FIT test came back positive

[Rosienose]

Just read on my NHS app that my fit test came back positive. I’m waiting to speak to a doctor. It says I have been referred for 2 week wait check due to suspected cancer. The results say 78 ug h/b (0.0 - 5.0) anyone know how much this means they found over threshold?

I am a 43 women, have had all my blood tests come back ok. Symptoms have been noticed blood in poo, and some mucus. Sore lower back on either side and coccyx pain. Having a full pelvic mri and uterine mri tomorrow as also had some blood in my urine. Doctor did a full check of me and didn’t find any obvious cause such as piles. Obviously am terrified. I have 2 small children and I am really scared. Will the 2 week wait now be for a colonoscopy?

Thanks

I'm so sorry that you are going through this, especially over Christmas. It must be so scary. But remember, even if it is worth case scenario and you have bowel cancer, it is very treatable. I:be known a couple of people get it in their 40s, have part of their bowel removed and are now still fit and healing their mind seventies. Since then treatments have got better. I know that it's hard not to 'go there' in your mind, but one step at a time. If you're panicking you could ring a support group or contact your Dr.

Healthy, not healing. Down autocorrect!

Thank you so much that helps to hear. I’m hoping the 2 week wait really is a quick wait as it took long enough for the GP to do anything as our GP is so bad at the moment.

FIT results of more than 10 are deemed positive – patient has a 1 in 4 chance of Lower GI cancer. When FIT is less than 10 it suggests a low probability of Lower GI cancer, although these do occur. Patients with bowel cancer and a FIT less than 10 often have other symptoms.

Does this help answer your question? If under 10, then it puts you into the low probability of cancer. I presume that the (0-5) reference in your tests means that you're in a lower category?

Even with the higher category, your changes are 1 in 4. And then many of those cases will still be treatable.

Chances, not changes!

I’m sorry you are going through this OP. Unfortunately mine did turn out to be bowel cancer & advanced but despite that I have received a lot of treatment & I’m ok! As others have said even if it’s positive then cancer is so much more treatable nowadays & there is a lot of support. My only symptom was abdominal pain which is why it took a while to identify.

Also I ended up paying for a private colonoscopy in the end as mine occurred at the height of Covid & the wait on the NHS was longer than 2 weeks. I do want to stress though that even though the FIT test is positive it might not be cancer.

Actually, having read up a bit more, I think that I'm wrong. I think that they are referring to your 78 count being over 10. So I don't know what the (0-5) but is. A very brief Google is says that the scale goes from 0-400.

This might also be reassuring. Following abnormal fits tests and after having a colonoscopy, 91% won't have cancer, 9% will.

Thank you all. I just spoke to the doctor and she confirmed as you said Bernardmanning that normal is 0-5 is normal and I was 78 so quite a bit over I guess. That graphic does help reassure a bit thanks.

Thank you too ilovealido, I’m so sorry yours did turn out to be bowel cancer but glad it’s been treatable, how are you now?

I know it’s best to take each step as it comes and not catastrophise but I still can’t stop myself. My husband has quite bad health anxiety and he seems to think it’s going to be very bad news which is making me worry even more and I am a bit scared I must say. X

That’s kind of you to ask @Rosienose, I remember how nerve wracking it was waiting for the colonoscopy. I was really surprised when my FIT test was positive actually- I just wasn’t expecting it. It might be reassuring for you to know that I was very ill just prior to my colonoscopy, increasing stomach pain & vomiting/ unable to eat which is partly why I went private. It sounds as though you’ve had some symptoms but mostly been feeling ok? I was 41 when diagnosed & have one DD who was 3 then. That’s hard about your DH worrying, that must make it more difficult for you. I don’t want to burden you with how I am but suffice to say I’m still here & have been having treatment on & off. I really thought it was game over when I was diagnosed! Please do let us know how you get on, will be thinking of you & hoping for a positive outcome x

Thank you I really appreciate your words and I really hope you continue to do well and respond to the treatment. Xx

Im having a pelvic and urinary tract ultrasound tomorrow and have also been booked into urology for an appointment in a couple of weeks. Just waiting to see when I get the appointment from the 2 week referral to colorectal that went today. I’m a bit all over the place in thinking about it all. It will be good to have answers.

Good luck with your ultrasound OP, they aren’t usually too invasive. This is the hardest part, the investigations & the waiting. Once you know what you are dealing with & have a plan you will feel better. It’s very hard but I found the best advice was to just take it day by day & try not to get ahead of myself. Easy to say of course! I did find having a young child a helpful distraction as it keeps you in the moment. My DD is also very full on 😂. They should hopefully call you about booking in the colonoscopy fairly soon. Do keep us updated if it’s helpful for you but don’t worry if not!

Thanks again. I have a 7 year old and an 8 year old so hear you on the distraction! I think keeping busy and each day as it comes is what I will try to do & hopefully answers will be soon enough. X

Hi,
what level was your FIT test? I am on my second dose of moviprep (and hence not sleeping) for a pill colonoscopy at 8am tomorrow.
I failed with the colonoscopy 4 weeks ago as it was too painful to continue. So I have had to wait for this test.
my FIT test at the end of October was 400 and the GP has repeated it twice since as she wasn’t happy with the waiting time. I don’t get a number now just that it is still high.

What other symptoms did you all have?
im 44 and my children’s dad - we are separated but live around the corner from each other- was diagnosed with stage 4 bowel cancer last year and given 12months

so at the moment I haven’t mentioned anything to anyone about this as my kids have enough going on.

