Neuroendocrine Carcinoma

Mary B

jports1049 said:

Here for my mom
Hi everybody, My mother was recently diagnosed with neuroendocrine cancer that primarily showed up in her colon. It has spread throughout her liver and there are two lesions on her lung as well. She is starting Chemo today. She has had the original tumor in her colon removed - it was 8 inches! The liver is inoperable, according to our doctor. She is currently seeing a doctor at the Leever Center in waterbury, ct, but we are also getting a second opinion through Dana Farber in Boston. We also will be working with a nutritionist too.

I am wondering if anybody knows of any educational resources about this type of cancer. I am having a hard time finding a lot of information on it. I would like to do my research to make sure we have all of our bases covered. Any advice would be great.

Neuroendocrine Carcinoma colon any advice on drs in SoCal
My sister was diagnosed yesterday with Neuroendocrine Carcinoma found in the colon and we are trying to hit the ground running on where she should go. We live in Southern California and at first thought UCLA, then a friend has really recommended USC Norris Center with Doctors Josef Lenz and Dr. Robert W. Beart. Has anyone had any experience with these doctors or UCLA?
My sister is the heart and soul of our large family and we are going to fight for every extra day she can get, and we know that it often starts with the right medical team. Any ideas would be so appreciated.

klisesr

Mary B said:

Neuroendocrine Carcinoma colon any advice on drs in SoCal
My sister was diagnosed yesterday with Neuroendocrine Carcinoma found in the colon and we are trying to hit the ground running on where she should go. We live in Southern California and at first thought UCLA, then a friend has really recommended USC Norris Center with Doctors Josef Lenz and Dr. Robert W. Beart. Has anyone had any experience with these doctors or UCLA?
My sister is the heart and soul of our large family and we are going to fight for every extra day she can get, and we know that it often starts with the right medical team. Any ideas would be so appreciated.

Drs. in SoCal
Check out the carcinoid.com or caringforcarcinoid.com websites. They list specialists who treat patients with neuroendocrine cancers by state.

Theonlylucky1

tebolt said:

newly diagnosed
I just found out five weeks ago that I have three lymph nodes affected and multiple lesions on my liver. I started out with a Dr. that didn't seem to know anything about my cancer. He said it was inoperable, fast growing - probably six to nine months - and would start aggressive chemo in three days. A doctor friend of mine wanted me to get a second opinion with Dr. Wolin at Cedar Sinai in Los Angeles. Wow what a difference. After going over my CT scans and PET scan with the radiologist he came back in the room and told me everything I had been told was wrong. The doctor told me I had had it at least six to nine years. I will be operated on next week. They are still trying to find the primary but feel it is in my small intestine. So I'm having an endoscopy Tues. It is a team approach at Cedars but I feel so much better after finding someone who specializes in this type of cancer. He told me the chemo the other dr was going to put me on would not have helped - I would have been sick and bald with no positive results. They plan on using radiation and whatever else it takes during the surgery. Sandostatin came up and they said I will end up managing this cancer for the rest of my life - which would be years and years - so they said.
My email is tebolt50@yahoo.com.

Newly Diagnosed
My partner Joseph was just diagnosed with Poorly diff high grade neuroendocrine CA (small cell CA0, anorectal area) With multiple hyopdensities throughout the liver and was giving 6 months to a year live and maybe 5 years with chemo. We are headed to Seattle Cancer Care Allince on May 2 for our second opinion. If anyone can help with this please email me. Johnsonsdragon1@yahoo.com

Theres not much research out there for this type of cancer.

Thanks so much for any help.
Robert

klisesr

Theonlylucky1 said:

Newly Diagnosed
My partner Joseph was just diagnosed with Poorly diff high grade neuroendocrine CA (small cell CA0, anorectal area) With multiple hyopdensities throughout the liver and was giving 6 months to a year live and maybe 5 years with chemo. We are headed to Seattle Cancer Care Allince on May 2 for our second opinion. If anyone can help with this please email me. Johnsonsdragon1@yahoo.com

Theres not much research out there for this type of cancer.

Thanks so much for any help.
Robert

Newly diagnosed
Robert - Don't get too discouraged. A lot of folks with neuroendocrine tumors have been given similar news. The key is to go to an expert. I'm not indicating that Seattle Cancer Care Alliance won't have appropriate experts, but in my search for expert physicians, I ended up NOT going to Seattle. I went to Dr. Rodney Pommier, oncolytic surgeon, in Portland at OHSU. He is a wonderful physician - very caring, specializes in treating neuorendocrine patients, and will encourage surgery if it is at all possible - as this is the best treatment option in many instances for patients with neuroendocrine tumors.

