Worried sick.. Fcal test results

Hi hun I’m 32! Worried sick aswel. Went to the doctor 5 weeks ago as I’d been having symptoms for months, bad lower back that radiates upwards, bloating - look pregnant, poo all over place - small rabbit droppings then Diarrhea. Anyway 5 weeks ago I ended up with blood in my poo… a lot of it. Called the gp they sent off for a fit sample.. it came back 378.. urgent referral made for colonoscopy. Certain bloods had not been done so STILL waiting for my colonoscopy. It’s meant to be a 2 ww referral.. I’m now 5 weeks in with no date for colonoscopy so I’m feeling anxious. What are the next steps for u? Xxx sending lots of love

Hi - I’m sorry to read about what you’ve been through so far. It’s natural to feel scared and nervous. I was in a similar(ish) position to you a few weeks ago. I’m a bit older (51), with a positive FIT bowel screening. The wait between knowing that & getting a colonoscopy; and then the wait between having the colonoscopy & seeing a Colorectal surgeon (waiting for the biopsy & CT scan results) was the worst two periods of time.

It felt like I was suspended in a bubble of ‘unknowns & uncertainty’!

My advice is simple:

1. Don’t read the internet via Google Search etc. The information is not accurate and will not be specific enough for your case.

2. Easier said than done, but try to do everything you can to help manage the anxiety of this uncertainty - talk to family/friends, go for a walk, mindfulness, massage or reflexology, bubble baths, stupid movies…etc

3. Have faith that in time, you will be given more information & you can digest each piece of information & this will create a greater sense of clarity about a diagnosis and a management plan. This will help reduce your stress over time - just knowing exactly what is ahead of you. 

im booked in for bowel surgery next week. I feel more in control now than I did a month ago. Things do get better, once you know exactly what the issue is…

im sending you a lot of strength & supportive vibes your way! 

Hi Beth, thanks for takin your time read my post. That’s a long time to wait I can only imagine the stress and worry you have right now hope your wait isn’t much longer! I’m praying my wait isn’t that long.the next steps is to wait for my camera appointment and hopefully get some answers. Sending lots of love xxx

Hi Sonibee thank you for takin time to read my post and reply!

So sorry to hear your going through this sending you so much love and prayers xx

could I ask what a fit test is, obviously that’s different to the fcal test I had is this something the doctors should of requested for me? Did you have high inflammation levels? I just hope my wait isn’t long for the camera as I’m out of my mind with worry. 

good luck for your surgery next week hope everything goes smoothly for you il be saying a prayer for you xxx

Hi Hmr and Beth1611 and a warm welcome to the board.
Beth, the gold standard treatment is to get an appointment within 2 weeks so might be worth chasing up?

I think the difference between fcal and fit is that the fcal checks for inflammation whereas the fit checks for blood.

Only 1 in 10 colonoscopies results in a bowel cancer diagnosis. There are other issues that can cause similar symptoms like polyps, ibs, colitis, crohns, diverticulitis etc. but the important thing it to get checked out.

As you’ve seen, google can be scary and out of date so stay on here - you can ask anything you like but try not to stress about things that are not facts?

Take care and please keep us posted?

Karen x

Thank you Karen 

yes google just diagnoses you with the worst possible outcome and then you up down a rabbit hole so I’m definitely staying off google now which is why I found this forum thought better to speak to and ask real people with real experiences. I will definitely keep you updated hopefully it’s not a long wait. Gonna give the doctors a call on Monday and see what camera it is that they have done the referral for as I can’t remember if I asked or she told me yesterday on the phone x

2 weeks from the referral? Or 2 weeks from receiving a positive fit test? Thank you so much for replying! I have constant lower back pain at the moment and cramps… non stop 24 bloody 7. I received the positive fit test but then they sent off for referral and it was rejected because the gp hadn’t done my kidney bloods. Then when I did get an appt at hospital they hadn’t received my full bloods so had to send off for those… all delaying everything xxx

i hope u guys are all okay and sonibee surgery all goes well xxxx

Hi Beth1611 It should be 2 weeks from your GP referral. The NICE wording is below

’Refer adults using a suspected cancer pathway referral (for an appointment within 2 weeks) for colorectal cancer if they have a FIT result of at least 10 micrograms of haemoglobin per gram of faeces.‘

FIT is the screening test for bowel cancer. It detects traces of blood in faeces. It’s different from the FCAL or inflammatory markers tests. 

I was sent mine in the post as part of the NHS Bowel screening programme.

They didn’t check my inflammatory markers as they knew that it wasn’t inflammatory bowel disease, as I didn’t have IBD-type symptoms beforehand. 

I asked my GP to chase my colonoscopy for me which helped. 
Once you’re in the system, everything happens quite fast. 

I had my biopsies and bowel tattoo done during the colonoscopy. The biopsy results took around 2 weeks to come in, and based on the findings of my colonoscopy, they arranged a CT scan which was done within the week. 

I was impressed with the progress but the uncertainty was the toughest bit.

Every case is different, and everyone is placed on a pathway.

I can totally appreciate how stressed you must feel. But try not to assume the absolute worst until you have all the results back - it may be more favourable than you might predict. 

Ahh ok I understand, just with my iron levels being low in wondering the fcal test i had checks for blood in the sample aswell? Is it worth calling doctors and asking them if any traces of blood was found or would my test not test for that? That’s good everything happened so fast for you and although there was still some waiting it could have been more waiting time. So glad everything is being sorted for you soni, how are you feeling in yourself? Xx