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

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!

Parents
  • My qfit was just 3 and the hospial said hey wouldn't do colonoscopy despite many alarm symptoms. They did virtual,CT and stomach scope all ok.  I had calprotectin test below 50. I paid for private gastroenterologist as NHS is 18 Month's in my area. Unfortunately, he juzt backed up NHS. I have daek poo too and private fobt confirmed positive, clesrly blood loss very high up the bowel, maybe small bowel.

    Im stuck with pain but you need to push for answers. Good luck.

    it helps ro reign in the thoughts. 

    all you can do is to peruse the tests and hope they are ok

Reply
  • My qfit was just 3 and the hospial said hey wouldn't do colonoscopy despite many alarm symptoms. They did virtual,CT and stomach scope all ok.  I had calprotectin test below 50. I paid for private gastroenterologist as NHS is 18 Month's in my area. Unfortunately, he juzt backed up NHS. I have daek poo too and private fobt confirmed positive, clesrly blood loss very high up the bowel, maybe small bowel.

    Im stuck with pain but you need to push for answers. Good luck.

    it helps ro reign in the thoughts. 

    all you can do is to peruse the tests and hope they are ok

Children
  • Could you possibly have diverticulitis or a parasite infection do you travel abroad? Of cancer has been ruled out try looking into different options or a different specialist I really feel for you x

  • 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.

  • 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.

  • 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.

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