Best wishes -
Suzanne

kelleym2003

Mary B said:

Neuroendocrine Carcinoma colon any advice on drs in SoCal
My sister was diagnosed yesterday with Neuroendocrine Carcinoma found in the colon and we are trying to hit the ground running on where she should go. We live in Southern California and at first thought UCLA, then a friend has really recommended USC Norris Center with Doctors Josef Lenz and Dr. Robert W. Beart. Has anyone had any experience with these doctors or UCLA?
My sister is the heart and soul of our large family and we are going to fight for every extra day she can get, and we know that it often starts with the right medical team. Any ideas would be so appreciated.

so cal experts
Hi Mary
Just saw your post I know it has been a few months, Dr Ed Wolin at Cedars Sinai is the expert for Neuroendocrine Cancers and is avail for 2nd opinions for most insurances.
Good luck prayers
Kelley

kimrus1

lawelle said:

University of Chicago
Hello Lauren,
My name is Lisa my younger brother, he will be 31 this month, was recently diagnosed with neuroendocrine carcinom and is starting his third round of chemo tomorrow, etoposide and cisplatin. We have seen two doctors at Edwards Hospital in Naperville, IL and need to find other places to get additional opinions. He was given 6 months to 2 years. Who have you seen at University of Chicago and what have been the results. I hope your son is doing well. I too am praying everyday.

Neuroendocrine Carcinoma
HI Lauren,

My 34 year old son has recently been diagnosed with neuroendocrine carcinoma of the lungs. He never smoked a cigarette in his life. We finally have him being treated at Robert Lurie Cancer Center at Northwestern University. He is receiving his 2nd round of chemo, cisplatin and etoposide as well. I am wondering waht area your brothers cancer is in and how he is doing.Please let me know.

katbalou

Evans7634 said:

Just told she has neuroendocrine tumor
My 78 year old mom was told she has this cancer. She found it in her breast. She had breast cancer 15 years ago and we thought it was Inflamtory Breast cancer because of what it looked like. But with the results of a core biospy and reading the PET scan we found out it didn't spread on other organs and what cancer it really is.It is 8mm big and in the lymp nodes.She is a level 3. Since it is so rare I hope they know what they are doing. We are going to Jefferson Hospital in PA. And she starts Chemo and radition in one week. Three days straight and three weeks off. Can you tell me what they used on you?

neuroendocrine breast cancer
I'm new to this web site. Just found your comments. Wonder how your Mom is now. 5 years ago I was diagnosed with small neuroendocrine cancer, primary site in the breast. I had modified radical mastectomy, cisplatin/etoposide and then radiation. I am alive and well and cancer free. I was told I was going to die. Obviously I did not die. I think they are finding that the breast is less vascular so the cancer does not spread as readily as from other cites.

Phchance

katbalou said:

neuroendocrine breast cancer
I'm new to this web site. Just found your comments. Wonder how your Mom is now. 5 years ago I was diagnosed with small neuroendocrine cancer, primary site in the breast. I had modified radical mastectomy, cisplatin/etoposide and then radiation. I am alive and well and cancer free. I was told I was going to die. Obviously I did not die. I think they are finding that the breast is less vascular so the cancer does not spread as readily as from other cites.

Neuroendocrine breast cancer
I am new to this site also. Last year the doctors found a neuroendocrine tumor in my breast also. The breast also was the primary site. I also had cushing's syndrome because of the tumor. I also had a mastectomy but no chemo or radiation. My doctor did not think chemo or radiation would help. I got a second opinion from a specialist at cedar-Sinai and he agreed with my doctor. I have had a PET scan again and am cancer free. I just worry about reoccurrence. It's comforting to see someone with same diagnosis be 5 years cancer free. My doctors kept telling me they had never seen a case like mine. Glad to here your doing well.

