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Neuroendricine Carcinoma

isletcell's picture
isletcell
Posts: 70
Joined: Mar 2004

Hi! I am a 33 year old female that was diagnosed with a moderatly differentiated malignant endrocine tumor in the head of the pancreas, shortly after the birth of my daughter in 2003. It was removed in sept.2003 after undergoing a modified whipple opperation. Its been 6 months since surgery and I am feeling good. The only thing is I cant seem to get this out of my head. I have been very frusterated with the lack of information available and the lack of support available not only for this type of cancer but for my age group. I would love to talk to anyone who may have any info or resorces on this topic.

georgeanns
Posts: 8
Joined: Aug 2002

Because this is such a rare cancer, I, too have been frustrated by the lack of information on this cancer. Perhaps there are others out there with the same diagnosis who can help?

Thanks for the name of the doctor in Sweden. Would you mind e-mailing me the name of your oncologist? If he is an expert on this, I would very much like my oncologist to call him. Perhaps they can talk. I would also love it if your oncologist would send the e-mails of the experts to my oncologist. Perhaps he could e-mail them as well.

The CEA test is a tumor marker test. I don't think it is the liver test (which tests whether your liver is working or not). It detects a certain chemical in your blood that cancer cells cause. An increase from normal indicates the possibility of cancer present, but it is by no means definitive. The first time I had cancer, my CEA levels were normal. The second time (when it showed up in my liver) it went up to the 300s (normal is 3-5). What is the chromogranin-A blood test?

That is very good news about your lymph nodes. When I had my surgery in Feb. 2003, the cancer was present in one of my nodes, which is why they did radiation.

The tumors in the liver showed up about a year after my initial diagonis. Scans showed no evidence of disease in May 2003 (which was 9 months after initial diagnosis, chemo, surgery, and radiation), then about three months later, my CEA levels starting going up. Scans in September 2003 showed the tumors in my liver.

MD Anderson is supposedly the world-wide famous hospital for cancer. They are here in Houston,Texas where I live. They are a public hospital but receive millions and millions of dollars from private organizations to research and treat cancer. Everyone believes MD Anderson is the best cancer hospital in the world, but they turned me down flat and refused to see me.

I am so happy to have gotten in touch with you. I have felt so alone, so singled out, because I am so young with such a rare cancer. I know exactly how you feel. It seems all the support groups are geared towards older people (50s and 60s and up), or different kinds of cancer, such as breast cancer. But nothing for people like us, who are going through a unique experience. You are very lucky to have had a child, because I didn't, and now I am infertile because of all my treatments. Also, as young people, we have other issues to deal with, such as working, health insurance, paying the mortgage, and (for you) raising kids), things that most people who have cancer (older people) don't have to worry about anymore.

I will try and catch the Sharon Osborne show on Thursday. I do hope it raises awareness of this sight and maybe we'll get more people to share information.

I, too, feel blessed that I've found someone like you to talk to. Please feel free to e-mail me whenever you want, post messages, when you want, or whatever. It will mean a lot to me for us to keep in touch.

I will post my person story as soon as I figure out how to do it. In the mean time, I got potentially bad news today. My latest blood test indicates my CEA level has gone up again (which is bad, because it had been slowly going down with each chemo treatment for the past 8 months). I go for another blood test in two weeks and another scan, and will know more then. This news came as a shock to me, and I am not sure how well I am going to handle it.

Please take care of yourself, and I look forward to hearing from you soon.

Take care,
Georgeann

isletcell's picture
isletcell
Posts: 70
Joined: Mar 2004

Hi!
O.k. I went onto the B.C. cancer web site and looked under neuroendricine tumors and if you scroll down to the bottom there are references. Because mine was an endrocine pancreatic tumor, the expert was this guy out of sweeden. It looks however that under this, is who there quoting for neuroendricine carcinomas.

Moertel CG, Kvols LK, O'Connell MJ. Treatment of neuroendricine carcinomas with combined etoposide and cisplatin: Evidence of major therapeutic activity in the anaplastic varients of theese neoplasims.cancer 1001; 68:227-232)

Thats exactly how its written. Although, Kjell Oberg, at Uppsala universitet in sweeden who it says on the universitys site that the # is 018-611 49 17 or e-mail is Kjell.Oberg@medsci.uu.se and fax is 018-51 01 33. It looks like he has also published a few papers on gastrointestinal neuro endricine tumors. And some on neuroendricine matastases. I Think it would be worth it for your oncoligist to at least e-mail the guy. You should also search the internet for any papers that theese other fellows have published. If anything it will give you peace of mind. There are several sites that have theese papers.
My oncologist at B.C. Cancer agency is Dr. Emil Shaw and He is not an expert in this feild but knows who the experts are I guess. He actually specializes in a different cancer I think??? I think your best bet is to search theese papers and find out who is doing the major research in this feild.
Let me know what you find out. Ill poke around a little and see what i can find for you too. It would be nice for your oncoligist to at least find out what new chemo drugs or combinations are the most effective. But I cant understand why they wouldnt already know.Mabye there are some clinical trials that you could participate in as well.????

The chromogranin A blood test is a tumor marker for this type of tumor as far as I know. When I origanally was diagnosed with a tumor my regular tumor markers were normal as well. But now I get theese tests which are desighned for our type.Also in the material that I have read. It is to my understanding that this test along with PET scans ois the best early diagnosis for neuroendricine and endrocine tumors. There is also the 2 day scan called Octriotide scan.I cant remember if you have had this one?? I know its expensive so they dont like to give it here in canada very often.

