Almost certain my test results point to bowel cancer

[HopeI'mWrong:P]

Hi. This is the most terrified I have ever felt. I have suffered with IBS symptoms for 14 years. 3.5 years ago, I noticed blood in my stool. My GP (eventually) referred me to hospital where they checked for inflammation (calprotectin test). Normal level is <50, a positive result is >200 (in between is borderline) - mine was 2000! So they arranged a colonoscopy. However, they could only do a sigmoid in the end, so only looked at the very bottom part. That was clear. Then they did a PillCam which looked at my small bowel, which was clear. But they did not look at the rest of my bowel (where cancer would be most likely to grow). They repeated the calprotectin test and it had gone down to 60, so they decided it was unnecessary to so any more tests as my symptoms appeared to be a little better. In 2019, I was experiencing tenderness (still am), so they repeated the test. It had gone up to 110 (borderline), they repeated again and it was 112 (still borderline). I saw a gastroenterologist who felt my stomach and told me he was certain that I did not have bowel cancer (even though he didn't do any more tests).

My IBS symptoms continued but were not too bad - the only thing that was worse was bloating. Fast forward to a few months ago and I have noticed that I can't lie on my left, or else I get this feeling of pressure in the middle of my stomach, and I still have that. 2 weeks ago then I noticed a little bit of blood in my stool. I went back to my GP and the result is back over 2000. I have been referred for a colonoscopy again.

I am utterly devastated. The doctor told me that they aren't worried about cancer, but that they're referring me urgently because of how high the inflammation is (which they did last time it was this high). But I am CONVINCED that it is bowel cancer, and that, because I have had it all this time, it is advanced. I can't eat, sleep or make it through a day without breaking down. I'm 33 years old, so the chances (according to the Cancer Research website) are 6.6 per 100,000 each year, which percentage-wise means 0.0066% of people in my age bracket will be diagnosed each year. (151 women each year out of roughly 2,100,000). But I have drank alcohol every day for 10 years (for the anxiety) and had a low-fibre, high-processed meat diet, and had loads of back x-rays - so that's 4 risk factors. And I have (stupidly) read multiple stories on the 'Never Too Young' page and others, and I share many of the same symptoms, and they too were told my doctors that they were too young to have bowel cancer (for years sometimes), but then they did have it.

I'm really losing it. I'm not sure why I'm actually posting here because as I typed that all out I just convinced myself even more. I have a child and they are going to have to grow up without a mum. The though of dying terrifies me. I'm so scared. Can anyone say something supportive, please? Thank you.

[ankietyjoe]

First of all, a couple of things I need to say -

One of the biggest issues here seems to be your own obsessive research and self diagnosis. We all know one of the worst things you can do is research your own condition on the internet. You are connecting the calprotectin readings with bowel cancer, nobody else is. It's also an indicator of severe IBS/Crohns etc, and also....you guessed it.....excessive alcohol consumption. I recall having this conversation with somebody before, maybe you?

Also, you have had several tests from several Doctors, all giving you the all clear.

Now a couple of things I think you need to hear -

Stop drinking. It doesn't make anxiety easier, it's not an excuse. You should be more worried about that if you have kids than a disease you so far haven't been diagnose with.

Stop eating crap. If your number one fear is bowel cancer, stop eating crap.

Start looking after your mind and body in a constructive way, not feeding it rubbish and masking the anxiety with alcohol. It's not possible to recover that way.

[HopeI'mWrong:P]

Thanks for your reply. I agree about the drinking - it has to stop. But honestly, I don't think that will happen until after I get a diagnosis.

Alcohol use can very slightly raise calprotectin to a borderline level (above 50 but below 200), but it definitely cannot raise it to above 2000, which is what is scary. You're completely correct about the food, but I have eaten a lot better over the last few years, I'm just more concerned about the damage I did as a child/ young adult. I literally stopped eating fruit and veg form the age of about 5, was fed processed foods, and only drank fizzy drinks - and that continued until I was in my mid-late twenties (I've always been really thin though - not sure why). Honestly, I don't know anyone who has eaten less fibre than me. I also don't know anyone (other than both of my parents) who drinks as much as I do, or who has had as many abdominal x-rays. Argh, I'm doing it again. Sorry. I'm really trying to stay positive. Just terrified. I just keep telling myself 'one in 15,000 for someone my age' but that still feels high to me?!

[ankietyjoe]

Thanks for your reply. I agree about the drinking - it has to stop. But honestly, I don't think that will happen until after I get a diagnosis.

