Neuroendocrine/carcinoid cancer

Hi Julie,

just wanted to say hello - my husband was diagnosed with neuroendocrine cancer July 2007, in his pancreas. After initial op he  now has liver mets and is being treated for that. I agree its is very rare - no one i speak to has even heard of it! In the end i just tell them liver cancer as its easier!

I have has breast cancer too - so not too much luck in our family!

Carol

Hi, Carol, i hope you and your husband are keeping well, you are really having a bad time of it, your luck has got to change soon. Is your husband having any treatment and how is he getting on. Please keep in touch and let me know how you are both getting on, i also now have liver mets and find it hard to explain to people what it is, they hear the word cancer and think its like all cancers but its not and what makes it harder i look so well, even when i am not.

Speak to you soon Julie

Julie, lovely to hear from you, as you say it is so good to talk to someone who understands about this kind of cancer. You are the first person i have "met"! My hubsands story goes like this - in July 2007 he was having a routine kidney scan (as he has recuring kidney stones) - at the consiltation the doctor was very agitated - i knew something was wrong - he kept lookinmg at the notes, the x ray etc and then said - hasnt anyone talked to you yet? At that point a nurse came in and held Robs hand (just like they did when i was diagnosed) - so i knew then it was bad. He said there was a very large tumour on the panceas and that basically with pancreatic cancer there is usually only palliative care available. We were shell shocked, but then the "proper" liver consultant spoke to us and when he found out that Rob was not in pain, had no symptoms and was not jaundiced - he agreed to refer us to a specialist in Newcastle (we are from \Middlesbrough). Luckily they agreed to operate and found out that it was a neoroendocrine tumour - they removed most of his pancreas, his spleen, and part of his liver (as it had already spread). Since then he has had regular scans and in July this year was found to have 7 tumours again on his liver. He has just undergone keyhole surgery and they have "ablated" 4 of the tumours. He has recently been on octreotide, a low dose, and was hoping to have the 3 weekly injections like you have - but even on this low dose he couldnt cope with it as he had severe diarrhoea (as in he couldnt even leave the house and wouldnt eat anything). we are now at the stage where they are seeing what else they can do - but basicaaly it is likely to be regular scans so that they can catch any new tumours at an early stage and operate on the present 3 tumours remaining when they grow a bit.

Phew! Hope i havent bored you silly!

I agree it can be very difficult for people to understand because it is not a common cancer that everyone knows about.  As you say, Rob looks well, but is tired all the time and really quite depressed due to the reoccurence. Its funny - i had chemo and of course it wasnt pleasant - but what we would give for Robs cancer to be treatable with chemo - at least you feel you are doing something!

Anyway, please keep in touch - if you want i will give you my e mail (is that allowed on this site) - and then we can chat and keep upto date with each others progress?

Carol (and Rob)

Hi, Carol, i will try and request you as a friend, might make it easier to give you my email address, as i am not sure if they let us post it on the forum, well here goes, speak to you soon

Julie

Hello

Carol & Julie

I have just joined the group as i am at present being tested for carcinoid cancers.

I have all the symptoms (since june 2008) and am waiting on calcitonin, 24 hr urine test  and cga bloods to come back.

I suffer with bad flushing, diahrea and fatigue.

I had my thyroid removed due to papillary cancer a year ago and have ongoing treatment for that as well.

The carcinoid symptoms started before they found the thyroid papillary cancer but maybe that is the secondary we don't know yet.

I was looking for support and advice and wondered if anyone around to help me?

Love Dawn (ps i live in Milton Keynes)

Hi Julie

I am at the moment having test for carcinoid syndrome.

I have been suffering since june 2008 wit symptoms of diahrea facial flushing, etc.

I am waiting for test reslults on 24hr urine test, calcitonin and cga bloods.

What symptoms, tests have you had done?

I live  in Milton Keynes.

I am looking for someone who is or going through the same as me but as we know it very rare.

I had thyroid cancer (papillary) so full thyroid removed a year ago and ongoing treatment Radioactive Iodine Ablation. They now wondering if this a secondary or not linked but just bad luck???

I do hope you respond back to me.

Dawn

Hi Dawn,

sorry to hear you may have carcinoid tumour - if you have read above posts you wil know i have had breast cancer and it is my husband Rob who has had carcinoid./neuroendocrine cancer since 2007.

Of course i will help you in any way i can, and hopefully give  you some support. Not sure what i can tell you about symptoms as Rob didnt have any when his cancer was found by accident! Due to his present treatment he has been having bad diarrhoea and is very very tired but we have been told his energy levels should now get better as he recovers from keyhole surgery (ablation of 4 tumours in liver).

Anyway please keep in touch, its nice to talk to other people who are/have been in the same boat!

Love Carol (from Middlesbrough).

Hi Carol

I hope Hubby is doing better each day?

I was wondering if he has the injections to help with the diarrhoea? How did they find out ? is he under Martyn Caplin at the Royal Free in London?

What tests did he have to go through? sorry if i keep asking question after question but i am in a horrid place at the moment not knowing what is going on? all these tests take weeks to come back and i don't know what to expect?

Dawn

Hi, Dawn , just seen your posting, i have not been on the site for a few days, have been having the usual scans and tests. I am under the Royal Free hospital in london as well as my local hospital in the west midlands. I have MRI scans CT scans and Gut hormone blood tests, 24hr urine tests done at my local hospital and i go to the UCH london for a Gallium 68 Pet/ct scan, then all the results are sent to the Royal free for them to look at and decide what treatment i can have. At the moment i am on Sandostatin lar 30mgs every three weeks, which i have done at my local hospital. I have carcinoid tumors now in my liver, which means i have the symdrome. Once you have had the results back from your tests they will be able to give you the right treatment, but i know sometimes there is a long wait to get the results, but carcinoid is usually slow growing, so try not to stress  to much, i hope this helps a bit , if you have anymore questions i will try and help.

All the best Julie

Hi Julie

Thanks for replying.

What is gut hormone blood test? & how long did 24hr urine test take to get results?

Do you see Martyn Caplin? & how long did it take for you to get appointment with Royal Free?.

Do the injections stop the flusing and loose bum??? and did you start off with the daily injections?

Sorry about all the questions but so glad i found someone to talk to i am so in the dark no-one telling me anything.

Dawn