New Diagnosis Carcinoids in the stomach

Hello
My husband has just been diagnosed with having 2 carcinoid tumours in the stomach. He is waiting to have a further gastroscopy but the consultant a surgeon (not one who is a specialist in this area) is already talking about surgery (either partial or complete removal of the stomach). We are in complete shock. Incidentally my husband has no symtoms. The carcinoids were discovered by chance when he was having a gastroscopy due to acid reflux problems (which as far as we know aren't related). The consultant who carried out the procedure (different to the surgeon) sent my husband for a CT scan which as far as we know was clear. However we now know that CT scans will not find small tumours.
We feel that having this surgery will take away my husband's quality of life and also mine as we travel a lot and enjoy good food. Is there anyone who has got the same/similar diagnosis and who has either had surgery or another form of treatment? We would so like to hear from you. We are waiting on an appointment for a second opinion which we persauded our GP to make.
Thank you

Hello - welcome to the forum but sorry you have to be here. My husband was diagnosed just about a year ago with carcinoid (NETs) in the small bowel and liver. He can't have surgery, due to other medical reasons, which means I can't give you much help in that direction. However, I see you have asked for a second opinion and hopefully that will be at a NET centre. There are some listed on this website, one of which may be within travelling distance. I understand that if the tumours are found early enough before any spread to the liver, then surgery can in some instances mean a cure. This is rare though as most patients do not get diagnosed until the liver has become involved and symptoms emerge. So, if your hubby has been picked up early it could be a lot more positive than you will be feeling at the moment.

Hopefully others who post on the forum might be able to help you more as I am still a "beginner" with this disease compared to others. It has been very quiet on the forum lately but I suggest you look through the articles on this website and get as much information as possible, so you are armed with some knowledge before your next appointment. Good luck and keep in touch.
Regards to all
Jenny

Hi sorry to hear too that you have to be on here. I was diagnosed about 12 years ago as having a gastric carcinoid in my stomach after asking to see a specialist regarding difficulty in swallowing. My GP had said it was because I was depressed and prescribed Prozac which I didn't take as I wasn't. Thankully I saw a specialist who then referred me to the surgeon at the local hospital who told me that part or all of my stomach needed removing which terrified me. In the meantime, the specialist fortunately referred me to Dr Caplin at the Royal Free. He did all the scans very quickly and I had the primary tumour removed by ultrasound endoscopy at the Middlesex Hospital. Since then I have regular endoscopies and scans as needed at the Royal Free as my local hospital don't know how to do the endoscopy, reading up on the internet about it whilst I am in the theatre. I don't know where you live but it would be a good idea to ask to be referred to the Royal Free.

Good luck, Frances

Hi Just posting for a bit of help myself. It looks as if I might need an endoscopy and am a bit concerned about local hospitals maybe not skilled with carcinoid . It may be nothing to do with the diagnosis I have but wondering if I should request the endoscopy done at the royal free as I already am a patient there. Travelling there is a bit of a hassle but if its done best then theres no contest.

Wishes to all Gill

Hi Gillian
I also was concerned when told I needed an endoscopy, so I discussed with my consultant and she decided to give me some octreotide just to cover all eventualities. So I had it about half hour before the procedure, I was sedated and had a lovely sleep and was allowed home when the octreotide finished. I was absolutely fine and this was done at my local hospital. Hope this helps

Sally

Hi Supatx

I don't know much at all about carcinoid in the stomach, but...

Here's a link to the latest treatment guidelines of the North American NET Society. I hope its useful - I haven't read it yet - it will be quite technical, but I reckon its worth taking as many hours as it takes with medical dictionaries etc, to figure out what's going on inside and to get a better understanding of what the doctors are saying (and what they're not saying).

http://bit.ly/dCPHSZ

(I've copied this from Josh Mailman's post on the ACOR carcinoid page)

The link takes you to the latest edition of the journal "Pancreas", which includes the latest treatment guidelines for all neuroendocrine tumors, as well as for stomach carcinoids, so it could be of interest to all us noids.

Good luck!

Hello
Thanks to all of you who have responded. We have a referral to QE Birmingham where the specialist trained under Professor Caplin. It is a bit far for us to travel to London although we realise that Professor Caplin is the leading authority in this area. We are interested in the idea of removal by ultrasound and hope that will be an option open to us. David I will follow up on the link you gave me - thank you.

Hello Frances
We are interested to hear more about your treatment. What size was your tumour (it sounds like you had one) - just so we can judge if the ultrasound treatment might be suitable for my husband.
Thanks

Hi

Its good to hear there's a specialist in Birmingham as well - Birmingham doesn't get a mention in the list on the front-page of this website for some reason. What's his/her name? - maybe the list should be updated.

If technical stuff helps you at all there's also the european guidelines (it seems that this is one of the few areas where europe is ahead of the USA) - the article on gastric carcinoids also has pictures, if you can stomach them (if you'll pardon the expression):

http://www.neuroendocrine.net/pdf/guidelines/Well-differentiated%20gastric%20tumors.p df

And the european guidelines and standards of care for all neuroendocrine tumors are at:

http://www.neuroendocrine.net/guidelines_tnm_classifications.html

Bye for now

Hi Supatx

Glad to hear that you have been referred to Birmingham, hope you get the help and advice you need.

The carcinoid in my stomach which was removed by ultrasound endoscopy was 3mm across, since then more polyps have been found so I am to have another endoscopy at The Royal Free shortly. I was having routine scans and endoscopies at my local hospital to save all the travelling, it can take up to 4 hours to get there from Sussex. But after 2 stressful ones last year when I was told again I needed surgery to remove my stomach, it was redone at the Royal Free and will be done there in the future. The same goes for any CT scans needed as again they weren't being done properly locally despite my querying the procedure on the day,so needed redoing.

Frances

Hi Gill,

As you all ready go to the Royal Free I would be inclined to have the endoscopy there although I know you have a longer journey than I have. The Royal Free wants me to go there for everything now as going locally to save travelling has not worked out and has caused a lot of stress one way and another.

Best wishes,

Frances

David
Hello David
The specialist's name is Tahir Shah at the Quenn Elizabeth's Hospital Birmingham
Thanks for all your advice
kind regards
Supatx

Frances Barlow
Hello again Frances
Thanks for getting back to me. What clasification type was your carcinoid?

thank you
Supatx

Hi Supatx

I have type 1 carcinoid, I also have pernicious anaemia which is a factor.

Regards

Frances

Frances Barlow
Hello Frances
Thank you for that information. We hope to see the specialist next week and find out which type my husband has.

Good luck with your on going treatment and thank you for all your help
regards
Sue