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Neuroendocrine Tumour Stage 2

Delaney81
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Hi, I’m new to the Forum, my name is Sharon and I’m still feeling very confused from being told last week that I have a Grade 2 Neuroendocrine Tumour in my stomach, diagnosed from a gastroscopy and polyp removal. Consultant did give me an opportunity to ask questions but it was such a shock I wasn’t thinking straight and he is organising a repeat gastroscopy for more detailed investigation. Can anyone who is familiar with this type of malignancy, give me any advice on what to ask at future consultations, or going forward - what I can expect? Is there a recognised life expectancy. I have had symptoms of tiredness and unexplained sickness for the past 2 years. Many thanks. 

I am currently my husband’s full-time carer. He is living with both colon cancer and metastatic liver cancer and his prognosis was 8 months, 2 months ago.

  • Hi Sharon and welcome to Cancer Chat, although I'm sorry to hear you have been diagnosed with a grade 2 neuroendocrine tumour in your stomach.

    You must be contending with a lot of emotions right now, but our community are here for you Sharon and I'm sure it won't be long until some of our members who have been on this journey will stop by to share their experiences and advice.

    I hope this information we have about neuroendocrine tumours will be useful, but if you'd like to talk any of this through with one of our cancer nurses, including how this may affect you being a full time carer for your husband, then do give them a call on 0808 800 4040, Monday - Friday between 9a.m - 5p.m. They will do all they can to support you and answer any other questions you may have at this moment in time.

    Do keep posting if you find it helps Sharon, and remember that you are not alone.

    Kind regards,

    Steph, Cancer Chat Moderator

  • Offline

    Hi Sharon

    Just been diagnosed myself on 29 July ,  with Primary Ovarian Insular Carcinoid G3, which because it's in both ovaries, means it's metastasized ,l so I'm being referred on to a Specialist NET MDT.

    It's taken nearly 5 months to get a diagnosis. My Consultant said it could never have been determined from a scan only biopsy , after having  bilateral salpingo- oophorectomy on July 2

    It's very shocking, since I wasnt expecting it. My Consultant said they're very rare tumours and he had only   seen 3 in 15 years and couldn't treat it. He had no information on NETS to give me, since I need investigation / treatment for the ' primary' site  ( suspected to be stomach/ lymph node ' mass' incidental finding on MRI in June)

    Luckily for us , and with all due respect to Cancer Research , there is a dedicated website Neuroendocrine UK with a helpline who are massively helpful, they gave me some good advice about regional NET Centres etc and was able to give me some - temporary -relief.

    A lot depends on the Grade of your tumour, Grade 1 & 2  are treatable  surgically and with chemo/ medication and prognosis is good , with good survival rates and quality of life. (Grade 3 is more aggressive and much depends on the progression).

    There's a lot of information on this on the website.

    Try to get a copy of your pathology report.

    Best wishes to you and your husband, you've got an awful lot on your plate but take care of yourself , you're not alone,  and once you begin your treatment you'll feel more in control

    God Bless x

  • Offline in reply to Moderator Steph

    Hi Steph

    I've recently been diagnosed with Neuroendocrine Ovarian Tumour and replied to Sharon's post to try to offer some reassurance. It's my first ever post.

    I apologise if I have broken any community guidelines in directing her to another charity website ( Neuroendocrine Cancer UK)

    I found the site invaluable, since my Consultant Oncologist had only had 3 cases in 15 years and cannot treat it nor could he give me any advice about it. I had never heard of it before.

    Luckily I stumbled on the website in a frantic search for information. I spoke to their Helpline who gave me vital information, and I wanted to convey this to Sharon.

    Your site has been very important to me the last few months when I was trying to deal with  the possibility of  ovarian cancer, and I'm very grateful to you. But it turned out to be another quite rare cancer of the ovary and metastatic,  so it unlikely there would be many posts about it ( or they're very old posts I haven't found.)

    Once again, apologies if I've stepped out of line 

    Helen

  • Offline in reply to EllyM

    Hi Helen, 

    Thank you so much for your lovely message and kind comments about our site. I am glad it was helpful to you when you were worried about the possibility of ovarian cancer and I wanted to reassure you that you haven't broken any community guidelines at all in recommending this site that helped you and I am sure it will be useful to others who have been diagnosed with a neuroendocrine tumour. 

    So thank you for your suggestion and also for continuing to share your experience on our forum as we love to have members like you offering support to others affected by this rare cancer. 

    Best wishes, 

    Lucie, Cancer Chat Moderator

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