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Neuroendocrine Carcinoma

mjlueck
Posts: 3
Joined: Sep 2007

Hi! I am new to this board and am joining because I'm not sure where to go, and I'm hoping someone here can relate to what I'm going through. Two years ago I had a gallbladder attack and upon ultrasound, a large mass was found in my abdomen. I had a biopsy done, and it was diagnosed as cancer. I then had a CT scan and it was diagnosed as Focal Nodular Hyperplasia, a benign liver tumor, due to a central scar they saw on the CT scan that is normal on an FNH tumor. I did not have surgery to remove it at that time because I was pregnant. Once I had the baby and was done nursing him, I had surgery to remove this tumor. It was 10cm in diameter and upon dissection was found to be a neuroendocrine carcinoma. It was connected to my liver by a stalk, so none of my liver had to be removed. I had bloodwork done 3 weeks post op and my tumor markers were still high, so I just had more markers done yesterday and won't know the results until later next week. My question is, how do they know if this is the primary site or if it is elsewhere? I am so confused! If my markers aren't within normal range I then need to have further testing done to see if they can find more tumors in my digestive tract, since the CT scan showed nothing, but doesn't detect anything smaller than 1cm. And at what point post-op should the tumor markers be back to normal if there are no other tumors present?

Felton
Posts: 2
Joined: Sep 2007

Hi Mjlueck- I have Neuroendocrine Pancreatic cancer. I had several years of stomach pain and it was finally determined I needed to have my gall bladder removed. Two weeks after surgery I still was having pain and a CT scan showed a large tumor on my pancreas. Several more tests were done and they found out it spread to my liver and lymph nodes. A biospy on the pancreas and liver determined that the primary was the pancreas because the lesions on my liver were the same cancer as the pancreas.I have been doing chemo since last December and had major surgery in March. The chemo drugs are working. I've discovered that there is not a lot of information about my cancer because it is very rare, so I rely on my doctor for answers. In the beginning my husband and I went to the doctor with a long list of questions. It helped to relieve our fears. You may want to make an appt with your doctor and ask as many questions as you can to help you understand and relieve some of the tremendous stress you are going through. I hope for a good outcome of your tests. Let us know how you are doing. Every day is a challenge.

mjlueck
Posts: 3
Joined: Sep 2007

Hi! Thank you so much for your response! I plan to get all my questions together, and am actually seeking out a doctor in my state that specializes in these types of tumors. I haven't seen an Oncologist yet, only the surgeon that removed my tumor, and I don't feel that she's very educated in this area, so it's time to find someone that is!! The things I've read on the internet about this type of cancer look very grim, and I'm only 29 and have two young children and don't want to succumb to this cancer - I'd rather fight it! I'm scared of the outcome but I think I just need to make an appointment with this Oncologist I found and get the answers I've been searching for. Thank you for your reply and good luck to you!

AlisaD's picture
AlisaD
Posts: 2
Joined: Nov 2007

hello to both of you. I don't know if you will check back in here, but I am looking for more people and hopefully more surivors of 'our' cancer. As you said, it is rare and I have yet to talk to someone who has had it. My neuroendocrine tumor was on my cervix, so I had the whole cervix, uterus, ovaries etc. all removed. Two lymph nodes were involved so they were removed along with 50 others that were clear. Scans show that there is no 'visible' cancer, but because this is so rare and agressive they want to obliterate it, so I am doing 6 rounds of intense chemo (3 full days on, 18 days off) then radiation. I am also following an organic diet and eating a lot of raw vegetables and taking various supplements, acai berry smoothies etc. to help my system tolerate the chemo and I hope to create an oxygen friendly environment in my blood which supposedly inhibits cancer cell growth. I too have a young child and am desperate to survive this. My prayer is that it doesn't recur anywhere else, as these are the statistics that I've read. I try not to get too freaked out by them. There are survivors out there, I just haven't found them. I hope that we become three of them! If you check back, please let me know how you are doing now. Love & Light!

