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!

  • Your qfit test isn't that high compared to others I've seen on here, and your symptoms could be down to a multitude of things. It's obviously a worry that you may be genetically predisposed to certain types of cancer but at the same time you have invaluable knowledge that most other people don't have abs can take preventative measures if you do have lunch syndrome such as regular colonoscopy and other checks to prevent or detect cancer. 
    have you been refered for further checks yet? 

  • thank you so much for replying :happy:

    your message has made me feel better about this ordeal definitely. in my head, I think that the chance it's cancer isn't as likely and it's more likely to be something else. I think I'm just shocked that I even tested positive for the qFIT for my age. but it's true that the number could be a lot higher... I hope that it'll be something not as serious.

     

    and yeah, it seems there can be positives to lynch syndrome in regular checks, I think the downside is the cancers are usually more aggressive and grow a lot faster. I worry about the life my aunts and uncles lived going through cancer young and dying from it in the end. but there's a lot of progress made nowadays, so it's probably a lot more manageable.

     

    honestly, I really feel a lot better about it just having someone give another perspective so thank u! I have an update yes, I went to hospital as my stomach pain got a lot worse. I just wanted relief from the agony, but it died down a bit during when I was seen. The doctor I saw was lovely and very understanding. He said GPs aren't really as equipped to deal with complex cases because appointment times are so short. He asked about my family history and looked at my health records and said he'd talk to his boss to see what they could do, as they're a bit powerless with speeding up the referral process themselves. He came back and said they would mention 3 main things in a letter to me GP. First was that considering my weight loss, positive qFIT test and my family history, that him and his boss strongly recommend that I get an urgent referral to a gastrolgist. He also said that they put in the list that I need to be referred to a genecist myself too as soon as possible, as it wasn't normal for so many of my mum's siblings to have cancer young. Then they said that I need a referral for the lump on my neck too, just to make sure. He also mentioned something about possibly also an ENT specialist... I really am so grateful for having such an understanding doctor help me out. So things are hopefully going in the right direction. The gp makes the decision in the end, but I think their recommendations will help my case to be seen quickly. I won't be able to speak to one till next Friday though, I'll update how that goes xx

  • also read some of ur posts, hoping you're feeling okay and good luck with your colonoscopy. let us know how u get on x

  • I have a lot of the similar symptoms that you do including pain in my abdomen for three weeks and a knotting contraction tight feeling in the lower right side, it's a very specific area and that's what made me more concerned than anything. It felt like appendicitis but they couldn't find anything wrong I went to ER over 4 times they must have been sick of seeing me. 
    luckily that pain has now gone but the knotting feeling comes back, usually I get most of my through the night or early morning when I haven't yet eaten so it's very strange. 
    I saw a private specialist who said CC is unlikely and although my father had bowel cancer (my consultant was my dads surgeon and saved his life) due to my fathers age there doesn't suggest a generic link. 
     

    also I think the more you do worry the more it makes these symptoms worse especially to do with the stomach abs bowel area. 
     

    I didn't end up doing a fit test and am going straight for colonoscopy as consultant said no pount doing a fit test if I've seen blood. I'm only 29 so not much older than you and never had to worry about things like bowel cancer before I thought it was something only older people got, 

    will keep you posted about my colonoscopy and results x

  • Cancer treatment these days is amazing my dad is testimony to that. 
    I'm so glad you found a doctor that was understanding who has now you've been refered for all the relevant tests including genetic testing. I guess all you can do now is wait for your appointment and see how it goes, you could also see a private specialist I'm not sure how much mine cost as I haven't been billed yet I think it varies from around £200 plus but it's money we'll spent to speak to someone in the know x

  • 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

  • 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

  • I'm 37 and my fit test has just come back as 400, Iv had a telephone consultation with a consultant and I'm now waiting for a colonoscopy in the next 2 weeks. 
    he said my numbers are extremely high but it could be a number of things including IBD. 
    I haven't had any weighloss, I'm only slim anyway but I originally went due go back and pelvic pain with heavy periods. Iv been having bowel issues but I have ibs and I'm anaemic so any symptoms I was suffering I put down to that. The dr asked have I seen any blood I said no.
    I had an ultrasound and it shown my ovary was enlarged so had to do an ovarian cancer blood test lucky for me the dr requested a FIT test because if she didn't I would have left it. I realized today Iv had so many symptoms dark stools (clearly the blood) mucus, extremely loud noises. but with work, kids and just life I wasn't listening to my body . 
     

    good luck with everything. We have to be positive x

  • awww thank u for ur wee message. so glad to hear that you're dad's life was saved by this specialist you're seeing! hope he's doing well x poor soul honestly, sounds like you've been suffering a lot. it's horrible going through this isn't it, especially our ages are so similar. i've heard of bowel cancer sometimes feeling like appendicitis, but i'm truly hoping that statistics are on your side and that the colonscopy goes well.

     

    one of my uncle's, my mum said his only symptoms before was that he said he felt this tight band feeling around his abdomen. he ended up in hospital for appendicitis originally, but he was told they found a mass in his right abdomen that was bowel cancer. the doctor was actually one of his friend's since high school. my mum said to me though that she didn't like him, as when my uncle went back to him after the surgery and said that he was feeling pain again etc, he fobbed him off as it probably being irritable bowel syndrome despite already having surgery for bowel cancer. 

     

    this was around 1993, he ended up dying a few months later at 46 years old. everyone tells me he was a kind soul who was so talented at music, he even wrote a birthday card for his daughter just before he died that morning and left it by the bed, (it was her birthday a few days after he died). the doctor came round when he died, and said someting like "ah, just like him, he never made much of a fuss or complained". my mum was upset and said well maybe if he did complain more, he might still be alive. 

     

    my mum also talked about this tight band feeling and gets regular checks, but she's never had a bowel polyp in her life. so everyone's different, we just have to try and be positive and take everything as it comes although it can be so hard at times. she had stage 3 VIN from lichen sclerosus and skin cancer though, she doesn't talk too much about her health until after she knows she's clear. the rest of her siblings all have had bowel cancer or skin cancer, except one who died from oesophageal cancer in his late 50s. 

    really hoping your colonscopy goes well, will defo be checking in with you next week to ask u how it went xx exactly, i never thought about these things either before. even until a few weeks ago, i thought it was unlikely. all these relevations have been happening over the past 2 weeks have shaken me, trying to stay strong though. talking to people also going through these similar experiences really helps i think x

     

     

  • thank u hun, i'm not sure what to do yet as the doctors at a&e said that my GP should receive the letter soon and hopefully it will convince them to refer me urgently. i can get an appointment with the one that's not been taking it as seriously earlier on monday, or i can wait till friday to talk to the one who has taken it seriously (she only works part time). think i'll have more luck convincing her, but worried about my mental health of waiting 5 extra days just to get a referral. 

    i was thinking of going to a private specialist! maybe i will hun if things aren't going as i hoped. it's great that you're seeing a doctor you know had helped your dad. the money might be hard for me though cause i think it's the endoscopies that are really expensive, i've not got much spare money and my dad said he'd need to sell his shares. we'll see how it goes on the nhs but if not, it's worth the peace of mind (sadly our nhs is so chronically underfunded, it really needs more money to help everyone who can't afford private treatment).