My Husband has ben diagnosed with Neuroendocrine Tumours.

FormerMember
FormerMember
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Good morning, my husband has been diagnosed with Neuroendocrine Tumours.  His primary sight is his left kidney whioch we understand to believe extremely rare.  Last week we were told that they have spread to his bones, (Spine, Hips, Pelvis and Skull) and in his liver.  We understand this to be a non curable cancer.  We feel very alone in this and to do not know where to start with any organisation of our lives.  We have two daughters 24 and 20.

Any advise would be most welcome.

Angela Saunders

  • FormerMember
    FormerMember

    Good morning Angela.

    There is a Neuroendocrine Tumour group on this site. You are welcome to read my Profile, click on my user name Mitzie10, top right of page.

    NETs are complex and need a Specialist Team to advise.  The best resource is netpatientfoundation.org 

    The main question is....where is your husband being treated?

    Chris

  • FormerMember
    FormerMember in reply to FormerMember

    Hi, He is under Dr Munir at Sheffield Hallamshire/Northern General

    Angela

  • FormerMember
    FormerMember in reply to FormerMember

    W are registered with the net patient foundation.

  • FormerMember
    FormerMember in reply to FormerMember

    Great Sheffield is a Centre Of Excellence so you are in good hands. You should also be able to access the NET Specialist Nurses who will be able to answer any specific questions you have as they will know and understand your husbands particular case.

    Great that you are registered with NPF, they are my go to web site for information.

    Do you have any specific questions?