Symptoms for 5 years but cancer not ruled out?

Hi, I don't know where else to turn so I'm hoping to get some advice about what to do next please. I started getting typical bowel cancer (or IBS/Crohn's) symptoms in 2018 when I was 26, was told I had anxiety or IBS after testing negative for celiac & received no treatment. Over time these symptoms got worse, I went from about 88kg to 64kg, and developed many food intolerances that cause pain and extreme diarrhea, also bleeding from the rectum or anus sometimes. I went back to the Dr a couple of times and he made me have an MRI and load sof blood tests, but found nothing and discharged me. Now I can eat pretty much only meat, potato, non-green veg, egg and rice - if I stick to just these foods, I'm usually symptom free, but my diet is unhealthy and not balanced.


Anyway I'm posting here because about 5 weeks ago I was called back to the hospital where I was originally diagnosed with IBS/worrying too much. They told me the Dr I saw was having all his cases reviewed because he was just diagnosing everyone with IBS and not doing the right tests - the new gastro told me the tests I had didn't rule out anything since they were looking at the wrong part of my bowel. I asked if it ruled out Crohn's or cancer and she said no. She told me I needed to urgently have stool test, blood test and a SehCAT test, and also a colonoscopy but that would take "a long time to come through". I did all the other tests but weeks later I've still heard nothing. I lost all trust in them and I'm so scared now, I'm only 31 and I wanted to start a family all through lockdown,  now I'm terrified I've missed my chance because I'm going to die of bowel cancer, since if I have it then I've had it for at least 5 years now.


Please can someone tell me if there's anything else I can do to get checked for cancer? Or how to get results from a hospital? I just want to know if I'm dying or not so I can plan the next few years. I can't afford to go private since my insurance has my "IBS" as preexisting. Thank you

  • While it's not impossible, bowel cancer at 26 would be unusual. It is far more likely to be IBS, ulcerative colitis, Crohn's, maybe a polyp...

    The fact that they are saying a colonoscopy might take a long time to come through also makes it sound like they are not too worried. From what I've read on this site, I think ye have a two-week wait for cancer tests so if they thought cancer likely, I would hope they'd be arranging the colonoscopy within the next few weeks.

    I think you could ring your GP and ask for the results of the tests. The stool test at least should have given results fairly quickly.

    Other than that, I don't think anything other than a colonoscopy will really rule out cancer.

  • Hi scared31yearold,

    Sorry to read your concerns, how awful.  It seems unbelievable that you didn't have a sigmoidoscopy or colonoscopy given your original symptoms of bleeding.  These tests would have given you piece of mind.  Do go back and see your GP and ask them to re-refer you in an urgent 2 week pathway for a colonoscopy.  
    I would try not to worry too much.  You are very young and this is more likely to be something like ulcerative colitis or Crohns which if left unchecked and medicated can make you feel very unwell.  I'm sure your GP will be sympathetic given the appalling medical incompetence you have encountered.  I would also contact the hospital to make a formal complaint.  It might help 'chivvy' things on a bit.

    Best of luck.


  • Hi Mary, thanks for your reply, I'll try and do that. The problem (I think) is that I moved house & my new GP isn't in the same network as the hospital that ordered the tests, and they can't seem to communicate at all. I've already had to have blood tests repeated as they were sent to the wrong place and/or results were lost. So my current GP knows nothing about my gastro problems & told me they can't help with anything the hospital wants, and likewise the hospital can't see my GP records or speak to them. It's only the NHS trust next door to the one I was originally under, but may as well be on the moon as far as they're concerned haha.


    Re the colonoscopy, afaik I'm still waiting for this (Dr said waiting list is very long) but I haven't had a letter or anything so I have no idea. I tried chasing it up with the hospital gastro's secretary, and she confirmed they had a record of me doing a SehCat (but no results available) but no record of the blood or stool samples I gave. I think I might have fallen through the cracks. I explained all this to a nurse who was taking my blood at my GP (for the second time) and she said I'm better off chasing my current referral than trying to get re-referred since it'd just take longer over all. I would complain but if they have no record of me then how can I back up my complaint? Got to laugh or I'll just cry