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Freshly diagnosed

GraniteWave
  • 14 replies
  • 19 subscribers
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Hi all, 

The urge to apologise for all the waffle I am about to spew is strong but I have read a few threads already and know everyone is very understanding and supportive. 

I have had tummy problems for a very, very long time and was always blown off with it's just IBS but I knew something was wrong with me. Isn't it great to find out you've been right all along?

Earlier this year my symptoms sharply worsened: diarrhoea, stomach pain, bloating and blood in my poo, very nasty stuff and I went back and forth with the GP 8 plus times, saw a colorectal specialist twice, was told it was just IBS and a fissure, before complaining to PALS to finally get my colonoscopy. 

I have a 6cm growth in the top of my colon right by my appendix. I found out last week it is a neuroendocrine tumour. It's grade 1, so at its size, it has probably been growing for years!

 I have a PET scan booked for the 11th to see if it is anywhere else.

I don't know what to say or how to feel... I know I have cancer but I don't feel like I have cancer... Does that make sense? I know I'm unwell and have been for such a long time and this finally explains it but also, I feel like I'm not sick enough to claim the cancer title? 

I have told my family anyway; some are devastated, but my dad, who's beat cancer twice already, was taking it with good humour which was honeslty the best response so far. 

I don't really have any friends I can tell and lean on... 

My husband who came with me when I found out is in bits over this so I can't really tell him how bad I am feeling emotionally, I feel like I'm the one reassuring him everything will work out fine. 

Another problem I am having is I already have quite complex mental health illnesses and I am trying so hard to not just crumble. 

I'm just so tired, physically, mentally, every which way possible. 

  • Hi dont ever feel youre alone. We all support eachother on here. I had similar symptoms 4 years ago, but was lucky mine was IBD and IBS. In early April this year, i was diagnosed with having a neuroendrocrine tumour in my right lung, stage 1. I was absolutely terrified (still am) . Ive so far had ct scan, pet scan, lung function test , endoscopy, and a dota scan. Thought next step was surgery, but then decided cos its a rare cancer wanted an ultrasound on my thyroid and an mri on my liver. Ive had the utrasound but still waiting for the mri appointment to come through. The surgeon told me after all the results will have pre op then surgery. Its like being on a roller coaster, one day feel fine, next day in pieces. 

    Hold onto the fact its early stage and treatable. Always come on here if need support. We are all in the same boat. Xx

  • I am also newly diagnosed NET. Like you, I have been having tummy issues until I had a gastric bleed in May. This then prompted a FIT test which came back as positive. I had colonoscopy 2nd of July and 17th of July the colorectal surgeon told me that 1 out of the 5 polyps turn out as NET. I had dotatate, PET FPG, and MRI of liver. And blood test. 
    waiting for the appointment is so stressful and unbearable. Finally, I will see the oncologist tomorrow to discuss the results.  
    please do not feel alone, I am also new to this forum but sharing experiences helps a lot. Sending love to allxxx

  • in reply to Rodders

    Hope you hear seen regarding your MRI appointment xx 

  • in reply to Waterfalls

    Ive just had to dash to my gp to have bloods done. The hosp have booked me in for the mri this monday! PANIC!

  • in reply to Rodders

    That’s very positive! Xxx it will take time for them to release the report but atleast u will have the MRI on mondayxxx goodluck xx 

  • in reply to Rodders

    It took them 3 weeks to release my MRI liver report which ended up delaying my oncology appointment last week. 

  • in reply to Waterfalls

    Wishing you all the best for tomorrow! I know after the mri they will then discuss it all at the next mdt meeting, so wont hear anything yet.

  • in reply to Rodders

    I’m so anxious on what might be the results but I guess what ever it is, it’s in the early stagex

  • in reply to Waterfalls

    Same here! I went into a blind panic, as the op is getting nearer. Although thats a good thing, im scared. 

  • in reply to Rodders

    Will keep u posted tomorrow x 

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