Bowel Cancer Screening Test positive

I’m glad I made you smile.

Thanks. No it isn’t fun when it’s flaring but I’ve been in remission for over three years so all good for the moment.

I hope you get a date for you procedure soon. Any questions, just ask. Try not to worry.

Hi SillyOldBird,

I presume you've had the faecal blood test which as it says has detected blood in your poo and that the colonoscopy has been arranged , probably automatically, as a result of the test.
Point to note the Colonoscopy is the Gold Standard Diagnostic Test for identifying bowel problems which can be many things other than cancer so its good that you're getting one.
I , too , have had "Issues " in that area so I know whereof I speak.I have lost count of how many colonoscopies I've had as I've been on surveillance for the last 10 years.
Repeating some of the excellent posts here:
The blood will not necessarily be caused by cancer.Not being flippant you might have bad internal piles or diverticulitis as people have suggested.
Re speed if you're very anxious getting a private test might be best for you.
Re the actual tests I agree the pre-test purgative drink is the worst thing about the test.
Take the mild sedative they offer, only for the anxiety. I always do and I usually drop off to sleep and wake up when its all over !
I'm sure the outcome will be fine but even if you were to have , say , a diagnosis of a few small polyps in the colon, early diagnosis is best as we all know. No use telling an anxious person not to worry but we are all rooting for you so let us know how you get on.
Best Wishes
PS After you have your results come back and ask me about some of my colon stories. The tales I can tell......

Labradors, I’m looking forward to hearing the colon stories - not! 😁

Regarding possible causes, I’m leaning towards piles (not literally 🥴) or a given my recent stomach pain and indigestion-like symptoms perhaps another ulcer.

My lovely daughter is warning me off self-diagnosis, which is probably wise.

But at least I’m starting to feel a bit more optimistic, thanks to all the advice on here.

Oh yes, and my mother-in-law has very high BP and they still did hers.
Please don't worry about that. It's not an "operation" as in putting you completely to sleep.

I am a worrier too Sillyoldbird, especially about health matters. Both my father and brother had colorectal cancer and I managed to work myself up into a right state when I had a colonoscopy a year ago due to family history. I also have IBS so questions about any alteration in bowel habits are meaningless. The preparation for the colonoscopy wasnt pleasant, but having been through it once I wouldnt be worried if I had to have another. I chose pain relief. It was very nice, a floaty feeling as if you have had one too many drinks. I felt no pain whatsoever at any point. My results were clear although they did find hemorrhoids which was news to me. The post procedure relief was huge.

I had positive result when living in France in 2010. Had a colonoscopy, then a lot of colon removed. Returned in 2011 had a liver re section (secondary tumours in liver). chemotherapy, Returned again in 2012 ...Given a terminal diagnoses. Then given radio frequency ablation for the tumours at the top of the liver. However awful it sounds, I am still here ! Now spending time travelling and living life each day ....... Bowel Cancer UK and McMillan have sites online which can help ! Dont give up ........ Bon courage as they say in France 1

In 2012 I had positive results too. Before he took things any further the consultant asked if I had been given information on the things I could and couldn’t eat before I took the NHS home test. I hadn’t. He explained that the test looks for digested blood and some years previously there was concern that a great many tests had come back positive from the north of England. It was discovered that black pudding was very popular in the region, and of course, black pudding is made from pigs blood - hence the number of positive results. Make sure you only eat “white food” for 24 hours before the test and any necessary subsequent colonoscopies. White food is things like bread, potatoes, fish, etc. nothing meaty or even things like red jelly. In my case I already suffered from anemia and colonoscopies, endoscopies and eventually a swallowed camera found it was caused by weeping blood vessels in the small intestines. As a result I was first put on iron tablets (which played hell with my insides) so instead I now have an half an hour iron infusion twice a year and feel great! My advice is stay positive until you’re told different. There are many benign reasons why you have had a “positive” result. All the best my friend. I wish you well.

Mum has that, caused months of bleeding, couldn’t do the camera job as said her bowel wasn’t prepped properly, they gave her a ct scan instead! Treated with steroids & antibiotics.

PS - I forgot to say - before the colonoscopy you will be given something like Picolax to clear the bowels. Buy yourself some zinc cream or any nappy rash cream and anoint yourself with it BEFORE it works as well as afterwards. Nobody told me, I had a very sore bum as a result of not using it first. 🤣👍

Oh yes. My husband was told lots of vaseline - I had forgotten about that. And he was advised to use wet toilet wipes after each trip to the toilet.

He came away unscathed!

I had a positive result 20 years ago and it turned out to be polyps but I still remember the stone cold fear I experienced when given the initial result. Try to stay positive, get the test done and very best of luck xxx

Was this a routine bowel cancer screening test? No symptoms?

