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Health

Bowel Cancer Screening Test positive

(218 Posts)
Sillyoldbird Sun 11-Feb-24 12:57:13

I had a routine test recently which came back positive. I’m quite an anxious person when it comes to health matters so I’m not coping at all well at the moment.

There is a family history of bowel cancer (my brother was diagnosed10 years ago and was successfully treated) and I’m in the higher risk group being 66 years old so this adds to the worry.

I’m feeling generally quite well but have IBS so it’s difficult to say whether I have other symptoms.

I have to have a colonoscopy and there’s usually a two week wait, but have been told they’re running behind so may be up to six weeks, so I’m considering booking in for a private test as I can’t cope with the waiting

I wondered if anyone had any positive experiences they can share with me that would ease my mind?

I’d be very, very grateful.

Callistemon21 Wed 14-Feb-24 20:26:54

Sillyoldbird

I hope you’re right Primrose53. As I’m said a few times, it’s not the procedure, it’s the outcome I fear.
Thanks for the reassurance 😘

My mother used to say "Don't meet trouble halfway". Not easy, but I hope you can try.
🙂

SuperTinny Wed 14-Feb-24 19:46:46

Sillyoldbird

Of course we all worry about things but personally I try not to let worry overwhelm me to the exclusion of all else. Worry tends to come about when you are not in possession of all the facts.

To me extreme worry/anxiety is an unhelpful emotion, driving all sorts of speculative/negative thoughts and behaviours, and to what gain?

Having worked in the NHS for 44 years I've seen and heard about most things: been with patients whilst they have faced a devastating diagnosis, seen patients with catastrophic life changing injuries and spent time with patients who have no-one to care for them in the most basic sense.

It tends to put any worry I have into perspective. And if I do start to worry about something I try to bring it back to basics and remind myself that I have a loving family, I have hot and cold running water, I have a secure roof over my head, I have heating and light and can afford to pay my bills. I have enough food and I have assets that can be sold to raise money for me or mine if needed. I can dress and feed myself, take myself to the loo, I can walk and play and live independently.

If you can change an outcome with worry then go ahead, but if you can't then let it go and focus your energy on something else.

P.S: I'll let you into a secret. I worry a lot about a new (currently very immature) hedge that has been planted by some new homeowners near where I live. Their garden is on a corner of a busy T junction (opposite a primary school) and adjacent to a main road with no pavement. The previous homeowners used the slightly raised flat area as a veggie patch with no boundary hedge. Sight lines in both directions were good for pulling out against oncoming traffic.
Once the new hedge thickens out (and judging by the way they do not maintain the rest of the garden I suspect they may 'forget' to cut the hedge adjacent to the road) the sight lines will be obscured making it very difficult to see oncoming traffic.
So it worries me. Can I change it? Well I could put a polite letter through their letterbox and see what happens. I'm sure other users of that junction (particularly those on the school run) will also find it problematic, so it may get raised by them anyway.
My husband says 'let it go'!! if it becomes a problem we can avoid that junction and take a slightly different route out to the main road'. smile

Sillyoldbird Wed 14-Feb-24 16:48:35

I hope you’re right Primrose53. As I’m said a few times, it’s not the procedure, it’s the outcome I fear.
Thanks for the reassurance 😘

Primrose53 Wed 14-Feb-24 16:27:29

Sillyoldbird. You will be back on here next week saying you don’t know what you were worried about. So many friends have said that to me after I’ve told them it’s not a horrible procedure and the staff are brilliant at reassuring you.

Sillyoldbird Wed 14-Feb-24 14:22:00

Grandyma I will, thanks

Just doing the weekly on-line shopping and based on the advice on here, I have toilet wipes, Vaseline and Kalms on order 😳

Grandyma Wed 14-Feb-24 13:27:09

Please come back and let us know how you get on. So pleased to hear you don’t have long to wait 💐

Sillyoldbird Wed 14-Feb-24 13:11:12

Thanks Katy’s and nanaK54. So relieved and grateful it’s so quick

nanaK54 Wed 14-Feb-24 12:50:31

So pleased for you that you now have a date, good luck with it all flowers

Katyj Wed 14-Feb-24 11:19:53

That’s great news, very quick. Have you thought about taking Kalms tablets through the day. I take these if my anxiety gets the better of me, they take the edge off, that and listening to music or a podcast. Good luck .

