Thanks.

Tried to summarize above.

Hi jaz05

My advice is to seek out a carcinoid specialist - I know there are some in Canada - before you let anyone operate on you. It sounds to me (a non-medic) that you have classic carcinoid syndrome and an operation undertaken without proper pre-treatment could trigger a carcinoid crisis.

Have you checked out the Canadian Carcinoid-NeuroEndocrine Tumour Society ..www.cnetscanada.org ? This is an extract from their pages

Carcinoid-Neuroendocrine patients in Canada, and nearby border US states, as well as significant others, special friends or family member are welcome to become part of their local Carcinoid-Nets Support Group.
Aimed to listen, educate, advocate, support, as well as to enjoy one another's company, support groups exist in the following provinces... (You are not alone!)

ATLANTIC PROVINCES
New Brunswick Carcinoid-Nets Support Group
Please contact Cathy Geddes, geddeslf@nbnet.nb.ca • 506-849-8155

Newfoundland Carcinoid-Nets Support Group
Please contact Jen Bell jeninstjohns@gmail.com • 709-739-9137

Nova Scotia and Prince Edward Island Carcinoid-Nets Support Group
Please contact Colette Morrison physio@ns.sympatico.ca • 902-295-2955

QUEBEC
Montreal Area Carcinoid-Nets Support Group
Please contact Nycky Thevenet nyckyschon@yahoo.com • 514-425-1734

ONTARIO
Toronto Area Carcinoid-Nets Support Group
Please contact Maureen Coleman maureenc@sympatico.ca • 416-544-8467
Please contact Noreen Lebowitz lebo74@rogers.com • 905-731-8598

Hamilton Wentworth Carcinoid-Nets Support Group
Please contact Barbara Bell babocb@hotmail.com • 905-545-8277

Kitchener Area Carcinoid-Nets Support Group
Please contact Frania Banks frania@metromail.ca • 519-653-3641

Ottawa Carcinoid-Nets Support Group
Please contact Morley Dore barbandmorley@rogers.com • 613-725-3229
Please contact Barb Dore barbandmorley@rogers.com • 613-725-3229

MANITOBA
Winnipeg Area Carcinoid-Nets Support Group
Please contact Silvia Steinhilber nswplas@mts.net • 204-757-4878

SASKATCHEWAN
Regina-Moose Jaw-Saskatoon Area Carcinoid-Nets Support Group
Please Contact Marlis Duff duff.marlis@prairiesouth.ca • 306-475-2838
Please contact Lynne Warden lynnemwarden@msn.com • 306-664-3419

ALBERTA
Calgary Area Carcinoid-Nets Support group
Please contact Gayle Howard get-well2@shaw.ca • 403-217-0217
Please contact Joan Smart smartj@telus.net • 403-233-2031

BRITISH COLUMBIA
Kamloops Area Carcinoid-Nets Support Group
Please contact Dennis Robertson crackersdog@hotmail.com
Phone TTY is 250-374-7477

Vancouver Area Carcinoid-Nets Support Group
Please contact Barry Jackowich bjackowich@gmail.com • 604-526-6365

Vernon-Okanagan Valley Carcinoid-Nets Support Group
Please contact Joanne Ferguson jjttferguson@shaw.ca • 250-545-3967

Hope this is helpful
Tim

Thanks.

As hard as it is, I'd try to relax and not worry too much. Some people struggle for years to get a diagnosis, but given the extent of your testing, it sounds as though most of your results are in the normal range. Sometimes, even if a carcinoid tumour is present, doctors have a policy of 'watchful waiting'. Whether you have carcinoid or not, you need to try to get some control over your anxieties and get on with your life while this sorts itself out. I wish you well, and hope you find an answer to your health problem.

Best,

Kay

Hi jaz05

I'd agree with some of Kay's comments about trying to get past the understandable but ultimately counter-productive anxieties. You will need to be mentally resilient to cope with cancer - if indeed that is what you have. But I'm not a fan of a "watch and wait" approach to NETS and now in the most recent literature such an approach is no longer favoured. To illustrate the point, I've just had a scan after a 14 month wait and my known liver metastases have doubled in size and new ones have been found in other segments which were previously clear. I suspect that here in the UK, the "watch and wait" approach now suits the accountants rather than the patients. Therapies and drugs are often rationed, even though they would benefit cancer patients.

The experience of many on this site is that carcinoid cancer is often mis-diagnosed -sometimes for years - and the only way you will avoid that is to get referred to a specialist who really knows about this group of cancers. You may have to be pushy to get your face in front of the right specialist but don't let that put you off.

Hi Tim

I am sorry to hear that your liver mets have spread and grown....I was wondering if when you had your liver resection they got all the tumours out and also whether the primary and lymph nodes were removed.

I fully agree with you that with this disease needs watching closely as early intervention is the best way and also theta are a variety of treatments that can be implemented at different stages.

Hi Katherine

Yes, after the primary was removed in 2005, the only visible (on scans and intra-operative ultrasound) metastasis was resected in 2006. But even the most sensitive scans will not detect micro-metastases - that's why "wait and watch" is such a dodgy approach. It depends how watchful they are while you wait!

I suppose I'm a bit grumpy at present but I do feel that cancer patients in the UK are treated as though they are only relevant in the run-up to elections. We get big promises being made by all and sundry which fail to translate into world-class, effective care and access to readily available treatments irrespective of where you live. Cuts in health budgets mean less of us will survive as long as we might if there wasn't a rationing of drugs and therapies.

I know for certain that if I lived in Germany, I would have access to more effective treatments. I'm so reassured by Captain Dave that we are "all in this together". That gives me a nice warm feeling - under the collar! After reading the latest comparative cancer survival statistics for the UK vs the rest of the developed world, does the PM ever look in the mirror and think "Am I part of the problem or part of the solution?"

Rant over.

The medical lottery is quite astonishing....rant perfectly fair and most articulate for so late at night.

My liver op was done in March last year and I have just had results of recent scans which at the moment show no liver mets...next scans to be done in May 2011 I was wondering how long you were tumour free following your resection? I also had primary lung tumour removed. In June 2011 so far no tumours, they also removed as many lymph nodes as they could see via neck.

I know each situation is totally different but always of interest to hear of others experiences.

Hi, I had my last scan in October and don't have another one till the end of April and get the results on the 2nd May. I have the primary in my ileum and metastases in my liver. Although it is nice not having to go back until May it does make me wonder if anything is going to change in the meantime. I am on Somatuline 120 every 28 days so hopefully that is keeping the tumours at bay. I too had problems getting my Gallium PET scan last July at Charing Cross as they couldn't get it from UCH but I got it in the end. They were going to operate and remove the primary and the tumours in the mesentery but decided to wait maybe another 5 years.
Mandy