Phchance

kelleym2003 said:

so cal experts
Hi Mary
Just saw your post I know it has been a few months, Dr Ed Wolin at Cedars Sinai is the expert for Neuroendocrine Cancers and is avail for 2nd opinions for most insurances.
Good luck prayers
Kelley

Hi Mary. I just joined and
Hi Mary. I just joined and seen your post. I saw dr Wolin at cedar-Sinai and he was very helpful & knowledgable. He's an expert in the field. I had a HMO insurance and they covered it. Feel free to message me if you have ???'s. Just FYI my tumor was in breast

cmcder6493

maynard said:

Not alone
I was diagnosed 12/22 with NEC of the colon, multiple liver sites, lympodes, and both lungs. I was doing fine one day and my side hurting the next and unable to breathe. i don't know what to tell you. They gave me maybe 4 months w/o treatment and 8 with. According to Jackson doctor, it is inoperatable and incurable. My is fast acting large cell cyokeratin 8/18. I am going to Vanderbilt this week and trying to get into M D Anderson.It is up to our Lord God to decide when it is mine time.

Not Alone
Hi I just wanted to know how you are doing. My 21 year old son was diagnosed with NEC in Auguast 2008

sinkorswim

Monawolf said:

I also have been diagnosed with Neuroendocrine Carcinoma in my liver, lungs and brain. I have had only brain radiation. My oncologist has chosen not to treat lungs and liver until I have symptoms. Does anyone have a similiar situation?

Metastatic Neuroendocrine Carcinoma
Hi Monawolf,

I know it's six years later since you've posted but I just recently found the ACS survivor network webpage. I was originally diagnosed on my 18th birthday in Dec of 2003, my primary tumor was in the Thymus. I went through Cisplatin and VP-16 chemotherapy for a few months and then had my first surgery. A year went by and it spread to the surrounding ribs and lymph nodes so I had a second surgery. Then I did radiation in the chest from Oct-Dec of 2005. My local oncologist gave up on me and sent me home to get 'comfortable'. Luckily a neighbor works in cancer research and hooked me up with Dr. James Yao a Carcinoid specialist at MD Anderson Cancer Center in Houston, Tx. We watched for a year and as it spread to lungs and diaghram I began oral chemotherapy with Temodar. I took it for a year and everything remained stable. Then in December of 2010 I had a sinus surgery and the surgeon found a mass in my nasal passage. We did a head MRI and found a large tumor at the base of the skull that spread to the sinuses as well. I moved to Houston in Oct of 2010 and did Proton Therapy. All the tumors below the neck: lungs, diaghram, ribs, hips and spine had been stable since 2007 till this August I began having pain, numbness and tingling down my right arm. We found a small new tumor near my cervical spine so I just started radiation again. I was put back on Temodar as of this February. The tumor was able to grow while on the chemo so they've decided that I'm no longer responsive. My doctor is trying to get me approved for Avastin and I've tried Affinitor but got really sick from it.

Where has your dx taken you? Anyone else have more information on treatment options? I was just told about the genetic profiling testing.

Thanks so much!
Meghan

ashortwalk

Theonlylucky1 said:

Newly Diagnosed
My partner Joseph was just diagnosed with Poorly diff high grade neuroendocrine CA (small cell CA0, anorectal area) With multiple hyopdensities throughout the liver and was giving 6 months to a year live and maybe 5 years with chemo. We are headed to Seattle Cancer Care Allince on May 2 for our second opinion. If anyone can help with this please email me. Johnsonsdragon1@yahoo.com

Theres not much research out there for this type of cancer.

Thanks so much for any help.
Robert

neuro endocrine in the rectum
diagnosed in Sept. 2011, surgery at the Univ. of Ala Hosp. Oct.5, 2011.
1st round of chemo Oct. 31, 2011. next chemo sch. for Nov.30. going to start radiation next week for 5 weeks of that. doctors say got all cancer, and i must to chemo with radiation so it want come back, said if it comes back it is a monster.
how are u and joseph?

BellaSusie

carcinoid new
Just found out recently that I have a carcinoid in my face. I'm really new to all this! I'm not sure how this site works either. The area where I live played with my life since Feb of this year. Then I went to what I thought was the best cancer center in this area, boy was I fooled. If everyone will just bear with me while I learn how to work this site.

BellaSusie

BellaSusie said:

carcinoid new
Just found out recently that I have a carcinoid in my face. I'm really new to all this! I'm not sure how this site works either. The area where I live played with my life since Feb of this year. Then I went to what I thought was the best cancer center in this area, boy was I fooled. If everyone will just bear with me while I learn how to work this site.

carcinoid new
Does anyone on here live in PA around Lancaster PA?