If so the tests are incredibly sensitive and can detect the tiniest amount of blood, even if it has come from your gum or teeth when you were brushing your teeth. I wouldn't be too concerned at this stage.

Please keep to the programme. You will upset the data and the algorithm if you go private and may find you get lost to follow up, if any is required.

There will be no automatic NHS record of you having had a colonoscopy if you go private. And it is the NHS who have called you for this.

There is a quality standard for the bowel cancer screening programme to arrange colonoscopy within two weeks. There may be a little bit of a delay because endoscopy services are all running behind at the moment but telling you it could be up to a six week wait is unhelpful. You would be within your rights to complain about this remark.

Lots of good positive posts Sillyoldbird - I’m sure everything will turn out alright 🍀

Just went back and read the whole thread. I just want to re-iterate how unwise it would be to have a private colonoscopy.

Your GP is absolutely correct when they say you will fall between two systems.

The bowel cancer screening programme is an automated centralised system. Patients receive a kit when they reach the age threshold.

The nurses who have seen you will have been inputting all of your data (everything they have discussed with you) onto the regional hub electronic notes system. The system is monitored and measured for quality standards.

The nurses are specialist bowel cancer screening nurses who have had extra training and a year long course of study to assist the consultants in gathering the data every step of the way.
The consultants themselves have also had extra training to carry out colonoscopies under the umbrella of the bowel cancer screening programme. Not every consultant is qualified to do so.
It is very thorough with timings of insertion, to certain landmarks and withdrawal times all recorded on the system. All of this data will inform next steps (if any).
It will inform the tests of the future (because of course you will be sent another).

None of this will happen in a private setting and as I've already mentioned there is a high probability you could get lost to follow up. The poster who mentioned blithley that NHS operations take place in private settings all the time.

Well, that's is true but only when a legal contract has been agreed and robust reporting pathways set up. It doesn't happen on a whim.

I wouldn't be at all surprised if whomever you see privately refused to do it because of this (ethically they should refuse). So you would have a waste of a consultation fee.

ethically they should refuse why?

I have had abnormal tests for a few years now, have had all the tests and in November they said I had unknown benign spots in my stomach which they cauterised. So it's not always the worst prognosis. Please try not to worry.

SuperTinny, thanks for taking the trouble to write such a detailed reply, you’re seem very knowledgeable about it all and I appreciate your concerns.

Yes it was a routine screening, not one as a result of symptoms.

The person who told me it may be a six week wait was not someone involved in the screening programme but someone I know who works as a medical receptionist and so sees a lot of results come back.

I’ve decided not to do anything until I’ve spoken with the NHS screening practitioner tomorrow. Then I’ll know for definite how long I have to wait.

The only reason I would opt to go private is it was going to be a lengthy wait and if I still felt thought this was unbearable/unmanageable for me. At the moment, I can’t say that I’m feeling completely unconcerned, but my anxiety level have dropped considerably . This is due to the fantastic support I’ve received from you all on here (and from my family of course.
Hopefully, this feeling will continue and I’ll be able to manage

Sorry I’m posting such a lot, I do feel like I’m making too much fuss but my mood is all over the place. I just wanted to ask if anyone has any tips on how to deal with this part - the waiting?

I tend to shut down when I’m severely anxious. I find it really hard to talk or think about anything but the thing I’m anxious about.

At the moment, although better than I was, I’m finding it nearly impossible to go about everyday life and routine like things housework or cooking. Im also struggling to eat as my throat seems to close up and I feel sick and shaky all the time.

I was considering asking GP for some temporary help to cope, such as Valium or whatever it’s called these days. Good idea or not?

Sillyoldbird
Your body has gone into fight or flight mode, so there for it’s producing adrenaline. Adrenaline is fuel so it’s running round your body with no where to go.
You have to get rid of the adrenaline. Other than punching someone of running down the road do any physical movements that raises the heart rate.

Go somewhere lovely and have a little walk. Breathe deeply. This helps me.
Also swimming. Not fast and furiously but slowly and trying to focus on floating and gently moving through the water. Obviously this is easier in a quiet pool.

It's hard sometimes to calm our minds but if you can relax a bit I think your body will respond and you will stop waking up in a panic.
💐

Thank you Petra and NotSpaghetti. Both sound sensible things to do so will give them a try.

I can’t believe how kind everyone has been on here. It’s getting me through a very difficult time.

Not sure I agree with SuperTinny, I had my bowel cancer diagnosed by private consultation and colonoscopy and was transferred to NHS treatment without any problems.
-Ethically they should refuse- no I don't think so, That appears to be your personal opinion.

