Cancer Research UK main site

Neuroendocrine cancer

Kymblee
Offline

i tested positive for neuroendocrine cancer on a urine test back in March after having reoccurring symptoms such as flushing. Since then I’ve been having tests to locate the suspected tumours but 3 months in it’s not conclusive. I’ve had biopsies taking from an endoscopy but the gastro doctor thinks they are benign but took them incase. That was over 3 weeks ago and I’m still waiting on results. I had a chest and pelvis ct and that showed nothing really. I then had a nuclear medicine scan through nhs and all I got told was to have another CT just on my chest I called and asked why and was told just to check. I asked for the report and it shows a small uptake in left chest but nothing significant and they just want to check the anatomy of my chest apparently… whilst awaiting that scan I’ve also noticed that I’ve got an enlarged right tonsil and I’ve tried to get clarification from NHS dr whether the scan covered my neck and whether I need to get this checked and can’t get an answer the nhs drs secretary told me that they only deal with upper GI and so I would have to go back to GP and get referral to an ENT doctor to get it looked at. I’m now using private cover to get an ENT appointment faster as I’m anxious. I’ve also redone the urine test to be sure that I didn’t get a false positive although I’ve heard it’s rare to get one. I’ve beeen waiting 3 weeks for those results. I’m going mad with worry. I just want to know if I have it or not. I wanted to know if anyone else has had an experience of neuroendocrine cancer and if it was difficult to locate where the tumours were? 

  • Offline

    My uncle had this on his pancreas. What i remember is, but don't take it word for word, depending on the symptoms, they can sometimes pinpoint it. By that i mean, lower GI NETs can cause flushing and loo issues, lung nets can cause wheezing, pancratic ones can cause loo issues and stomach pain and so on. How are you with tomatoes etc? I know a lot of people with NETs struggle with those. Those are indicative of lower GI NETs too. Lower GI ones sometimes take a period of time before they show up.

    An Octreotide Scan is usually used if nothing is being picked up on CT's etc. That uses tracers that attach to the hormones. I'm assuming the urine test was the 24 hour one?

  • Offline in reply to ProfBaw

    So I’ve not really had any symptoms other than the flushing which has now strangely stopped. I have had wheezing for about 2 years but put it down to asthma. I’ve not really had any toilet issues other than some blood but had a colonoscopy and nothing was seen. They’ve done an octreotide scan but I’m quite unclear if they did or didn’t see anything. All I got was asked to book a chest CT scan following it. Then the dr cancelled it so they could discuss me at a team meeting and the outcome of that was to have the CT scan after all and now I’m waiting to have that next week. And waiting to see what the 2nd 24 hour urine test says. 1st one said level was 225 and 40 and under is meant to be normal. I would think the urine test was a mistake other than I generally feel unwell and now also have this visible lump in my neck. It’s all a little confusing and worrying. I emailed the NHS drs secretary to ask if I can have a face to face consultation to ask questions but I never get a straight answer. Thank you so much for replying :) 

Speak to a nurse

Quick links

Follow us

Registered with Fundraising Regulator (logo)
Cancer Research UK is a registered charity in England and Wales (1089464), Scotland (SC041666), the Isle of Man (1103) and Jersey (247). A company limited by guarantee. Registered company in England and Wales (4325234) and the Isle of Man (5713F). Registered address: 2 Redman Place, London, E20 1JQ.