothing could be done. I remember the toilet advertising that went on after x bowel cancer not pretty.

[finnster]

I am waiting for a CAT scan next week ,ive been back and forth so often ,but luckily my GP takes me seriously ,I have a major history of bowel cancer within my family.I have 5 orly endoscopy but still struggled to get referral this time as they seem to think its IBS and go away.My sister was stage 4 when they found her cancer and she had been seen numerous times ,and they again just didn't take it seriously as all the tests were negative for blood. She knew something was wrong but it was too late .Makes me more determined to be seen if something changes and not all symptoms are the same.

[NewStartNow]

I do now... As my partner has just been diagnosed with stage 3 bowel cancer.
I advise anyone with blood in their poo or a change in bowel habit to go their Gp ASAP.
Weight loss wasn't one of my partners symptoms so please don't think you have to have them all. And be persistent: some GPs think irritable bowel disease, piles etc but you know your own body, routine and diet. If it doesn't feel right.. GO!

[PaminaMozart]

Lots of useful information here, but I am puzzled why there doesn't seem to be any reference to the recommendation of routine colonoscopies from age 45 - repeated every 10 years, with once-yearly fecal tests in the intervening years.

[Lolliesareonme]

@PaminaMozart

Lots of useful information here, but I am puzzled why there doesn't seem to be any reference to the recommendation of routine colonoscopies from age 45 - repeated every 10 years, with once-yearly fecal tests in the intervening years.

Are you in the US?

It doesn’t happen in the Uk.

FIT tests available at 60 - expanding to people aged 50 and above [supposedly by 2025).

Colonoscopy you would have to pay.