Appendix net

Home Forums Chat Appendix net

This topic contains 11 replies, has 4 voices, and was last updated by  Lindsey Devlin 1 month, 4 weeks ago.

Viewing 12 posts - 1 through 12 (of 12 total)
  • Author
    Posts
  • #55083

    hb
    Participant

    Newly diagnosed would love to chat to someone on same position ?

    #55085

    CD
    Participant

    Morning, I have recently been diagnosed with lung NET so it’s all a bit scary! There are a couple of FB sites that are really great support, you can probably link to them from the Home page. Or search on Facebook.NET Cancer blog. I joined a specific one for Lungs on Nikie recommendation . Have you looked at the downloadable PDF file from this site. It’s brilliant.
    Good luck with the research, I’m sure someone else will be along to help
    Chris

    #55086

    hb
    Participant

    The information available is all very limited and my doctor has explained due to lack of research there’s a lot of questions he can’t answer . Thank you for your reply . What stage are you at in the process ?

    #55088

    CD
    Participant

    Are you under the care of a NET specialist team as I think you will find a lot of information. Where do you live? You can always email the nurses at the netpatientfoundation are ask them to point you in the right direction.
    I have just started Chemotherapy and under the “care of” Royal Free Hospital but have not seen them yet.
    I would also suggest ronnyallen.com as a great resource on NETs
    Chris

    #55090

    Rollipo
    Participant

    Hi Hb, sorry to hear about your diagnosis and lack of answers. Back in April they found 2 net tumours within my appendix. Do you know the size of it and whether there has been any spread? I can only talk from my experience.

    • This reply was modified 2 months, 1 week ago by  Rollipo.
    #55148

    hb
    Participant

    Thank you for responding . I had an appendicitis where the appendix was found to contain a malignant 2.5cm Tumor at grade 4. Octrocide scan and ct scan being done next week and then hemicolectomy. I’m just hoping scans don’t reveal any thing else .

    #55149

    hb
    Participant

    Iv not been referred to specialist but have lots of questions so am thinking about asking for referral for further information .

    #55158

    CD
    Participant

    hb….where do you live?
    Chris

    #55159

    hb
    Participant

    South west , England

    #55160

    CD
    Participant

    There are centres at Oxford, Southampton and London. You are having the specialist scans, so someone is on your case. Once the results of your scans are through a lot of discussion goes on at MDTs but I’m sure you will be put in contact with the NET Specialist Nurses at whichever is your nearest centre.
    If you need some answers now you can either phone or email the nurses at netpatientfoundation. Their contact details are on the homepage.
    Chris

    #55163

    hb
    Participant

    Thank you Chris much appreciated . I suppose the scans will answer my main question if it has spread. And I want to know about chances of re occurance .

    #55165

    Lindsey Devlin
    Keymaster

    Hi hb, you have had some great advice and support from the forum. If you would like to contact me or Nikie we are always happy to chat [email protected] or 0800 434 6476.
    Bw
    Lindsey

Viewing 12 posts - 1 through 12 (of 12 total)

You must be logged in to reply to this topic.

Join our NET Community

Sign-up for our email newsletter. Simply register with us to receive regular updates.

Register now