I've been trying not to blow my own trumpet harrigran but I am a senior gastroenterologist specialist nurse. I've worked in the speciality for 20 years. I now perform endoscopy and was a bowel cancer screening practitioner before that. I think I know what I'm talking about. It is professional fact not a personal opinion.

And yes it is an ethical decision for the consultant. It is for his own professional safety. As I have previously mentioned they can only work as bowel cancer screeners (which is very different from being able to carry out a colonoscopy) if they have undergone additional training. For instance I can perform a colonoscopy but I am not a bowel cancer screener. I can take biopsies and remove polyps and if they turn out to have cancer in them then it will be me who has spotted it and diagnosed it, but that still doesn't make me a bowel cancer screener. It is an NHS service, and whilst it can take place in any setting it has to be with sign off and approval of the BCS service.

Of course you would have had your bowel cancer diagnosed in a private setting but not as part of the bowel screening service.

If you attend your GP with new symptoms such as fresh rectal blood, unintentional weight loss (if only ) and/or change in bowel habit then you will be provided with a qFit test which is the same test sent by the BCS programme. But it doesn't mean you are now part of that service. If this proves positive for blood you will then be referred via a two week wait referral system for a colonoscopy or scan, but still not as part of the BCS programme.

You only become part of the BCS service if you are automatically sent a kit when you reach the age threshold. You do not have to be symptomatic, merely the correct age.

I keep on saying: it is a completely separate pathway and that is why you should not muddle the two.

Sillyoldbird, you've raised quite a discussion! I hadn't appreciated you had yet to see the bowel cancer screening practitioner. They will put your mind at ease I'm sure. I think you will be pleasantly surprised that the wait will not be as long as you think you know! You are absolutely right not to do anything before you have spoken to them.

If you think Valium will help then there is no harm in having that discussion again with your GP.

BUT a word of warning: If you do get a prescription for Valium (or any other anti-anxiolytic) please contact the BCS nurses to ensure they are aware. You need to ask for advice about taking it on the day (or not) of the procedure. Guidelines vary in different hospitals but in ours we would not be giving the full sedative dose (or even none at all) if anti-anxiolytics are taken the same day due to concerns about overdosing.

My advice would be to take one step at a time, in the order it is advised by the experts. It is not a race. Nothing is going to change by trying to hurry things along, and sometimes it makes things worse.

Remember, so far the only thing you know for certain is that a small amount of blood has been detected in your poo, and you have been invited (and I stress the word invited) for a colonoscopy to investigate further. That is all.

And please try not to listen to those who do not have a full understanding of the bowel cancer screening programme, including friendly receptionists!

I hope this all makes sense and helps to ease your mind a little. I appreciate the wait between appointments can seem long and hard. NotSpaghetti has good advice, a swim or a long walk will do you the world of good.

SuperTinny thanks for that detailed message and explanation. It’s reassuring to hear the wait might not be too long and thanks for the info about taking any medications.

The medical receptionist I know is my sister. Sure she means well, but sometimes …

You’re right though, I do seem to have raised quite a discussion with a range of views but that’s to be expected on here and I appreciate that everyone is just trying to help.

I’ve just been overwhelmed with the kindness shown to a complete stranger and felt guilty that I’ve not replied/acknowledged each one individually. Not sure if that’s the protocol on here or if it’s expected. Anyhow, as far as I’m concerned, people can keep the comments coming- I’ve found it all very helpful.

I tend to shut down when I’m severely anxious. I find it really hard to talk or think about anything but the thing I’m anxious about

At the moment, although better than I was, I’m finding it nearly impossible to go about everyday life and routine like things housework or cooking. Im also struggling to eat as my throat seems to close up and I feel sick and shaky all the time

I was considering asking GP for some temporary help to cope, such as Valium or whatever it’s called these days. Good idea or not
I react to stress in exactly the same way as this. I recently had to wait 10 days for a cardiac MRI scan and I was a complete nervous wreck. I mostly just went to bed. I couldn’t eat, felt sick, my heart felt like it was banging too much. The stress was much worse than the actual procedure of course, as is usually the case.
I enquired about having it done privately to get it over with but was told the same as you. Best to stick with the NHS.
I think you should definitely ask your GP about something like a low dose diazepam or similar and it should be noted on your records that you suffer from anxiety. My (many) health care professionals are all aware of my anxiety issues and take them very seriously - I’ve never been told that I’m being silly or to pull myself together!! For example, when I went for my MRI last week I was given diazepam and told that I would be allocated the bigger scanner to allow for my anxiety.
I honestly can relate to the way you are feeling but please don’t just suffer it out, let the medical professionals help you.
I have had several colonoscopies, always taken the sedation and never had a problem with it hurting, just a bit of pressure now and again. Before you know it you’ll be having a cup of tea and a biscuit then on your way home. Sending my very best wishes 💐