Alcohol use can very slightly raise calprotectin to a borderline level (above 50 but below 200), but it definitely cannot raise it to above 2000, which is what is scary. You're completely correct about the food, but I have eaten a lot better over the last few years, I'm just more concerned about the damage I did as a child/ young adult. I literally stopped eating fruit and veg form the age of about 5, was fed processed foods, and only drank fizzy drinks - and that continued until I was in my mid-late twenties (I've always been really thin though - not sure why). Honestly, I don't know anyone who has eaten less fibre than me. I also don't know anyone (other than both of my parents) who drinks as much as I do, or who has had as many abdominal x-rays. Argh, I'm doing it again. Sorry. I'm really trying to stay positive. Just terrified. I just keep telling myself 'one in 15,000 for someone my age' but that still feels high to me?!

Just try and stop telling yourself anything right now. Doesn't matter if you're even trying to convince yourself you don't have it, you're still focusing on 'it'.

Don't put off quitting the booze until after the diagnosis. Once you've had the diagnosis you'll find another excuse to carry one, that's just the nature of the beast.

All you know right now is that you don't have bowel cancer. It's only your own research and imagination that's making it real in your head. Use that mental ferocity and focus it on something you can actually do like improving your diet and stopping drinking, today. If you falter, remind yourself of the child you mentioned. It might sound a bit like emotional blackmail, but I always draw most strength from the fact that I have children and just have to get on with it.

[HopeI'mWrong:P]

Thank you. Honestly, I would love to give the alcohol up right now, but I actually feel like I'm going insane with this worry, so it's not the right time for me (I'm even taking beta-blockers for the first time just to try to cope). But if the colonoscopy came back clear, I am extremely confident that I would quit. I have had anxiety about various health issues in the past, but this is by far the worst one, because with this one I actually have test results which could indicated the worst. I have been depressed for the last few years due due to circumstances, but that all seems so insignificant now. If it came back clear I know I would appreciate my life so much, and I definitely want to prolong it for as long as possible.

[BlueIris]

Orrr, you could find something else to worry over obsessively. Sorry to be a downer, but that's how my HA always worked when it was out of control.

Besides, if you're admitting that you need the booze to get by, you're admitting to an alcohol problem and you need to nip that in the bud.

[NoraB]

I am utterly devastated.

It very much sounds like you don't have bowel cancer..

Do you take Ibuprofen at all?

I'm really losing it. I'm not sure why I'm actually posting here because as I typed that all out I just convinced myself even more. I have a child and they are going to have to grow up without a mum. The though of dying terrifies me. I'm so scared. Can anyone say something supportive, please? Thank you.

I understand, totally. This was the fear which crippled me with HA. But listen, I really don't think you have BC and one reason is that cancer doesn't take time off without treatment - it just keeps growing! It's highly unlikely that you'd have negative or borderline results in-between high ones if this was cancer, and I imagine there would be a lot more going on in your blood work.

I've recently done the calprotectin test and they're looking for inflammation and there are lots of reasons for this, like a bacterial infection/ overgrowth, and some medications can produce high results - which is why I've asked you about Ibuprofen etc

You're HA mind has done what it will always do which is to take you to the very worst case (and least likely) scenario and it's always terminal. I personally know one person who had bowel cancer and she lived (cancer free) for another 40 years after and died when she was 93! Then again, this was my aunty who was the epitome of 'battle axe'. Bowel cancer kill her off? It wouldn't dare!

Take comfort in the fact that gastro specialists - who see people with bowel cancer - are convinced that you don't have it. That's not to say that there isn't a gastric issue, but even if that's the case - it will be sorted.

Do yourself a massive favour and stop trawling the internet because your HA mind will see what it wants you to see and will ignore the rational stuff. I was 100% convinced I had bowel cancer too, so convinced that I planned my own funeral! But there was no cancer. Nothing life-threatening at all - just my IBS being a pain in the @rse..

The fear of leaving my son (autistic) had to be addressed, so I re-framed it all. I know of a child who lost his mum and people stepped up, as they will always do. This child is happy, supported, and enjoying secondary school - excelling in sports. Children are more resilient than we think. Your child isn't going to lose you - not this time - but this fear needs to be addressed because HA will keep coming back. Time spent dwelling on a future that you cannot predict is quality time with your child wasted. You do have this time. Don't allow HA to steal that from you.

I absolutely agree with what Joe's said re alcohol and anxiety. Drinking to relieve anxiety doesn't work. A few drinky poos of an evening might take the edge off for a few hours but it will be back to bite you on the @rse within a few hours when dehydration kicks in and your liver tries to remove the toxins. Some people's 'anxiety' disappears completely when they stop drinking. What does that tell you?

[ankietyjoe]

Thank you. Honestly, I would love to give the alcohol up right now, but I actually feel like I'm going insane with this worry, so it's not the right time for me

Just keep something in mind.

