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Urgent colonoscopy and I’m scared

81 replies

ATadScared · 03/09/2022 01:11

I’ve been referred for an urgent colonoscopy and whilst no one has said the words bowel cancer to me I knew it was a possibility. Tonight I’ve just been on my account on the NHS app and seen the words there in black and white “suspected bowel cancer” and I feel alone and scared.

Three friends know about the colonoscopy, all of them going through their own struggles at the moment so I don’t feel like I can talk to them about it as I don’t want to add to their worries. One of them has been quite dismissive anyway so I feel like I definitely can’t bring it up with her, though I wonder whether it’s her way of not letting me worry.

I’m perfectly fine most of the time but it’s just hit me now at nighttime and I’m suddenly scared and feeling very alone. This is the latest in a run of health issues and I just want to hide from it all now but I know I can’t.

I don’t know what I’m doing on here really except maybe to just say hello.

OP posts:
Defeatedbylife · 03/09/2022 01:19

Hope you are ok,sounds scary and its easier to say than do,but please don't worry until you know for sure. Wishing you peace and good health 🙏

AbsentinSpring · 03/09/2022 01:20

Hello

I know it's scary but please bear in mind that
the majority of people referred under the two week pathway do not have cancer.

The wait is hard so I'd recommend you go on YouTube and do some mindfulness meditations (Mark Williams) and listen to Dr Claire Weekes too. They were invaluable when I had my two week pathways (I've had more than one!)

Best if luck.

TanteRose · 03/09/2022 01:22

hi @ATadScared
I just had my third colonoscopy last Wednesday- the prep is the worst part!

try not to worry - I had a polyp removed three years ago that was cancerous but they got it early and last week was just a follow up.

how did it get flagged? Have you been having bowel issues?
anyway giving you a hand-hold Smile and a brew Brew

HP79 · 03/09/2022 01:31

Hello,

Sorry to hear this. Just came here to be supportive. I had cancer (twice) in 2020, so I have some experience of this horrible "not knowing" part and it is a very scary, dark time. I completely remember the feeling of wanting to curl up into a ball until it all just went away. But you will find the strength from somewhere to just get on with whatever needs to happen.

If you've not had a colonoscopy before, it probably won't be as bad as you're expecting. It's the drinking of the bowel prep that's the worst bit! I do believe that not knowing is worse than anything they can tell you, because your imagination can take you to terrible places and probably immediately go to worst-case scenario. But realistically, if it is cancer, it will probably be very treatable... they can do some fantastic things these days.

If you really find that you can't confide your worries to your real-life friends, see if there are any bowel cancer support groups or forums online. I bet there is one and I bet it will be really helpful and supportive.

Chin up. You got this.

ATadScared · 03/09/2022 01:46

Thank you all so much for taking the time to message me and for your kind words. I wish none of you had had to go through what you have, but my goodness how wonderful are you?

I’m not so worried about the procedure itself but I’ve been going through a lot of gynae issues and I’m waiting for a probable hysterectomy, and I’m worried that they might have masked bowel issues so they’ve not been caught quickly enough. Basically, I’m worried about leaving my children.

I’m going to give myself ten minutes to pull myself together then pull up my big girl pants and get on with things. There’s no point in worrying about any of it until I’ve had the colonoscopy and I’ll deal with it then.

Thank you x

OP posts:
Fedupgirl2022 · 03/09/2022 01:54

Hello,

sending so much love and peace to you right now. You are not alone. Please stay off your NHS app until you have some concrete answers, they are testing for things and nothing has been proved yet, although I’m sure seeing it written down was very frightening for you.
look after your body and kind right now by doing kind things for yourself, things that you enjoy that will take your mind off things. I know its so cliche to say but worrying about this really won’t change the outcome!
I will pray for you, and I hope that everything turns out okay.as for your friends, listening to your worries and concerns won’t be a burden for them, you are valid to be feeling the way you are, sometimes people don’t know what to say so choose not to say a lot and this can come across as dismissive.
sending love and best wishes

Fedupgirl2022 · 03/09/2022 01:55

Sorry that was meant to be *mind, not kind

NancyVicious · 03/09/2022 01:57

I have been through the same so I know how worried you are. The colonoscopy was not as bad as I was expecting. Have the sedation to help you stay calm. I spent a month thinking I had cancer because they found some very aggressive looking polyps. They were removed a few weeks later and all was well. Thinking of you

mrsfollowill · 03/09/2022 02:01

You will get through this! DH has to have regular colonoscopies - they are not the most pleasant but try and think it may rule out anything sinister or they may be able to remove a polyp.
Try and do each day as it comes- my poor old mum has breast cancer and we are going along with the mantra to deal with each day one at at time- just don't think too far ahead. Not being flippant btw that is just how she copes with it!.