Sillyoldbird Wed 14-Feb-24 09:26:41

Have had my appointment with screening nurse just now. I have colonoscopy appointment next Wednesday so not too much of a wait and probably as quick as I could could get privately, especially as there’s the preparation to do - low carb diet etc.

She was very nice but they’re not really allowed to veer off the script and give the kind of reassurance I need (stop worrying, you’ll be fine, I promise ) .

She did stop me worrying about my wine habit though. In my silly mind I have convinced myself that my weekend enjoyment is excessive and I have caused myself to have bowel cancer. She said not and suggested I have a drink to relax myself and go for a long walk.

Good advice I think.

Sillyoldbird Wed 14-Feb-24 05:34:46

Harrigran I admire you. that’s just how I’d like to be . For the sake of people around me as much as anything but I don’t know how to change what I am

harrigran Wed 14-Feb-24 01:05:38

Sillyoldbird, I have had lots of colonoscopies, had bowel cancer and have a stoma. Yes I am pragmatic, it is what it is and I have to live with it, I never said "why me" ?

Sillyoldbird Tue 13-Feb-24 18:57:57

Thanks Labradora, strangely, I’m sleeping quite well at the moment. Partly I think because I’m exhausted with all the worrying and I think that subconsciously I can escape from things while I’m asleep.

I’ve started to feel a bit calmer and hopefully I’ll get some reassurance when I’ve spoken to the screening practitioner tomorrow

Labradora Tue 13-Feb-24 18:26:28

I coped with some recent extreme anxiety with Melatonin to help me sleep (I think you need a prescription for this) but this is not an addictive anti -depressant like Valium for example. I also took during the day a medium strength CBD oil , the type without hallucinogenic properties, and this helped me although might not help you.Again CBD oil is not addictive I don't think.
CBD oil is not "drugs".
Goes without saying your doctors need to know about anything you're taking just in case you have to stop them before your procedure.

Sillyoldbird Tue 13-Feb-24 18:04:00

Coolgran thanks. I’m booked in to speak to the screening practitioner tomorrow by video call so should know more.

Congratulations on your beautifully clean intestines! Really glad all went well for you. Hopefully I will be able to say the same soon. 😊

Coolgran65 Tue 13-Feb-24 17:29:10

With regard to your colonoscopy appointment would it help if you phoned the appointments office at your local hospital and asked how long the wait will be. Find out from the horse's mouth...so to speak. You could also tell them you'd be willing to take a short notice cancellation.
This morning I had a call asking if I'd be available to take a cancellation on Thursday. (Not for colonoscopy).

Regarding the preparation drink it's not a pleasant taste but neither is it dire. It's just that there's so much of it. At my colonoscopy procedure the doctor told me that my intestines were beautifully clean and a pleasure to work withsmile. All was well and I thoroughly enjoyed the tea and toast.
I didn't take any sedation so I could drive home.
I wish you well and look forward to hearing from you following your procedure. All will be ok.
Never worry about posting for reassurance. That's what we're here for.

Sillyoldbird Tue 13-Feb-24 14:57:56

Thank you Grandyma. I’m sorry to hear you’re affected like this too. It’s like a form of torture for us worriers isn’t it?

As I’ve said in earlier posts, it’s the outcome which scares me - I can live with the awfulness of the procedure, although I will opt for the sedation as many have suggested.

I’d be interested to find out if there are others who react pragmatically and take these things in their stride and don’t panic in the way we do? Anyone?

Grandyma Tue 13-Feb-24 14:43:45

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 💐

Sillyoldbird Tue 13-Feb-24 12:02:27

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.

SuperTinny Tue 13-Feb-24 11:32:23

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 grin) 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.

harrigran Tue 13-Feb-24 09:53:38

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.

Sillyoldbird Tue 13-Feb-24 08:25:47

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.

NotSpaghetti Tue 13-Feb-24 07:54:06

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.
💐

petra Tue 13-Feb-24 07:42:44

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.

Sillyoldbird Tue 13-Feb-24 07:06:53

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?