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Neuroendocrine tumour or carcinoid tumour is this cancer

Posted , 4 users are following.

nikki0301
nikki0301

Hi

please can anyone shed any light through personal experience.

i have found out accidentally from my GP that following a colonoscopy 6 months ago I was diagnosed with having a carcinoid neuroendocrine tumour in my rectum. The hospital failed to inform me and jus sent the report to the gp where it has been sitting for 4 monthhs. I have now been in contact with the hospital and I have an appointment to see the consultant next week. I am at my wits end,  all research on the internet identifying this as cancer, but then I am baffled as to why I was left in the dark.

has anyone else been diagnosed with this and it's not cancer

thankyou

Nikki

0 likes, 18 replies

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  • gadman
    gadman nikki0301

    Posted

    hi  it's a very worrying time for you  it seems to take forever for consultants to decide how they will treat.  Sandy  is on ocreotide injections  he had  to inject himself twice a day for 3 weeks  after this time blood test were done and he was started on. a monthly dose  this is done  by the nurse at hospital.   He  also had to spend many worring months  waiting for test and test results. !   so keep positive and try not to get stressed as this seems to make the symptoms worse 
  • Daffs
    Daffs nikki0301

    Posted

    Hi Nikki,  So sorry it is cancer.  But please don't fret.  Grade 1 is very minor and as you are to have another scope in July, at least they are keeping an eye on it. 

    I don't know why they won't op now.  Maybe because it is so small.  I have never heard of anyone with Grade 1 having the op.  There are many people on macm. with Grade 1.  I'm not saying it's going to dissapear, but at least it is very early and they are watching you.  Please think there are many with Grade 3 and 4 and N1 or more, that need attention now.  Theirs will and has probably spread to liver and lungs.  I know thisw doesn't help much, didn't for me either as I thought if they would act now, I wouldn't get to that stage.  But, I'm sure they are treating me for my cancer as is now and taking all necessary steps to prevent it from returning. 

    All your questions write down and ask your consul. next time.  But you have to know what questions to ask to get the answers that will help you combat this thing and that I got from others in my stage. 

    gadman seems to be able to help you best as her hubby has it. So, wish you both well.  Godbless,  Daffs

     

    • nikki0301
      nikki0301 Daffs

      Posted

      Thank you so much daffs and gaddman

      What is macm. Is it the MacMillan website.

      Good luck and GOD bless you all x

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