ATadScared · 03/09/2022 02:14

Thanks for your words of wisdom and kindness. I’m so glad I posted on here, you’ve calmed me down xx

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ATadScared · 03/09/2022 02:14

@mrsfollowill I hope your mum is ok xx

OP posts:
lisers · 03/09/2022 02:25

One day at a time.

When ever you have a scary thought remind yourself to think about today and let tomorrow take care of itself. A cliche, but true.

Cantshakeit · 03/09/2022 02:29

@ATadScared I am in exactly the same position as you right now and have just woken up with thoughts going round and round, convinced it is worse-case scenario. When I'm busy during the day I can think more rationally about it all and, as a previous poster has said, I do think the not knowing is the worst aspect of this.

Receiving the standard letter from the NHS a couple of days ago with the headline 'Urgent Suspected Cancer Referral' made me feel so scared. Even though my Doctor tried to prepare me that I would get this and it was just one of many possible scenarios, seeing it written down is terrifying.

Reading positive posts with good outcomes has helped, and I've managed to resist Dr. Google. I'm also trying the one day at a time mantra. Easier said than done. I hope the outcome is a good one for you.

ATadScared · 03/09/2022 02:35

And for you too @Cantshakeit x

Sending you all best wishes

OP posts:
Mindymomo · 03/09/2022 07:39

My DH went to GP with blood in 💩 GP said I am getting you seen on urgent 2 week pathway and have to put suspected bowel cancer on screen to get this done, as otherwise you will have to wait months, but please don’t be alarmed. Whatever you have, best to get it checked out sooner. In DH case it was an anul fissure-tear and he has confirmed diverticulitis.

ATadScared · 03/09/2022 09:58

Thanks @MindymomoI hope your DH is ok.

OP posts:
ATadScared · 03/09/2022 10:11

It’s daytime and things don’t feel too scary again now. I can hear my younger child giggling upstairs and my older child talking online to friends. I love those sounds ☺️

It’s going to be a busy day with no time for dark thoughts.

Thank you everyone for sharing your kindness and positivity

@Cantshakeit, you and I will get there one day at a time. Take care xx

OP posts:
Workinghardeveryday · 03/09/2022 10:17

Mindymomo · 03/09/2022 07:39

My DH went to GP with blood in 💩 GP said I am getting you seen on urgent 2 week pathway and have to put suspected bowel cancer on screen to get this done, as otherwise you will have to wait months, but please don’t be alarmed. Whatever you have, best to get it checked out sooner. In DH case it was an anul fissure-tear and he has confirmed diverticulitis.

I second that they put the urgent 2 week referral to have you seen quickly and not left months waiting.

I am sure you will be fine, have you got a date for it yet?

Cantshakeit · 03/09/2022 10:23

@ATadScared I completely agree, the daytime is so much easier than the night. I'm holding on to the positive stories on here and trying to be logical.

@Mindymomo That completely makes sense about the referral process so that it makes sure you get seen quickly and even though the Dr tried to make this clear to me that this would be the case, it's still very scary to get a letter through the door with the words you just don't want to see!

I'm expecting a phone call next week to confirm my appointment.

dgirluk · 03/09/2022 10:30

@ATadScared and @Cantshakeit I have just been through this exact scenario. I had a pain, ended up in A&E, weird blood test results, referred to CT, identified a suspicious mass. Put on the urgent referral list for the MDT review. Had a contrast liver MRI and a contrast CT, and a colonoscopy on Tuesday.

The worst bit of the whole process has been the limbo - all of the above has taken about 5 weeks, so don't be surprised if it takes time. If it helps, it looked like this for me:

Saturday night A&E

Monday morning Kidney CT (they suspected a urine infection)

Monday later told by A&E doc that there was a suspicious mass (amongst other things) in my colon, she mentioned the word tumour, held my. hand and told me how sorry she was, and told me I was on the urgent cancer referral list
It took 2 weeks to be reviewed by the MDT which was an awful time - nobody to ask about how quickly it would take, my assumption it would all happen in a day or so, but the MDT meet weekly and I didn't get reviewed on the first week. There's nobody to call either, and I was terrified I had slipped through the gaps and been forgotten. Our hospital has something called the Cancer Navigator (nobody told me about) - but I found that MacMillan have someone stationed t the hospital so I called them, and they dug into my records and told me exactly what was going on. So that's my advice there - find the MacMillan person if there is one, and they're amazing.

2 weeks later got a call booking for an appt with a specialist colo rectal nurse

Had the appt - she referred for Liver MRI (suspicious cysts in my liver), contract CT (to stage the bowel cancer), and a colonoscopy (identify whether it was cancer or not)

The CT happened that week, the MRI the week after, but it was 2-3 weeks wait for the colonoscopy which was torture.

