EUS on tumours near Pancreas - Petrified!

they really need to find the primary, that is important so your treatment plan can be properly formulated. The EUS sounds like a sensible next step. An EUS is a type of endoscopy but with extra 'swiss army tools' including an ultrasound (including a biopsy needle if they need it). They can see much of the pancreas via the ultrasound, they can also see via the camera first part of the small intestine (the duodenum) and obviously down through the stomach.  The endoscopy should get a bit closer than the one you had before which was external to the body - NETs can be fiendishly small. . Many of us have had an endoscopy.  I had one earlier this year, I won't say it was enjoyable but a necessity to check something that was going on with me. 


Good luck with EUS!  And Octreotide scan.  You may need Ga68 PET if they continue not to find anything. 

Hi Belle 

I am sorry to hear about your diagnosis and understand your concern.

I was diagnosed nesrly 3 years ago with a grade 3 NET on my pancreas with liver METs your story is similar to mine... suspected gallstones, then CT scan, MRI, endoscopy and liver biopsy. It was the liver biopsy which led to the diagnosis of the NETs however they couldn’t get a sample from my pancreas after two endoscopies. I was then sent for a Octreocide scan which didn’t show any other signs of cancer. (Thank goodness) I was then referred to my Oncologist who organised chemotherapy to start a few days later. I can’t praise him enough he has done everything he can to help me. I was referred to a professor at the Royal Free in London who has a team there that are doing a lot of research in NETs they agreed with the treatment I had been prescribed but did offer another type of Nuclear scan called a Gallium scan. I believe this type of scan is only available in about 3 hospitals in the country. My results didn’t come back with any different information. However if your Octreocide scan doesn’t give you the information you need then ask your oncologist to refer you for a Gallium. 

I was initially told that PETs could be treated with hormone therapy however because my tumour is grade 3 this is not a option for me it is also inoperable. 

In my last appointment with my oncologist he was also telling me about PRT treatment which is available at the royal free however I do not know much about that. 

NETs are a relatively new type of tumour and a lot of research is being done and new treatments are being developed so please don’t worry too much there are a lot of people working hard to help people being diagnosed. 

The first time I had chemo was in 2016 afterwards my primary tumour had shrunk and the liver mets were so small they could no longer measure them! I started having pain again around March this year and after a routine CT scan had shown growth in both areas again I had chemo again and again it was successful in shrinking it! 

If you have any questions about anything then just ask I don’t mind discussing anything about my illness. 

Stay positive and get as much professional information, advice and help as you can, remember knowledge is power. 

I hope this helps, I wish you well and a speedy recovery 

Nikki 

Hi Nikki,

Thanks so much for your reply and for the information. 

I am currently waiting for an appointment for an Octreotide Scan and my EUS was recheduled and is now taking place on Monday 31st. The most frustrating part of all of this is the waiting...it’s driving me crazy. It’s now 8 weeks since my CT scan confirmed cancer in my liver and 2 weeks since neuroendocrine was confirmed. I know they tell me that I’m grade 1 so that means it’s slow growing but it still petrifies me. I have been told that monthly Octreotide injections will be the likely treatment all depending on whether i “light up” on the Octreotide Scan. My consultant doesn’t think that surgery will be possible but we should know more after the scan. I hope you don’t mind me asking but are you being treated privately at Royal Free? I have BUPA insurance and I am swaying towards using it, but it would mean an hour and a half  travel to Manchester compared with half an hour to Leeds. Has surgery ever been mentioned to you, it’s great news that the chemo is shrinking your tumours. 

Hugs 

Hi there Belle

Sorry you have had to join us but welcome.

Have you found netpatientfoundation.org which is a great charity organisation who support, educate and provide resources for NET patients and families.

I have learnt patience since I was diagnosed, it always seem I’m waiting for something, Scan, results, appointments...

The one key thing I learnt was almost every NET patient is different depending on where the primary is and the different pathology of the Tumours. What works for one doesn’t necessarily mean it works for another. There is no standard treatment regime it is very individualised. Although there are protocols written from the consensus of Experts  in ENETS.

 You can read my profile. I have no symptoms whatsoever and I remain fit and well, bit tired maybe but that may be an age thing.

Good luck on your journey 

Hello Belle,

My liver mets originated from a gastrointestinal tumour which was removed five years ago but there are similarities. My experience is mainly about the progress and treatment of the liver mets. If you are inclined have a look at my profile which I update periodically.

Best of luck with your treatment and don't panic.

Hi Belle 

no im not being treated privately all of my treatment has been  via NHS apart from one MRI that I had with BUPA when I was  still in the investigation stage. The appointment for a MRI was a long way off and I wasn’t prepared to wait. 

What I will say about the NHS and cancer patients is that they do not hang around once you have been diagnosed, they have been brilliant with me and also my mum, aunt and grandmother. I don’t think you would get any better treatments or Doctors going privately. 

I have had all treatment at my local hospital and have been to the Royal Free twice once to see the NET specialists and once for the Gallium scan. 

I understand that you are stunned and ‘petrified’ at your diagnosis but keep reminding yourself that there are treatments available and that it has been found quite early on  which means you have a better chance of beating it

My tumour is inoperable my Consultant told me that but I did ask again when I went to the Royal Free but they told me the same. It was my consultant who suggested I go to the Royal Free for a second opinion and he referred me. You can ask your consultant to refer you if you want to go. 

Good luck with your scan and finding the primary 

keep smiling 

Nikki x

Hi Belle, I had an EUS and they sedate you it’s nothing to worry about .. it was only way they found well my secondary .. still looking for primary like yourself ! Mine has moved to lymph node never showed on ct or mri .. another hospital found it by a EUS.. I am going through same mine is near pancreas .. please don’t worry about the procedure take care xx