I hope this info helps you. I know how hard it is to go through the uncertainty of this disease. And not knowing what our future holds brings so much stress and anxiety. Im so sorry to hear about your new blood tests. Every time theese new tests come up for me I have so much anxiety. I have made a few younger friends including you who understand what its like to deal with cancer as a female in your 30s. You should go to the young cancer survivors area at the bottom of the discussions and chat area. Also, To make a personal web page, you click on the personal web page area and there should be something you can click on to create your own. I cant remember how i did it. I do know that you can search other peoples pages as well.I look Forward to reading your story so I have a better Idea about your history with this disease.

Im going to look around and see what i can dig up for you.Please write back soon.You can Email me directly and Ill get it faster.
Smile,

Jen

ACW32
Posts: 3
Joined: Mar 2004

Hi Georgeann and Jen (aka islet cell),

I will personally e-mail both of you but wanted to post here to let you know that I'm glad you've started this discussion area on neuroendocrine carcinoma. I'm scheduled for my last cycle of carboplatin and etoposide before I switch over to the daily oral etoposide. It certainly is an isolating experience to have such a rare disease, but fortunately we can keep in touch, and hopefully others discover this site.

The malignant lesions on my liver are virtually gone except for a tiny spot just under 5 mm in size. This spot is closely being followed by CT scan every other month. I'm scheduled for another scan at the end of April.

I'm being treated at Roswell Park Cancer Institute in Buffalo, N.Y.

Georgeann, I'm sorry to hear about your CEA levels, but you know as well as I do that these tests don't mean anything in the total scheme of things. You'll handle this very well. Maybe it will be one more hurdle, maybe there won't even be a hurdle at all. Just try not to dwell on the future! (That's easy to say, but...)

Jen, I'm the same as you: Every time I have a test or CT scan I become anxious and somewhat fearful. I'll be praying for both of you as we all trudge down this difficult road.

Adam

mom101
Posts: 9
Joined: Jul 2006

My 18 yr old daughter was just diagnosed with neuroendocrine carcinoma. They believe it started in her lung, mets to the liver, and 2 small spots on the brain. she just completed her first round of chemo...Carbo and Etopiside...start the second round on friday. I've never heard of this before...especially in a non smoking teenager. Any info you guys can share would be wonderful.

Thank You,
Linda

bella5
Posts: 2
Joined: Aug 2006

I hope your daughter is coming along well. My brother was diagnoised with neuroendocrine tumors in his liver of unknown primary. I too have not been able to find much information on this. My brother is 49. Please let me know any info you've received. My thoughts and prayers are with you and your family.
Bella5

mom101
Posts: 9
Joined: Jul 2006

Hi Bella, we really dont know anything new at the moment, waiting on a call to go to Princess Margaret Hospital in Toronto for further testing and a second opinion. She just had her 3 rd round of chemo...lung tumor shrunk 25% in each of the first two rounds so far. She feels great, chemo doesnt even make her sick for more than one day a session. One day at a time...I cant think farther without going crazy. She's doing great right now, and we're enjoying being together more. I'm sorry about your brother, how are things going with him?

bella5
Posts: 2
Joined: Aug 2006

Dear mom101, I'm glad to hear your daughter is responding to the chemo. After two rounds of chemo my brothers ct scan showed no response, an increase in size of the tumors. On monday he'll begin a different chemo. We're holding on to hope that this treatment will work. We're awaiting DNA results of his tumor to see if they can determine where the cancer originated from so that they can prescribe the proper chemo. I guess this is the way it works when you can't find a primary site. We'll just have to wait and pray. I look forward to hearing of your daughters continued progress. I will include you and your family in my prayers.

mom101
Posts: 9
Joined: Jul 2006

Ty Bella, you and your family are in my prayers also. Still no word on going to Toronto yet, we see our doc here on Tues the 5th, and I'm really going to push it hard with him then. Also going for genetic testing ..on the 6th. Done the 3rd round of chemo now..on the 5th we'll get the results. *keeping fingers crossed HARD* Have you been able to get any news? A Primary? what type of chemo are they giving him now? Does he have any mets other than the liver bella?

higgins1219
Posts: 3
Joined: Sep 2010

How is everyone doing? Can you give me updates on your loved ones and yourself? My mom was dianosed with this awful cancer about a year ago. We are very anxious about her upcoming PET scan the first week of October. She has already received Chemo and Radiation. She had a great response to chemo. She only had one spot on her throat that they radiated. The PET scan in October will tell us if she has anymore spots.

I would like to know how everyone is doing after reading your posts.

suenj8
Posts: 3
Joined: Nov 2009

Keep up the hope! I was Stage IV at diagnosis with mets to liver, spine and lymphnodes. Cancer was found in a routine colonoscopy when I was 53. Biopsy indicated Adenocarcinoma and I was treated with Folfox and Avastin. Mixed results 5 months into this chemo and the onc switched me to Folfiri. Everything shrank and we agreed I should have surgery. In surgery they found what had spread was the neuroendocrine carcinoma. The wonder drug for me is CPT-11 (part of the Folfiri cocktail. After surgery was healed had a round of Cisplatin and CPT-11 fall of 2008. December 2008 PET scan found no cancer. Since then I have had CT scans and blood tests as ordered by my onc and scans reamain the same. I feel very lucky! Neuropathy is only minor complaint.

The CEA tests never worked for me as my scores were always normal. My onc has told me he has another patient with nc of the uterus, discovered while she was pregnant - and she is also fine 3 years later.

Hugs for all dealing with this disease.

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