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positive qFIT of 56 at 25 years old, question about 2WW ref

kat.r96
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hi everyone


I started having burning stomach pain about 3 months ago. Before this, I was in hospital as my right arm and leg went numb and I wasn't responding to the reflex tests. They did a CBC and said it was normal. I had a brain MRI which found a 16mm pineal atypical cyst, which was an incidental finding. I have follow up MRIs to check if its growing or not the next few years, and was asked if I wanted to stay in hospital or leave. I asked to leave as I started to feel a bit better.

 

However, 3 weeks later my numb arm was still there and I developed burning pain in my stomach. It was waking me up in the night and my mum said it might just be a stomach ulcer. I was prescribed omeprazole and it got a bit better after that, but then I started getting a lot worse pain just slightly towards the middle of the original burning pain under my left rib.

 

It's been 3 months of agony. My BMs changed, when I never had any issues with gastro problems before. I was going 8 days without a BM, and then sometimes way too many times out of nowhere. I noticed my stools were dark and mentioned it to the GP (I've been going back and forth since this happened with no luck). They gave me a qFIT and I found out that my result was 56.

 

I am a bit confused as the main pain I've been dealing with is in my stomach area rather than bowels. I've also developed rashes and bleeding around my genitals, which isn't responding to treatment for yeast infections. All these things are happening out of nowhere, and I've had a lump on neck for over 2 months. The stomach pain is truly agony, I've lost over 2 stone in 2 months and 3st since I last got weighed at the Dr's 6 months ago.

 

I don't think I've been referred for an urgent referral, my GP just said they have no idea when I will be seen. I'm seriously worried I could have something cancerous or pre cancerous now. My symptoms are so bad, I'm in agony everyday. I truly don't know how to live with this pain.

 

My mum told me she was referred to a geneticist in 2016 when she had VIN stage 3 from lichen sclerosis. She had 8 brothers and sisters, and only 3 are still alive. A lot died from cancer quite young, but mostly around in their 40s. The rest have all had cancer and are still alive. Her aunts and uncles died from cancer quite young too, one in their 20s. Mostly all bowel or stomach cancer. My cousin had pre cancerous polyps removed at 30. She didn't follow it up, but she's emailed them again recently and they said they would look into having her tested for lynch syndrome.

 

This is all a massive shock. I'm not someone who's ever related to health anxiety, I just hate living in agony. But now with the qFITs and hearing about possible lynch syndrome, I'm seriously worried and my mind is living in torture. Is there anyone that can give me some guidance about the 2WW referral system? Can GPs refer you or do they just submit your results and symptoms? I know that over 80 is an urgent referral, but I'm so young and with my symptoms and family history I would have hoped I would be seen quicker, as I can't see myself waiting months like this. I'm sorry this is so long, I'm just so sad and living in agony.

 

TL;DR: had burning stomach pain for 3 months, ppis only helping a little bit. lost 2st in past 2 months and over 3st since last weighed at Dr's 6 months ago. sudden big change in BMs and dark stools led to qfit. any advice on pushing for an urgent referral or how the system works is so appreciated. family history of possible lynch syndrome, mum is in contact with geneticist as a lot of her siblings died quite young from cancer, my cousin had neoplasia removed at 30. in agony everyday and don't know how to keep living with this pain if I have to wait months

edit: got a 2 week referal for a colonscopy, was meant to be on 5th of nov. i was meant to also get an upper endoscopy at the same time though, so the other gp has refered me for that too so i can have them done on the same day. i'm assuming it might have reset the time of the referal... but i'm glad i'm refered now. i think some days i'm going to be okay and other days i'm truly worried i have cancer or an adenoma at only 25 years old cause of my family history. last month i would never have imagined i would be worrying about this until after i had a suprisingly positive qFIT. mental health is pretty much at rock bottom as family is brushing it off, and living back with a parent since lockdown who gets violent when stressed isn't fun lol!

  • Offline in reply to Westfieldone

    sorry to hear about what you're going through. on the positive is that your qfit is on the low end, but it seems like there could be some inflammation somewhere at least. there are the small percentage of people who will test negative on qfit but still have at least neoplasia. i thought there would be guidelines for people who are suffering from alarm symptoms for months to be referred more seriously. and the fact that you're suffering from pain for this long, could there be another specialist that would do the colonscopy outside your area? charlotte makes some points about diverticulitis, sometimes it can be chronic and it can be diagnosed from a colonoscopy, although of course no one would know until you've been thouroughly investigated.

     

    thank u for ur wee message, i really appreciate everyone replying, it helps get us through and try and stay strong xx hope you get some answers soon and a specialist who takes you seriously, even if it's possibly not something like cancer, you still need answers for what is causing the pain as it could be fixable.

  • Offline in reply to Stacylou33

    aww poor wee soul, this must be so hard on you. i will truly wish that everything turns out okay for you in the end and you find out what's causing it hun xxx thank you so much for your message, really hope you can update us reguarly with any updates xx

     

    i've had the dark stools and mucus too, but mine came out of nowhere 3 months ago. never had IBS symptoms either. maybe your IBS could be something like an IBD, you're right. the doctors on the ward told me this too, there are many reasons why a qFIT can be positive or high. even ones that are high, it's more likely not to be cancer but maybe a pre cancerous polyp or lots of things that aren't sinister. you sound like a strong woman, whatever happens we'll be here to help each other through this. wishing you all the best, tell us how the colonscopy goes definitely xxx you're still very young, but there's probably at least some inflammation going on in your body, hope you're treating yourself well as you deserve it! if there are any polyps, i would ask about them lynch syndrome, i think they can test biopsies or give you a blood test.

     

    also, have you had any calprotectin tests incase of IBD? i guess it won't matter too much as they'll be able to diagnose from a colonoscopy i think x

  • Offline in reply to Charlottechloe

    Its possible.I guess. The gastroenterologist wasnt concerned because calprotecrin for inflammation was low. I suspect the tests have missed something, especially the CT. No test is perfect is it. Im also thinking small bowel, though rare, it happens... Thank and best for you.

  • Offline in reply to kat.r96

    Thanks. Pain is soul destroying. Yes, I may have to pay out for another private consultation. The.first gastroenterologist was diasappointing. He just backed up NHS findings, when I thought he was supposed to be a different approach!. Good luck.

  • Offline in reply to Charlottechloe

    hiya, how did your colonoscopy go?? xx hope you're doing okay!

  • Offline in reply to Stacylou33

    hiya stacy, how are you holding up? xx have you had your colonscopy yet? xx

  • Offline in reply to Stacylou33

    Hi I hope you don’t mind me messaging you after two years but just wondered what the outcome was for you. I’ve just had a qfit result of 129 and am really worried. I’ve been referred on a two week pathway. Hope to hear back from you and that all us ok with you.

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