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carcinoid, islet cell, endrocine, neuroendrocine cancers.

isletcell's picture
Posts: 68
Joined: Mar 2004

I just want everyone to know how important it is to see a specialist.

There are only 6 in north america. Most likely your insurance will cover it and most of the specialists will consult with your oncologist.

PLEASE go check out the Carcinoid Foundation web site. It has a list of specialists, And tons of info for all of theese cancers listed above. Not just carcinoids.

The World experts are in Sweeden and see 35 neuroendrocine paitents a week and have 15 beds in their hospital dedicated to this.

I cant stress enough how important it is to see a specialist before recieving ANY TREATMENT. I cant tell you haw many paitents that I have met that have had Chemo or other treatments that are not effective in this very rare cancer. Unfortunatly, Most Oncologists have the best intentions but, just have very little knowledge.

You can talk to the carcinoid foundation about all of theese cancers and they are so nice and will give you tips on how to best handle your own case.

I know how desperate I have felt and I couldnt live with myself if i didnt share this info with you. You can also sighn up for the ACOR site and I introduced myself and I was shoked to meet many people with exactly the same cancer as me. You should register under the carcinoid page even if you dont have a carcinoid. this is where everyone with nero endrocine cancers seems to be. There is so much hope. There is alot of reasearch being done and many clinical trials as well. Its another wonderful recorce. I cant tell you how isolated I felt until i found theese sites.

Good luck with your journey. And please feel free to E-Mail me directly if you need any info. Also my page has links to theese sites.

Take care,

Posts: 2
Joined: May 2004

I just came out of hosp. this week. Had a tumor removed and a axillary disection. I had a small lump under my arm in breast area. Felt flat and had a bruse over my skin. Nothing to do with breast cancer. It's name was neuroendocrine carcinoma. The 15 nodules removed from the axillary disection came out negative. I am in a healing process from surgery. Appointment with my doctor is next week. What do you think that i'm supose to expect now? Nobody has heard about this very rare cancer showing up in the breast tissue.

Posts: 1
Joined: Aug 2004

Hi Jen, I was recently diagnosed with a neuroendocrine carcinoma located in my small intestines (Ileal). I have consulted with 4 surgeon in my area, Newport Beach Ca. I have finally made a decision to go with a Surgeon my upper GI doctor refers all his patients to. The 4 surgeons have reviewed my test results and all are in agreement it is a low grade, slow growth tumor. Very, very rare. My difficulty is in choosing a Surgeon. 3 of the 4 would perform the surgery with Lap assist, while 1 would perform using only 1 incision. Have you found a resource that shows how a particular surgery can be performed?


Posts: 1
Joined: Sep 2004

Hi Jen,
Read your message and i am looking for inspiration as my sister has been diagnosed with neuroendocrine small cell and has been informed by the doctors that she has months left to live. You spoke about the world experts being in Sweden. Do you have any other info on this? Alos some positive experiences to give my sister inspiration as she is in alot of pain at present. thanks

isletcell's picture
Posts: 68
Joined: Mar 2004

If you contact the carcinoid cancer foundation web site then there is a list of names and numbers including the swwedish team. There is also a new very interesting article on their web site that talks about treatment with sandostatin and other info.

You can E mail me directly if you like. I would love to talk. Its been 13 months for me and I finally am feeling like life is back to normal for the most part.
Remember that theese cancers are very slow growing and rare so it would be important for her to see a specialist for an accurate diagnosis. What type does she have and where is it?? Is she having treatment?? These are all questions that you may discuss with the carcinoid cancer foundation. Their web site has so muych info. check it out. I called them and there were very helpfull.Also Sweeden has its own site I believe there is a link to them from that site and you can post questions for the specialists and they respond pretty fast. I sent my entire file off to sweeden and they responded free of charge. They are so great.


emma brown
Posts: 3
Joined: Dec 2008

Jen, your comments were great and I would really like to talk with you further. I just had laparoscopic surgery to remove a lymph node and was told I had a Carcinoid tumor. They don't know the origin yet (said the lymph node could not be the origin). I am devastated and a little frightened and suffering from information overload. Is there anyone out there that can give me an idea of what comes next?were great. I would really like to talk with you further.

Posts: 2
Joined: Apr 2017

I am being worked up for carcinoid. I have highly elevated CgA and high 5-HIAA with extreme flushing of face/neck, sometimes even arms, low blood pressure drops, hypoglycemia, shaking, feeling faint. I had a CT with contrast of abdomen and pelvis and an EGD, but nothing showed except lots of cysts on ovary, one either complex or hemorrhagic. I have octreoscan Mon-Wed of next week, and I'm more scared that nothing will show than that something will. I can't deal with the syndrome anymore. I'm also not with a net specialist, but a gastroenterologist in a small town. I feel lost. I've read so many stories of tumors not being found that I only hope this next scan does show something, just so I can get some type of treatment to help the flushing/etc... It is debilitating when it happens. It's been over a year and it has went from only happening maybe once a month to now happening almost every day, sometimes multiple times a day. I am 33 with 3 children. 

Last year around this same time, I had CgA and 24-HR Urine 5-HIAA done. The CgA was only 18 (Quest 15 and less normal) and the 5-HIAA was normal at 3.4 (Quest 6 and below normal), and I was told not to worry about it. 

A few weeks ago, since my flushing and stuff has gotten so bad, they ran them again. CgA was 70 this time (Quest 15 and less) and 5-HIAA was elevated at 7.6 (Quest 6 and below). I have had EGD and CT of abdomen and pelvis with contrast. They said nothing showed except the ovary cysts on CT and a slightly abnormal z line and hiatal hernis in the EGD. It seems so odd to me that tests have risen so much, but nothing is showing. I'm not sure what to do. After this scan, I guess I'll seek out a specialist whether the scan shows anything or not. 

I hope everyone is doing well. 


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