Been called for a colonoscopy after Bowel Cancer Test kit

[Moonstone1234]

Hi All,

I recently did a postal Bowel Cancer Test and have had a letter saying that I need to have a colonoscopy but before that is booked in I need a telephone consultation to discuss the procedure.

I recognise that they have a process but I would rather jump straight to having the test itself. I called the Screening Helpline and asked them what the wait times are for a colonoscopy but they said they couldnt tell me but it would be discussed during my telephone appt.

So bearing in mind Covid etc I suspect the wait time will be significant. I can travel and have someone who will be with me so am planning to say I can travel within say a 100 mile radius if required.

I then investigated the private option but the cost is over £3k which isnt the end of the world but its a cost I would rather avoid if I can.

Does anyone have any advice or guidance please.

I did my test around the 18th Jan and had a colonoscopy on March 6th, albeit in Scotland.

My telephone consultation was within a week of me sending back the test so hopefully yours won't take too long.

My scope was clear.

Piggy. Thank you so much. My telephone consultation is 25th March which is fine (although I am available anytime before then!). Its the wait for the procedure that I am more concerned about.

And what wonderful news that yours was clear.

I am happy to travel if required. Would that make any difference?

My DH was recently diagnosed with T4 cancer so cancer is all over this house at present.

Hello, I’m sorry to hear this. I would think you are probably on the 2 week pathway now? My DH had this experience and had his colonoscopy within 2 weeks (London NHS, Feb 2021). They were able to tell him straight away there was no cancer. The telephone appointment was to give a few details about the procedure and next steps (after going back over medical history). Hope this is helpful info and very best of luck.

Thank you both for the quick responses. My DH diagnosis was shocking enough. He is on Enzalutamide and is coping well but it robs you of your future. I am 60 and DH is 56.

I will state I am happy to travel for the procedure and that I will take any cancellations although I suspect that the NHS cannot cope with someone who says ‘call me if you get a cancellation and I will be able to come immediately’ type conversation.

I can travel into London....DH will take me in.

The prep for a colonoscopy takes 24 hours so you would be unlikely to get a short notice cancellation. The prep involves taking strong laxatives to ensure that your system is completely cleared out. I wouldn’t have wanted to be in a car for 100 miles before or after any of mine - I sat on a pampers pad in the car and took a change of clothes just in case and only had a 5 mile journey.

Hopefully you will get a date quickly at a hospital which is nearby but don’t make life much harder for yourself if you don’t have to by offering to travel long distances for this.

Oh god Katrina. I see what you mean. I hate using a public toilet to have a poo. Our nearest hospital is 15 miles.

I also need a CV19 test as well so I guess next day appointments are out too.

Hi, the national waiting target for diagnostic tests is 6 weeks, although it's whether this is being achieved by your local Trust. You could be on a 2 week pathway, but I imagine you would have got a day for the Colonoscopy by now. The telephone consultation will probably be just to ensure you understand how/when to take the bowel prep and when to start fasting. A lot of people do not take if correctly which means the procedures are cancelled on the day. I agree with the previous poster about not travelling far on the day of the procedure...I've heard the bowel prep (probably Picolax or similar) is quite extreme.

Best of luck!

Yes. The letter says the telephone call is just to ensure I understand what the procedure is. Tbh - I just want a date for the procedure which is why I thought I would explore the private option.

The colonoscopy preparation actually begins a few days before the procedure with a modified diet. When you make your appointment, you will be given (or posted) the instructions together with the laxative.

If you can afford to have it privately, then why not go for it? In a local private hospital you'll probably have the same colonoscopist as in the NHS appointment. But obviously the private one could be done sooner.

My advice would be to first try to find out how long you'd have to wait for the NHS. If it's acceptable to you, then take the NHS appointment.

If the wait is long, or if there's just no information available, go private if you can afford it. And stay local to where you live so you can switch back to your local NHS hospital if the colonoscopy shows that treatment is needed.

Wishing you lots of luck.

To all of you. Thank you so much for taking the time to respond today. It’s almost the last straw to have to do this especially as my DH has prostate cancer that has spread to the bones.

Having said that he is responding very well to treatment although it’s very early days for us as a family.

What I will do is wait until next Thursday and see what the wait time is for the colonoscopy. I could really do with not spending £3k. The helpline said that I would be given a date during the appointment. I tried to find out what the wait time is now but they wouldn’t tell me.

I definately would not want to e either away from home to take the bowel prep or to travel to have the test done. I would also recommend a pack of cavilon wipes or barrier cream to use after you go to the toilet as it helps prevent you getting sore. When given your appointment it is probably still worth mentioning that you can take any cancellation appointments as people potentially cancel a few days before.

