Colon cancer NET onto liver

Hi Bubs and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I don't have the experience you're looking for but I noticed that your post hadn't had any replies yet. 

I typed 'liver net' into the search bar in this group and found these previous posts which match that result. You could have a read through some of the more recent ones.

I also noticed that Sax posted only 4 months ago about having a liver NET so have 'tagged' them into my reply to you in the hope that they'll respond and come here to tell you about their experiences.

You might also like to post in the colon cancer group to see if there are people there who have colon cancer with liver NETs. If this is something that you'd like to do clicking on the link I've created will take you straight there.

It would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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Hi Bubs,

they thought I had bowel cancer secondaries in my liver and removed three and then discovered they were NET secondaries. The removal was successful, they then had to find the NET primary which they discovered in my small intestines - 2 of them. These have now been removed and I am on monthly Somatuline injections.  I have recovered from my surgery and doing really well. 
if you want more details do let me know.

I hope all goes well.

Hi Sax

Im 67 year old man living in Exeter with recent diagnosis of primary liver cancer with NET. 
Im just starting out on my ‘treatment odyssey’ but trying to get referred to UHS a NET Centre of Excellence hospital in Southampton.

I lost my sister to lung cancer a year ago and I’m very aware of the need for getting the right treatment asap so I’m going to try to arrange an initial private consultation with NET specialist at UHS to expedite matters.

Your situation sounds like it’s a bit more complicated version but you sound like you’re doing well.

best wishes 

Steve

So sorry to hear about your sister Steve.  I guess that makes you more anxious about your situation.  
You are right to get to a centre of excellence as so many doctors don’t fully understand NETS.  At a centre of excellence they will know immediately what is best for you.  As you have no doubt read NETs can be controlled successfully for many many years - I am 70 and expect to die from old age tether than NETs.

I wish you well in your journey.