But I have just come across this thread and thought I’d ask what everyone else experienced.
Good luck to OP

Hi @Biscuitmonster2318 , I’m so sorry to hear it was so painful for you last time. I hope the pill colonoscopy works. I also found the move prep part difficult as it took ages for anything to happen! I think partly because I had a bowel obstruction. I’m so sorry about your ex partner. How is he doing?
I actually don’t remember what my FIT test result was but I know it was high as I remember my Gp sounded a bit worried. Prior to that he’d been fairly relaxed. My only symptoms really were severe abdominal pain that came in waves after eating. It gradually built up until it was pretty much all the time. I knew it was bad because I found it more painful than contractions! I also generally felt very wiped out & was convinced I had Covid as was so tired. But my bowel movements were normal (no constipation or diarrhoea) which threw everyone off. Let us know how you get on. Is your partner on the stage 4 bowel cancer fb group? I am & although I generally lurk I do find it helpful to know I’m not alone.
Hope you’re doing ok OP.

No he isn’t on it. He gets his chemo and bloods checked every two weeks and other than that he has seemed to disengage from it. I understand his reasoning and I respect that but it is also hard.
he refuses to have any more scans at all. He knows he is on Palliative pathway and that the treatment is to give him as long as possible. No hope for remission and never has been due to the mets.
He has said that he doesn’t want to know if it’s worse and will go by how he feels.
I understand the reasons, but he is getting more and more tired, he has commented a few times he is unsteady on his feet and loses balance when walking around.
The youngest son is 15 and about to sit his GCSEs, and I would like more information myself to ensure I can keep him on track. Since Aug 2018 we have lost my daughter-suddenly- from a complication of a brain tumour, he lost his Grandad and uncle who he saw and stayed with every Friday and sat - suddenly from brain aneurysm and blood clot, then our baby grandson who suddenly had a cardiac arrest, his dad’s wife at 47 (stepmom) and three months later was told about his Dad. So I worry about the toll on him. When he found out about his dad, his cynical comment was- I don’t think I can get upset anymore as it’s just normal for everyone to die. You just get used to it. Absolutely broke my heart.

But as I’m not living with the disease I have to deal with what his Dad wants. I get it. If it came back and said Mets were in more places then I can’t imagine how hard that would be- whereas he is in the mindset that it’s just where the original diagnosis stated.

Anyway, I’m here and the pill camera was huge and I feel like I should be in the movie inner space
trying to look at the positives and I don’t have to worry about not getting into my xmas dress, with the moviprep and extra boosters I have been getting while waiting for it to move through the system.

Just had my call with the lead nurse, being referred for a colonoscopy and a full CT scan, she thinks even with Christmas it will be in the next couple of weeks. Relieved that they’re going to be thoroughly checking it all out but also undeniably very worried about it all.

I really hope you are ok after yesterday @Biscuitmonster2318 sounds like with what is happening with your ex partner and now this it’s been a really hard time. X

Hi @Biscuitmonster2318 , I’m so sorry for all the loss you’ve experienced, that’s so hard. And I’m not surprised you want to protect your son, life can be so cruel. It makes me realise how sheltered we’ve been from cancer in my extended family, I’m something of an anomaly! I do get your ex partner’s attitude in a way as the scans can be so stressful & the post scan appointments. I did read about one woman that just stopped engaging with any check ups & went on to live a long time but I suppose that’s probably rare. That pill camera looks a bit scary! Hope it went ok.

Hi @Rosienose, thanks for the update. I’m glad things are moving forwards for you but I totally get how stressful it all is. Not great timing with Christmas either. Will you be able to distract yourself a bit? I sometimes find denial works best for me despite it probably not being the recommended approach!

Exact same! Checked my NHS app 21st December and my FIT test is over 200. Calprotectin also in the 500’s.

I have a telephone consultation on 4th Jan.

how are you doing?

Hi @Ilovealido and @Qwerty93 hope you have both had a good Christmas despite things going on. @Ilovealido christmas has been something of a good distraction, I collected my colonoscopy letter & prep today, so need to start that next week. I had an MRI done on Xmas Eve, I’m guessing I probably won’t find out about that until the colonoscopy next week. I wonder if I will find out about both on the same day or if it will be more waiting. Hope you are ok too.

@Qwerty93 it’s a real shock to read it on the app, and right before Christmas too, never good as it’s quite an emotive time. Hope you are ok. I have found the speed and care since the positive test excellent, it’s good your consultation is all booked in I expect you will get a colonoscopy date following that call. Have you experienced any other symptoms? Best advice I’ve had so far is to try and deal in facts and not thoughts and to keep away from Google, have failed a bit in both counts but trying not to.

Hi @Rosienose, that’s good that Christmas was a bit of a distraction. As you say it’s not an easy time to have this stuff hanging over you. It’s good you’ve had the MRI although tough having it on Christmas Eve. I’ve had a few scans now & I find MRI’s long & noisy! CT scans are less invasive. Good luck with your colonoscopy & prep- is that the first week of Jan you have it?
Hope everyone else on the thread is doing ok.

Hi,

my symptoms are lots of mucus in poo and separately (some times I’ll just sit on the toilet and mucus will pour out).

blood in stool and like in the bowl, but not massive amounts.

some bubbling and cramping in rectum area

@Rosienose how are you