Thanxs BellaSusie

Prospector

sinkorswim said:

Metastatic Neuroendocrine Carcinoma
Hi Monawolf,

I know it's six years later since you've posted but I just recently found the ACS survivor network webpage. I was originally diagnosed on my 18th birthday in Dec of 2003, my primary tumor was in the Thymus. I went through Cisplatin and VP-16 chemotherapy for a few months and then had my first surgery. A year went by and it spread to the surrounding ribs and lymph nodes so I had a second surgery. Then I did radiation in the chest from Oct-Dec of 2005. My local oncologist gave up on me and sent me home to get 'comfortable'. Luckily a neighbor works in cancer research and hooked me up with Dr. James Yao a Carcinoid specialist at MD Anderson Cancer Center in Houston, Tx. We watched for a year and as it spread to lungs and diaghram I began oral chemotherapy with Temodar. I took it for a year and everything remained stable. Then in December of 2010 I had a sinus surgery and the surgeon found a mass in my nasal passage. We did a head MRI and found a large tumor at the base of the skull that spread to the sinuses as well. I moved to Houston in Oct of 2010 and did Proton Therapy. All the tumors below the neck: lungs, diaghram, ribs, hips and spine had been stable since 2007 till this August I began having pain, numbness and tingling down my right arm. We found a small new tumor near my cervical spine so I just started radiation again. I was put back on Temodar as of this February. The tumor was able to grow while on the chemo so they've decided that I'm no longer responsive. My doctor is trying to get me approved for Avastin and I've tried Affinitor but got really sick from it.

Where has your dx taken you? Anyone else have more information on treatment options? I was just told about the genetic profiling testing.

Thanks so much!
Meghan

NET
Meghan,
Have you researched PRRT treatments? PRRTinfo.org

concernedDIL

sinkorswim said:

Metastatic Neuroendocrine Carcinoma
Hi Monawolf,

I know it's six years later since you've posted but I just recently found the ACS survivor network webpage. I was originally diagnosed on my 18th birthday in Dec of 2003, my primary tumor was in the Thymus. I went through Cisplatin and VP-16 chemotherapy for a few months and then had my first surgery. A year went by and it spread to the surrounding ribs and lymph nodes so I had a second surgery. Then I did radiation in the chest from Oct-Dec of 2005. My local oncologist gave up on me and sent me home to get 'comfortable'. Luckily a neighbor works in cancer research and hooked me up with Dr. James Yao a Carcinoid specialist at MD Anderson Cancer Center in Houston, Tx. We watched for a year and as it spread to lungs and diaghram I began oral chemotherapy with Temodar. I took it for a year and everything remained stable. Then in December of 2010 I had a sinus surgery and the surgeon found a mass in my nasal passage. We did a head MRI and found a large tumor at the base of the skull that spread to the sinuses as well. I moved to Houston in Oct of 2010 and did Proton Therapy. All the tumors below the neck: lungs, diaghram, ribs, hips and spine had been stable since 2007 till this August I began having pain, numbness and tingling down my right arm. We found a small new tumor near my cervical spine so I just started radiation again. I was put back on Temodar as of this February. The tumor was able to grow while on the chemo so they've decided that I'm no longer responsive. My doctor is trying to get me approved for Avastin and I've tried Affinitor but got really sick from it.

Where has your dx taken you? Anyone else have more information on treatment options? I was just told about the genetic profiling testing.

Thanks so much!
Meghan

Hi Meghan,
Do you know if
Hi Meghan,

Do you know if your cancer is small cell or large cell type? My mother in law was diagnosed with small cell neuroendocrine carcinoma in her esophagus and liver and we were all thinking that her days are numbered. Your story makes me feel hopeful!

Thanks for your reply.

Amy

benhaynes92

Hi Chris, not sure if you
Hi Chris, not sure if you are still using this blog.

My name is Ben Haynes and I am from Nottingham in the UK. Two years ago my Mum was diagnosed with Neuroendocrine cancer. I am still learning all what I can about this particular cancer and it is so hard to keep up with the consultants who are consistently telling you different things. As I understand it, it is a hormonal cancer, however she had a slow growing tumor in her large bowel that was removed in 2009. The bowel was removed successfully and replaced by a colostomy bag.