lgirardin
Posts: 1
Joined: Apr 2007

Hello,
I was diagnosed with a neuroendocrine carcinoid tumor in my pancreas with mets to my liver in Jan. of 2006. I had surgery in May of 2006 to remove the tumor in the pancreas along with my gallbladder, spleen, lymph nodes, appendix and several tumors in my liver. In March of 2007 a Octreotide Scan showed two new tumors in my liver. In June of 2007 I had Radio Frequency Ablation done on one of the tumors in my liver, the other one was too small for RFA. In Feb. 2008 I will have another Octreotide scan to check for new tumors and changes in the one left in my liver. If possible I will have Radio Frequency Ablation done again. I do not have any carcinoid symptoms at this time. I see my oncologist about every three months for blood work. I too try not to get too freaked out about the statistics. I find that yoga and meditation helps me live with cancer in a more positive way. Take care.

mr steve
Posts: 286
Joined: Sep 2009

My wife has mets to the ovaries (prime was pancrease with mets to the liver) and we have surgery next week just wondering if you still check this site and how you are progressing?

Steve

lopezea1
Posts: 1
Joined: Dec 2011

I was found to have Neuroendocrine Carcinoma in 1998. They found it on the tail end of my pancreas, it was the size of a coke can. You said you where looking for survivors, I want you to know there are some. I never got chemo or rad treatment. I now have diabetes but other then that I'm doing well. They just found tumors on my uterus and I will be going under surgery to remove them. We do not know if it has returned yet. There is hope and there are survivors out there.

swaustin1403
Posts: 1
Joined: Mar 2012

Hello! I wanted to encourage you if you still check posts on this site. I was diagnosed with a neuroendocrine carcinoma in my colon which moved to my lymph nodes in my left shoulder in1997. I had surgeries, chemo, radiation and lots of prayer!! I am still here; 15 years later and doing well. Remember that "Google" doesn't know EVERYTHING! :) I hope you and anyone else whose read this is encouraged! Hang in there!

joann p
Posts: 50
Joined: Apr 2012

Hi,
This sounds like the same as my husband's cancer.Started in colon, which was removed, several lymph nodes. left supraclavicular node, 4 in liver, but it is small cell poorely differentiated Ca. What was yours??? Your post made me feel so much better. After 1 round, there shows some shrinkage of some of the tumors. Please keep in touch!!!
Jo-Ann

blpm72
Posts: 6
Joined: Jun 2009

Hi. I am new to all of this. My 66 yr old mother was recently diagnosed with neuroendocrine carcinoma on the pancreas that has spread to the liver. We have discovered as well that there is limited information available because this cancer is so rare. Our first oncologist recommended chemotherapy, but we have heard it is quite toxic. Our second opinion, we went to Loyola Medical Center in the Chicago area and they said there is nothing they can do with the pancreas tumor because it is too large, but they are going to do the embolization procedure on the liver to begin shrinking/stopping the tumors. The pancreas tumor they said, could be reduced with chemo but again they say it is so toxic. In addition, the tumor on the pancreas is quite large. They estimate my mom has had the tumors for at least 5 years and only now, symptoms such as fatigue, diaherra and pain have come into play. Any words of "advice" would be appreciated.

NETsurvivor's picture
NETsurvivor
Posts: 16
Joined: Oct 2008

I have had several chemo treatments for my poorly differentiated neuroendocrine pancreatic cancer. I have metastasis to my liver and spleen. I did not have many side effects with the chemo that I recieved. I am surprised that you are being advised that it is too toxic. I was diagnosed in February of 2007. The chemo treatments have kept my tumors from growing and killed areas of the tumor. I consider the them effective in my case. I also am on an oral medication since May of 2008 that initially shrunk my liver tumors and has kept me stable. Feel free to contact me if you want more information on either chemo or the oral drug.

