11 August 2017 at 12:41 am #55083
Newly diagnosed would love to chat to someone on same position ?11 August 2017 at 5:51 am #55085
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
Chris11 August 2017 at 7:46 am #55086
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 ?11 August 2017 at 7:47 pm #55088
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
Chris12 August 2017 at 8:38 am #55090
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.
18 August 2017 at 12:30 pm #55148
- This reply was modified 4 months ago by Rollipo.
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 .18 August 2017 at 12:32 pm #55149
Iv not been referred to specialist but have lots of questions so am thinking about asking for referral for further information .18 August 2017 at 3:12 pm #55158
hb….where do you live?
Chris18 August 2017 at 3:53 pm #55159
South west , England19 August 2017 at 7:15 am #55160
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.
Chris20 August 2017 at 10:14 pm #55163
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 .22 August 2017 at 9:31 am #55165
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