Of course it's your decision whether you decide to give up or not, but if you decide that now is not the time for you I think it's a good idea to frame the continued drinking with the idea that it is a bigger problem than the HA itself, because it probably is. You are borderline alcoholic, and it's a good idea to admit that to yourself. Don't beat yourself up, don't judge yourself, it's just something you felt you had to do to get by that's turned into a problem in itself. I for example, became a hermit when I first experienced chronic anxiety around a decade ago, and because I didn't realise the consequence of that I then had to deal with even more chronic agoraphobia several months later. I even started finding it difficult to leave a particular room in the house. Just illustrating that sometimes you think you're doing a positive thing to help, when in fact it's causing more problems than it can ever solve.

[anom]

Bowel Cancer was my last *drama* 4 years ago at the age of 30

I've always been suspected of having IBS, probably spend about 90% of my life with some sort of constipation - fairly bad diet, alsorts of rumblings/gurgling/popping/bloated aches and pains. (I still have all this)

I went through a particularly bad patch, I injured my back and started pill popping ibuprofen because I was struggling to walk, several weeks of ibuprofen ended up in super mega constipation (I swear I didn't have a movement in well over a week - usually I'm every 3-4 days)

This lead to some quite persistent pain lower left in my abdomen and some blood when it finally happened.

I don't know how things went after that - I think my pain must have remained for several weeks because I ended up at doctors (I do anything to avoid going to see a doctor - including suffering in silence for months) Both times I went they suspected it was probably just IBS, I had some bloods taken and off I went with some new IBS medication. This did fekk all and when I went back to see my doctor he queried if anyone in my family had ever had bowel cancer. Well my granddad died from it in his 60's "I'm going to refer you for a colonoscopy just incase" - this sent me right over the edge. I spent the next month or so spending all my time googling bowel cancer, symptoms, survival rates, various parts of the bowels..where it might be, where it might have spread to. I went right off my trolley. I'd still not even had my appointment for the colonoscopy after a month, I'd lost a good 2-3 stone (I needed to lose a bit of weight but probably not in the way I did) - I flipped..went private and saw a specialist. I must have been in the room with him for about 5 minutes, he asked me a few questions, poked around a bit and said he didn't really see any problems but if I wanted to wait out the colonoscopy for peace of mind I should probably do that.

I went back home, I continued to google like mad, the pain never went away - I was convinced it was a tumour, 24/7 ache and pain in the same spot - it can't be anything else but a tumour, IBS moves around! - I couldn't wait and I rang the specialist back up and decided to have the colonoscopy privately for the pricely sum of £2000 but I could have it in like..4 days time. So I did, them 4 days was probably one of the worst in my life (I'm not even talking about the prep). I had the procedure, I was sedated or knocked out of something - I was laid on a bed with something being stuck up my nose, being asked my weight and then a second later I'm coming round. The specialist is there, gives me a thumbs up that theres nothing there and letting me know theres a bacon sandwich on the cards while the sedative wears off.

I left the hospital about an hour later - pain had completely gone. I did all the googling you have done, got myself worked up into a right state and once I was given the all clear - the symptoms literally vanished in seconds. It's pretty terrifying how powerful the old mind is! once you convince you have something it does all sorts of tricks. (He says as he's currently struggling with a heart problem - or maybe I don't have a heart problem...but either way I'm awaiting an MRI and some blood tests)

[HopeI'mWrong:P]

Hi. First of all, I want to thank everyone who took the time to reply to me. Apologies that I did not respond - the last month has been horrendous and I have hardly functioned. I spoke to a private gastroenterologist who seemed surprised that the previous gastros did look at my whole bowel. I asked if he thinks I have bowel cancer and he said he's thinking more IBD. I said "but you don't know for sure?" and he said "no, I can't say for sure that it's not cancer. The only way to know is by colonoscopy" - this was different to what to gastro I saw last week told me when I asked and he said "you don't have bowel cancer". The wait for a private colonoscopy was 6 weeks, so I was advised to keep my NHS appointment and see what they say. I spoke to the NHS gastro and he agreed that I need a colonoscopy and said the same thing about not being able to say for sure that it's not cancer. He booked me for an urgent colonoscopy, and I received a phone call the next day to say I could be seen within the week! So my colonoscopy is in 2 days. I'm absolutely terrified - why the hell did the previous gastroenterologists decide to stop testing when the two I have spoken to recently don't seem so confident. I'm so upset and angry with both the doctors and myself for not pushing for a colonoscopy years ago. Now, because this has been going on for 3.5 years, I know that if they find cancer, it will be stage 4 and I will most likely die. I'm absolutely terrified. In 2 days time, I will be told that I am going to die. I can't cope with this.