marius_sym
Posts: 2
Joined: Jun 2011

Hello! My father had last year neuroendocrine gastric cancer,poorly differentiated. He had a surgery and made chemo with cisplatic+etoposide. Now,after 14 months it seems that he has a tumour at his pancreas(head of pancreas) of 6 cm. Can you help me with the kind of chemo you did please? Or maybe other medicaments? Thanks!

mr steve
Posts: 286
Joined: Sep 2009

xeloda, temador, sandostatin lar, afinitor, avastin.

marius_sym
Posts: 2
Joined: Jun 2011

What is the prognosis in the neuroendocrine poorly differential pancreas cancer? Can you helf me with some links please?

Fatherof3
Posts: 3
Joined: Jan 2012

Hello. I hope that you and your wife are both doing well. My father was recently diagnosed with the above Cancer. I wanted to see if you could assist me with some of the questions that I have about his treatment. Thanks in Advance!

Fatherof3
Posts: 3
Joined: Jan 2012

Hello! I hope that you are doing well. I am new to this site. My father was recently diagnosed with the above Cancer. If you don't mind, I have many questions about his current treatments.

mr steve
Posts: 286
Joined: Sep 2009

If you don't have questions then your doing pretty well. Make sure you find a onc. who has worked with this type cancer...

Teekie
Posts: 2
Joined: Sep 2012

Hi! My husband was recently diagnosed with large cell neuroendocrine carcinoma metastasized to liver & lymph nodes. He is currently on chemotherapy with carboplatin and etoposide just finished his fifth treatment last week. The first three treatments went great. CT Scan after 3rd treatment showed everything shrinking. He was in ER over weekend thought it was a gallbladder attack. CT Scan showed liver masses have increased in size from scan after the 3rd treatment. Dr. Is going to change his chemo drugs for his next treatment. Wanted to know what oral medication you took and what chemo drugs you had. Thanks so much.

T

joann p
Posts: 50
Joined: Apr 2012

Teekie,
My name is Jo-Ann and my husband Frank was diagnosed with samll cell poorly differentiated neuroendocinre cancer thatmost probably started in the colon with several lessionsint he oive and multiple lymph nodes. As with your husband, the tumor went down in size, then after his 6th session, the repeat CT scan showed that the tumores returned to the original pre chemo size, but the good part was that no other sites were seen. He was treated with VP16 and Cisplatin. This Fri he will start a new chemo regime of Irinotecan, a drug that is used to inhibit DNA reproduction of the cancer cell.You are not alone in this. Snooze is going thru the same thing as both of our husbands are. I look at it this way, they are still treating it, didn't say they couldn't. I think that my husband will probably have 5n more months of chemo. It sucks, but hey, he's still here. If you would like to chat, my e-mail is nrz83@aol.com
Prayers to you,
Jo-Ann

bowk61
Posts: 9
Joined: Sep 2012

Teekie, hello. My name is Steve and I have a neuroendocrine tumor on my pancreas with liasions on my liver and 2 enlarged lymphnodes between my lungs. Have been on temodar an oral med for 1 month now, 7 days on and 7 days off. No results yet for effectiveness. Will probably know more in a month or 2.

Teekie
Posts: 2
Joined: Sep 2012

Hi! My husband has been diagnosed with large cell neuroendocrine carcinoma. I was wondering what chemo drugs and oral medication helped you. Thanks!

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

Hi there!

I saw your post and would like to invite you to read my page under "Jennifer's Story" You can contact me if you have any questions and I would be glad to help.

Good luck,

Jen

ajbf
Posts: 28
Joined: May 2008

my husband had a neuroendocrine at the tail of his pancreas , he had a distal pancreatectomy and splenectomy, he did ca-19-9 april and may it came back both times 98 high ,in may they also did a ct and they found a 7mm lision on his liver they said they were lucky to see it. becuse the ca 19-9 was high they were looking for it. he is now going to do a octreotide.

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