56 years old and newly diagnosed with NET and secondaries in liver

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

I had a different type of cancer, so don't have any direct stories to share, but I noticed that your post hadn't had any replies yet.

I've had a look through the previous posts to see if I could find any mention of people who have liver secondaries and found these. Although most of them are quite old you could still have a look through them. The most recent poster who's mentioned having a NET with liver secondaries is so I've 'tagged' them into my reply to you and hope that they'll pop on and share their experiences with you.

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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Hello Chooch. I have just come online for the first time ever. I have only just joined Macmillan. I was looking for help with travel insurance with my newly diagnosed cancer, and someone suggested Macmillan. I have recently been diagnosed with Neuroendocrine tumour (pancreas) with secondaries in the liver and lymph nodes. I'm a bit older than you, 67, but generally and otherwise a very active and fit person, so it has been quite a shock. After finding something wrong on scans in November, it is still only a supposition that the primary is in the pancreas. I'm fed up with no-one knowing about Net, including my consultant, though I have a wonderful palliative care nurse who is helping with pain.  I won't go on too much now about me and my experiences. I'd love to hear more from you, and I will wait until you come back before writing any more, in case the time gap means you've given up waiting for another NET person. PS in case this is helpful, a friend's acupuncturist (!) told me about the neuroendocrinecancer.org charity. They are small, but very specialist and they really know their stuff.  They've been terribly helpful in helping me to understand the secretions caused by my primary tumour.  But lastly, Chooch, I have just come back from 5 days walking in Arran - it's possible to live and enjoy life despite the peculiar and rare nature of this disease.  

Best wishes in the meantime

Jennifer 

JenniferAnne

Hi Jennifer and a very warm welcome to the online community

I'm sorry to read about your recent diagnosis and see that you have mentioned about getting travel insurance.

Unfortunately it can be more difficult to find travel insurance when you have had a cancer diagnosis so could I suggest that you come and join us over in the travel insurance group where you'll find lots of recommendations for travel insurance.

To join just click on the link I've created and once you've done that look for the thread called 'recommended travel insurance' as it's where the majority of recommendations from other forum members are. The thread is usually on the first or second page.

Most people recommend to phone the insurance companies rather than try and do online quotes as sometimes they can refer to the underwriters to see if they would cover you when an online quote might just give you a straight refusal. 

Make sure you have all the information to hand about your diagnosis and treatment before phoning. This is a list of things an insurer might want to know and some insurers might ask for a letter from your doctor to prove that they have given permission to travel.

I do hope that you can get insurance and that you have a lovely holiday wherever you decide to go.

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Hi Jennifer. Firstly, thank you for your response. It felt quite lonely in those first few weeks after diagnosis but I have since found the Neuroendocrine UK forum which has helped a lot. Since my first post I've had several different scans and started treatment with 28 day Lanreotide.  Waiting on results of the scans is difficult but I'm working from home and trying to keep busy. Carcinoid syndrome has caused some problems with my heart valves so I'm waiting to hear whether I need surgery. I have days when I feel really low but I'm a bit better this week. I'd like to keep in touch Jennifer . Take care x

Hi Chooch,

I am 65 and also have an NET in my pancreas and 2 secondaries in my liver. I was taken into hospital in December with severe diahorrea & vomiting and after an endoscopy, CT scans & an MRI was sent home on new years eve with a cancer diagnosis and informed I probably had Zollinger-Ellison Syndrome as well.,

I have since had two more endoscopies, one with ultrasound & fine needle biopsy, a PET scan and a Tectroyd scan which has confirmed the diagnosis. 

The sickness was caused by the ZES but that is now been kept in check with large dose omaprezole and I have more blood tests next month with a 24 hour urine test.

The Gastroenterology consultant who I saw before being passed on to Oncology was brilliant & reassured me that the tumor is slow-growing so, yes, I think you are right to be positive.

Keep Well