Neuroendocrine tumour primary small bowel secondary liver. Liver is apparently covered in tumours.

Hi Rache

sharing my experience hope it helps x

dont despair,  it’s a shock and a difficult journey but things will be better once we adjust to our new normal (which can change quickly and dramatically from my own experience) 

people can and do live decades with cancer even those with liver, lung, pancreas tumours that are inoperable - I have spoken to some and it was so therapeutic for me - people stage four NET diagnosis  living 15/20 years it was best medicine for me hearing these first hand stories 

i had primary ilium and mets to liver and pancreas

i was sure I would die for a while after liver/pancreas tumours found 

Like you I was not a candidate for  chemo or radio treatment just Sandostatin injections (if your tumours don’t have receptors for chemo or radio then it won’t work)

I am stage 4 with no evidence of recurrence of disease since 2019 

I have been lucky and had well-differentiated  neuroendocrine  tumours removed 

Strictly my personal experience/case,  I was initially told my cancer in liver and pancreases was inoperable so I sought a second opinion and had successful surgery on both liver and pancreas to resect both and remove tumours (original opinion was from NET specialist team who carried out surgery they said was inoperable - messes with my head a bit even now)

people have told me they have had debunking Radio Frequency Ablation to decrease tumour load 

again strictly my personal experience - I went to a hot climate while I had tumours and the sun made me very unwell - not sure if it was just me or if  sun affects NET - but I had severe flushing and was very sensitive to sun (I stayed three days then  booked a flight home and went to A&E once I got to England) 

you can Google counties that provide reciprocal care to UK residents if you fail to get travel insurance (this means you will receive free health care but beware each country has own policies so need to research what’s available where you intend to travel) 

Hi Majjii

Thank you for sharing your story, that did make me smile when you said about 15-20 yrs. I have been told they will operate on my small bowel and associated area but apparently my liver is covered so he won’t operate, he did say if some reduce in size or die off he would review but at the moment the numbers are very high and fully cover all my liver. 
It is certainly a huge shock when you hear inoperable and incurable, I’m so happy you sought the second opinion and got the fantastic news!! 
I hope the sun doesn’t affect me but I’ll certainly keep my eye on how I feel instead of just ignoring any symptoms. 
thank you so much again for sharing 

Take hart and allow yourself feel all the emotions, Macmillan helpline always help me when I have scans and appointment I can get a bit wonky and not trust the doctors (due to experiences I’ve had) 

it’s surreal but I play mind games with myself pretending it’s a good option - I could have an accident, stroke, heart attack or another major illness and it helps me think it could be worse it’s my way of coping…….. 

yes the sandostatin can shrink or reduce tumor growth so fingers crossed for you 

Hi Rache, 

I just came across your post and couldn’t not reply…my husband (41) was also diagnosed with exactly what you have: small bowel primary with multiple liver mets! Like you, we were shocked, confused, felt life could never be normal again. Like you, tumours all inoperable. Sandostatin every 28 days for carcinoid syndrome symptoms (which was how he was eventually diagnosed after years of us thinking he had allergies!). But even now just a few short months on we have taken great reassurance from his medical team who keep saying he’ll likely have ‘decades’. It still hits us in the gut every now and then but I’m general, life is backally normal and he’s still working as usual, managing young family life and we just are trying to focus on the good stuff!! 
I hope you’re doing ok - I can’t imagine what it’s like to be the one to actually get this news. I do have long term illnesses myself since I was in my early teens (vasculitis, lupus etc). But cancer is the ‘big scary thing’ that we all seem to fear the most. My parents in law still struggle to even say the word ‘cancer’ when they reference it: but I make a point of saying it as much as possible to take away its power if that makes any kind of sense! Sending you warm thoughts 

PS apologies I’ve just seen that they can actually operate on your primary - that’s great! I think different trusts have different approaches. Here we were told that outcome isn’t changed much with surgery or not (but as you know with this type of cancer, each and every patient is so so different with lots of factors influencing treatment)

Hi ya, it sounds like life is very tough for both you and your husband. I was initially told by the local hospital that it was inoperable but in Jan I saw a London specialist. He said it would be better to operate on the primary bowel etc as blockages in the bowel would be serious implications possibly resulting in emergency surgery, so I opted to have the surgery sooner rather than risk emergency surgery (without all the safety precautions) of preplanned. It is definitely worth asking a specialist about the tumours in the bowel and possible blockages. I will still be left with a liver full of tumours but I'm hoping my surgeon will clear all the others in my bowel and mesenteric, fingers crossed. 

I went to Dubai in Jan to escape and I loved just laying in the sunshine and enjoying two weeks without giving cancer a thought, also no one mentioning that I've lost weight etc. 

Apparently we can still enjoy a long and happy life with NETS and I intend on giving it a run for it's money  . I still work full time I do get tired easier but I don't give in to it.

You sound like you have a good positive approach too, if you ever want to chat or discuss anything just send me a message and ill help wherever I can ️ 

Hi read your posts with interest. I thought I would share my experience as might help.

I had a low grade NET in Pancreas removed successfully around 10 years ago all went well or so I thought

Then around 2 years later with improvements in MRI scanning they found marks on my liver that turned out to be NETS tumours. Over 30 of them  (tiny a few mm each) too many and well spread to operate. Importantly they are sure they were there when I had my operation a few years earlier and had not changed in that time.

A bit of shock to say the least!

My specialist took a calm approach and put me on monthly injections Somastatin or Lanreotide to be precise. Just to try and make sure they did not progress. I have been on these monthly jabs for around 8 years now. Luckily for me no problems with the monthly jabs and no side effects at all. Plus no change in the size or numbers of tumours to this date. I will never know if the monthly jabs have done the job or just my body.

I am fit and well in my early fifties now and live a normal life. So remain very hopeful and guess with time learnt to live with it.

I know each person is very different and I might be lucky.

However when I was given the news it was hard to imagine that I could live with these things in my liver for such a long time and to believe what I was being told could work.So not easy to remain hopeful at times in the early days. As you cannot easily find people in the same boat to talk to. So I was compelled to reply reading your posts online.

So I guess I am living proof that you can live a long time and it is not totally unrealistic to be hopeful for the future. All the best  

Hi I have recently seen my specialist following a 6 month PET scan. It appears my liver tumours have doubled in size. I was told about a treatment called PRRT. I can have 4x rounds of treatment rescan in 24 months if regrowth is showing I can have 2 more rounds. I hoped I would just live my life without further implications however my body had different ideas. Following my surgery my pancreas has decided not to work but otherwise I ignore everything and carry on as normal. I have been informed PRRT will wipe me out and affect my immune system. Has anyone had PRRT? Can I carry on working as normal or am I being naive ? Has one one had PRRT please  xx

Hi Rache, 

I didn’t want to read and run as I know this group is very small and very quiet. I’m so sorry you’ve got bad news recently, my heart goes out to you. No experience of PRRT here but I know that is the ‘next line’ for my husband if/when the Sandostatin injections stop doing their thing. So I’m of not help but I was to let you know that I’m still here and anytime you want to talk or write things down here, I’m listening. Sending you the best wishes possible x

Sending huge hugs to you ️ xx