My Mum is currently having Lanreotide treating so as to stop the cancer from growing any more. This seemed to have worked for some time but we have just been told that a second tumor is growing in the liver. She is on the highest dosage of the Lanreotide and she takes the injection every 3 weeks.

She has also been carrying an infection that developed from her first operation (removing the bowel) and the doctors are now saying that they are unable to operate in fear that the infection will grow and spread. She is also very thin and wouldn't be able to tolerate another operation. The consultant also said the Chemo would not be an option as her immune system is not strong enough.

Its so far been a very strange journey and I can't even begin to understand how my Mum is feeling, or anyone else suffering with cancer for that matter. I am 19 and currently doing my degree in music performance whilst doing my best to stand by my Mum.

tinelaking

benhaynes92 said:

Hi Chris, not sure if you
Hi Chris, not sure if you are still using this blog.

My name is Ben Haynes and I am from Nottingham in the UK. Two years ago my Mum was diagnosed with Neuroendocrine cancer. I am still learning all what I can about this particular cancer and it is so hard to keep up with the consultants who are consistently telling you different things. As I understand it, it is a hormonal cancer, however she had a slow growing tumor in her large bowel that was removed in 2009. The bowel was removed successfully and replaced by a colostomy bag.

My Mum is currently having Lanreotide treating so as to stop the cancer from growing any more. This seemed to have worked for some time but we have just been told that a second tumor is growing in the liver. She is on the highest dosage of the Lanreotide and she takes the injection every 3 weeks.

She has also been carrying an infection that developed from her first operation (removing the bowel) and the doctors are now saying that they are unable to operate in fear that the infection will grow and spread. She is also very thin and wouldn't be able to tolerate another operation. The consultant also said the Chemo would not be an option as her immune system is not strong enough.

Its so far been a very strange journey and I can't even begin to understand how my Mum is feeling, or anyone else suffering with cancer for that matter. I am 19 and currently doing my degree in music performance whilst doing my best to stand by my Mum.

benhaynes92
Hi Ben I was diagnosed 2010 with a tumour in my bowel have since found tumours in my liver and more lymph nodes. They havent suggested any surgery so far which I am not too sure about but hey say my tumours arent growing so no need to make my quality of life any worse. I really dont ewant to have chemo as it is like having a demolishing ball inside your bodybut if it does come to that I will obviously prefer to try and save my life!! In the mean time I am taking Turmeric...I know I know it sounds wacky but check out the recent discoveries about its effects on cancer tumours my thinking it wont harm so Im giving it a try cant be any worse than chemo!
Im sure your Mum is helped just having you arround caring so much , I wish yu all the best especially in your studies.

GJ100

jeffrey89 said:

NeuroEndrocrine tumor
Hello ...
My father, age 82 was just diagnosed with primary lesion into his pancreas and METS to numerous lesions in his liver.
So far he is being treated with Sandostatin injections and Afinitor chemo pills...he is tolerating both well for now. Actually too soon to know on the Afinitor.
How is your mother and what course of treatment is she still undergoing?
Sincerely -
Jeffrey

Neuroendocrine tumor
Hi Jeffrey,

My husband was diagnosed with a neuroendocrine tumor in September 2010. They have not been able to ascertain the site of the primary tumor but there are considerable METS in his liver. He has been taking Sandostatin injections which were, initially, effective in controlling the diarrhea that is associated with this disease. But, after 14 months, during which time both the dosage and the frequency of administration were increased the diarrhea has returned. As a result of your post we are going to look into the possibility of including Afinitor in his regimen. Thanks!

GJ

mr steve

GJ100 said:

Neuroendocrine tumor
Hi Jeffrey,

My husband was diagnosed with a neuroendocrine tumor in September 2010. They have not been able to ascertain the site of the primary tumor but there are considerable METS in his liver. He has been taking Sandostatin injections which were, initially, effective in controlling the diarrhea that is associated with this disease. But, after 14 months, during which time both the dosage and the frequency of administration were increased the diarrhea has returned. As a result of your post we are going to look into the possibility of including Afinitor in his regimen. Thanks!

GJ

Afinitor
GJ,

Wife has been on afinitor and avastin for the past 5 months. the diarrhea is even worse than with just the tumor itself. she takes sandostitin lar once a month and the short acting upto 8 times a day takes fiber tablets, opium, creon caps, just to try and keep it under control. The afintor seems to be working the tumors have shrunk almost 25%. She was first dx in 2008.

Steve