Colonoscopy wasn't as bad as I thought it would be at all; a day of eating white bland food (chicken, white pasta, white bread, cheese etc.), a day of basically staying within reach of the toilet - wear a dress, no knickers, settle down with TV. Top tip - lipsyl applied as a barrier cream before you take the first dose and after every bowel movement - big help ! Colonoscopy itself - sedation hits you like a rocket, didn't even feel the camera go in, fascinating look at your insides. They tell you THERE AND THEN what they see. In my case - nothing whatsoever where this suspicious mass was. Nothing. Something possibly suspicious in a different area so they've taken a biopsy which I get the results for in a couple of weeks.

I felt awful and flat after that. I thought I'd feel this immense relief. But I just felt flat - I think the drugs affected me (they give you Fentanyl and Midazolam). Plus 5-6 weeks of emotional and physical exhaustion and being overwhelmed.

Now I'm having another blood test, waiting for the results of the Liver MRI and the biopsy, and seeing the consultant in about 10 days for all of that. And hopefully getting the all clear.

So it doesn't look like it's cancer. So as someone else said above - just because someone's saying cancer, it really really doesn't mean it is. My initial CT said something along the lines of "indicative of primary colonic tumour" - can't be much clearer than that. But that bit of my colon is completely normal, based on the colonoscopy.

If you're anything like me, the next few weeks are hard. Really hard. My husband hardly slept, I hardly slept. Are you prepping for the worst, or it's going to be nothing? We read a lot on the MacMillan site which is excellent. It's a slow progressing cancer and very treatable. I lived like a zombie. I couldn't eat properly, I couldn't enjoy anything. You might be different !

Focus on each day at a time, don't take on too much. I ended up binge watching absolutely crap on TV because I needed to stop my mind racing and focusing on the negative. But everybody's different. I beat myself up for a bit too - yes I had symptoms for ages (toilet habits were different) but I hadn't even thought about it - too much else going on in life. What if I had made it worse by ignoring it, what if I had left it too late, I'm not old and only been married a few years, I couldn't leave him yet, I wasn't ready.

Fingers crossed for you both, and for myself tbh - hoping to get the all clear in a couple of weeks, although I still have the symptoms.

DM if you want to chat xx

Cantshakeit · 03/09/2022 14:46

@dgirluk wow, what a journey for you. I hope after all that the outcome is good and you can recover from the emotional roller coaster of the past few weeks. Please keep us updated

JustDanceAddict · 03/09/2022 15:26

Hi - I’m also waiting for a colonoscopy which will happen in the next 10 days. I do know how you are feeling except they suspect ibd, but obviously it could be the worst, or they don’t find anything and I still have symptoms.
As @dgirluk says, I am really trying to distract myself but it’s so hard. I’ve barely slept the past few nights and I’m driving dh mad! I think I’ve cried every day for a week.ive told 3 friends - one who has IBD, and my two best mates as I had to tell them why I wasn’t going out. I really have hibernated and it’s not like me.
I told my manager and she was so nice, luckily I am v part time but I am finding it hard to concentrate on anything atm.
good luck to you and others awaiting results. Really hope we are all fine )or at least have a treatable condition).

dgirluk · 03/09/2022 15:55

Thanks @Cantshakeit it's been awful. I can't explain the terror Ii've been living in for the last few weeks. I'm sure it's the same for anyone in this position !

I mean, I'm usually an adrenaline junkie. I have a pilot's license, I used to race cars, I ride motorbikes and horses. But this has been something else.

I cut my circle of people I interacted with right back to immediate friends/family - I just didn't have the capacity for anybody else. I didn't even tell my parents because I couldn't cope with carrying their fear as well. Work were amazing and I've been signed off sick since this all started. Which is good because no way could I have done anything useful.

So.. sorry for the essay - I've not really spoken to anybody like this and it sort of erupted out of me there ! But you're not alone in feeling this fear. And feeling alone. Not sleeping. Fretting. Stressing. Crying. I cried every day for probably 2-3 weeks. Several times a day. I got black shadows under my eyes which haven't faded yet. My husband was in a mess.

You're not alone (goes to anybody feeling like this!) xxxxxx

And honestly Macmillan were great. Their site, their forums, and the person I spoke to who's based at the hospital. All the clinical staff have been amazing, it's just the communications which has been shocking (well that and one dragon secretary who was obstructive).

dgirluk · 03/09/2022 15:56

Oh another colonoscopy tip (my sister has IBD - UC - so had lots of tips). Suck boiled sweets (NOT red or purple) and drink sugary lemonade. Also if you can find clear chicken noodle soup and strain the bits out of it, you can drink that during prep day. Otherwise you get very shaky and ill feeling.

Cantshakeit · 03/09/2022 16:06

@dgirluk Will I need someone to drive me home from the colonoscopy?

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