Hi Moonstone
I also had a shock last week when my FIT test came back calling me in. I had the calls from the nurse a couple of days later. She offered me an appointment for the colonoscopy within the two week pathway but I am waiting a couple of days later to go to my local hospital so I’m sure you will hear very soon. Im so sorry to hear about your DH. I’m taking comfort from the positive posts on here

Thank you Smiley. I spoke to the hospital this morning rather than the Bowel Screening Hub and they were much more informative. I offered to take an earlier telephone appointment but she said they are rarely cancelled (I bet they are and some people just dont answer the phone or dont bother to confirm the appointment!) but that they are currently giving people a date within 2 weeks which is good news.

I can also potentially go to two hospitals within the Trust which might help things.

You can probably tell I just want it over and done with. Interestingly I called the private secretary yesterday morning for one of the big teaching hospitals and needless to say have not heard anything back!

I have been privately when I worked for my previous company under my private health cover and had an excellent experience but £3k sounds a huge amount of money for what is effectively a 30 minute day operation.

Privately for other procedures btw - not for this procedure. It does sound a lot of money doesnt it? I am used to private health costs but this sounds expensive doesnt it?

It’s a bit more than 30 mins work for the medical professionals though. When you factor in the sedation, the post procedure recovery, two people in the room when the procedure is carried out and consultant reviewing the images and diagnosing there’s quite a lot of overhead.

Hello Moonstone
I don’t blame you one iota for wanting some clarity ASAP- I had looked at private treatment myself but decided I can’t justify the cost. Had I been made to wait I would definitely have gone ahead. I need to get this sorted-my husband has been very ill but just about to return to work and a couple of close family with cancer. I am thinking of you. Take care and I hope you soon get the all clear! 💐

You'll also need someone to take you home and you aren't allowed to drive for 24hours. DH had a covid test on the Monday and the procedure on the Friday but needed to do the fasting beforehand. They sent out the pack to him straight after arranging the appointment. He got to watch the procedure on the screen while he was sedated.

Hope yours goes well. His was clear.

We all had to isolate after his covid test but that wasn't an issue as I work from home and adult ds is studying from home too. Just had to make sure groceries were stocked up as well as clear liquids and consommé for DH to eat.

Thank you everyone. Will come back next Thursday and let you know the outcome. The Reception Desk were hopeful about the 2 week lead time - as long as its not the following week. I have a desperately needed cut and blow dry booked that week!

My DH is taking me. I am presuming that he wont be allowed into the hospital. It wont be the end of the world if he cannot come in, I can give them his phone number for afterwards.

Our hospital is 35/40 minute drive away and I had to drop DH before 9am with no idea when he'd be taken. They asked for my mobile number and called me when he was taken to recovery and told me to call them back when I was at the hospital. They brought him down and handed him over to me at the door. It went very smoothly. I was working so went home after dropping him off. They called me about 11.45.

Hi op, it’s scary to get the call I know. I’m 42 and have had terrible gastro issues since last November. I had the fit test as part of my tests to see what was going on. If came back positive so had my colonoscopy just before Christmas. The telephone consult usually explains the procedure and prep and after care. I got mine after I got the date through for it though.

Prep is 3/4 days, prep diet and usually a couple of litres of meds to clear you out I got those in the post with 3 leaflets one re prep, one about the procedure itself and one about aftercare. Covid swab was done on the Friday and came back negative on the sat morning and I was in on the Tuesday morning and home by 2pm. It was fine, I had a cannula put in with some mild sedation and they take a contact no for someone to come to pick you up & a clinical support worker saw me to the door where I was picked up. Was all fine, uncomfortable though and I was seen within 4 weeks of referral. I wouldn’t pay as it is quick - I know you’re worried and have a lot on your plate with your husband, I really hope it’s clear and you can concentrate on your husband once it’s done. It can take a while for any biopsies to come back, my mum had one done in Norwich before me and she got printed details of results. Then biopsies later on (6 weeks) Mine are just back last week.
Take care op and hope you get your appointment soon

Thank you for all your experiences. If someone called me now and said can you come in tomorrow but it will cost £3k I would take it. Having said that it wont happen will it. I have to have a Covid test and self isolate, let alone the lovely pre prep.

It doesnt surprise me that people turn up having done no prep and expect the procedure to go ahead. Are people really turned away? I will follow the instructions to the letter and I have of course picked up that peeing clear liquid is a good sign. I wont forget that tip.... Our house is big enough that I can 'reserve' my own bathroom too and I work at home. So does DH so it makes all of this easier.