Neuroendocrine Carcinoma

yes ma'am
Please tell me more. I was told in 2009 Ihad small cell neuroendrocine carcinoma

Pancreatic neuroendocrine Tumour metastatized to all lymph nodes
I am 25 years old Dentist from Egypt,I was recently diagnosed with pancreatic neuroendocrine tumour of Pancreas,The Mass measures about 7 X 5 cm in both body and tail of pancreas.the tomour cells metastatized to all body lymph nodes but no bone or other organs involvement.
I just want to ask about if there is any oncology center in any place in the world is specialized in this type so I can go there.because the health care system is very bad here in Egypt.

survival wisher said:

Pancreatic neuroendocrine Tumour metastatized to all lymph nodes
I am 25 years old Dentist from Egypt,I was recently diagnosed with pancreatic neuroendocrine tumour of Pancreas,The Mass measures about 7 X 5 cm in both body and tail of pancreas.the tomour cells metastatized to all body lymph nodes but no bone or other organs involvement.
I just want to ask about if there is any oncology center in any place in the world is specialized in this type so I can go there.because the health care system is very bad here in Egypt.

Diagnosed with
Diagnosed with neuroendocrine samatostatin pancreatic tumor March of 2012. Going to Dana Farber Cancer Istitute in Boston, MA. Finishing my 2nd week of a chemo pill (7days on 7 days off). Many different types of treatments for this type of cancer.

bowk61 said:

Diagnosed with
Diagnosed with neuroendocrine samatostatin pancreatic tumor March of 2012. Going to Dana Farber Cancer Istitute in Boston, MA. Finishing my 2nd week of a chemo pill (7days on 7 days off). Many different types of treatments for this type of cancer.

NET
Hello,
My husband was diagnosed with Neuroindocrine Carcinoma in May of 2011 after going in for a routine colonoscopy. He had a colon re-section and discovered mastastases to the liver. He had several treatments of chemo and PET showed no change. He then had the Sphere procedure done by Dr. Majorio in Baton Rouge. He was doing good after the procedure and scan showed tremendous improvement. However in May of 2012, another tumor was discovered in the thoracic spine and another surgery was done in an attempt to remover the mass. He is paralyzed now from the waist down. We are hopeful that he will walk again. Currently in therapy.

He is taking Xeloda, an oral chemo which seems to be working well. The tumors on the liver is getting smaller and his biggest problem now is the back issue. We are being cared for by the experts at the NET Clinic in Kenner, La, which we found by communicating with a NET survivor in Missouri, and Drs Billings and Fields at Mary Bird Perkins Cancer Center in Baton Rouge. My email address is msdavis50@yahoo.com.

p26274 said:

Just Diagnosed with Neuroendocrine Carcinoma Breast Location
I'm living in China and just got a diagnosis from the local international hospital that I have a neuroendocrine carcinoma tumor in my breast. I'm heading for the next set of tests today but will need to head back to the US (my home country) for treatment. Through my internet search it seems that Johns Hopkins, Cedars-Sinai and Mayo Clinic provide good options for me. I'm very interested in Mayo Clinic as I have family in Minnesota. Any recommendations for doctors in any of these locations?

Appreciate any feedback.

Just Diagnosed with Neuroendocrine Carcinoma Breast Location

just curious - what you decided on your treatment? did your treat go well?

My wife had neuroendocrine tumor in breast 2 years back. we went through chemo+ masactomy+ radition.

it returned back aggressively now - spread to liver, lung and bone. we are deeply worried and she is going through treatment.

I am wondering anybody out there know -

any advanced  (or NEW) treatment center for this kind of cancer?

or some people say - Europe/Swedan might have better treatment. But don't know any specific details.

just posting to see desperately- anybody has any better suggestion for this?

Annelis said:

My name is Anne. I was
My name is Anne. I was diagnosed in March 2012 with neuroendocrine breast carcinoma ,high grade. I am in the middle of 6 cycles of chemo now. After that a lumpectomy is to be scheduled. That will be followed by Afinitor.
I have had a terrible time finding anyone with a similar tumor. Please connect with me to let me know how you are doing!! Thanks in advance!!

neuroendocrine tumor on breast initially - now spread to many

how is your treatment going?

my wife neuroendocrine tumor in breast 2 years back. she went through chemo (ac+taxol)+ chemo+radition.

now it returned back aggressively in many orgons - liver, lung, and bone.

wondering how it is working for you? where are u located?

based on your research - any advanced treatment available anywhere in us or europe? please help to share any additional info you might have.

 

my email id: satamara@yahoo.com

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

neuroendocrine carcinoma high grade

Hello, my daughter age 34 while having a routine c section, they found a cancerous ovary...turned out to be neuroendocrine carcinoma high grade, started in the thymus, spread to other parts....etc....chemo....and brain radiation going on now.

It seems like you have been surviving with this cancer, do you have an update? We haven't found any survival beyond 5 years.

thanks,

Debbie

satamara said:

Just Diagnosed with Neuroendocrine Carcinoma Breast Location

just curious - what you decided on your treatment? did your treat go well?

My wife had neuroendocrine tumor in breast 2 years back. we went through chemo+ masactomy+ radition.

it returned back aggressively now - spread to liver, lung and bone. we are deeply worried and she is going through treatment.

I am wondering anybody out there know -

any advanced  (or NEW) treatment center for this kind of cancer?

or some people say - Europe/Swedan might have better treatment. But don't know any specific details.

just posting to see desperately- anybody has any better suggestion for this?

Treatment Sweden

http://www.akademiska.se/endocrinetumors/

I think you will find the information you need true the link above. The information is in English.

Phchance said:

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.

Primary Neuroendocrine tumour in Breast

Hi there,

I am a 47 yr old lady in UK I have had breast cancer twice in same breast (2007 and 2011) the last time I was diagnosed with a primary Neuroendocrine breast cancer 5.6 cm large, non cell specific , however grade 3 as you know is aggressive. I had mastectomy followed by 6 sessions of FEC Chemo 3 weeks apart then radiotherapy. I cannot find anyone in UK with this diagnosis and the medics cannot give me any information on prognosis. I would love to hear back from you or anyone who has been through this. I just need reassurance that I'm going to be ok and be around linfer than 5 years 

satamara said:

neuroendocrine tumor on breast - now spread to many orgons

hi,

thx for posting info.

how are doing?

I am trying to find out -

Dr. James Yao a Carcinoid specialist at MD Anderson Cancer.

we live in Dallas, Texas.

my wife tumor returned back after 2 yrs to many orgons - liver, lung and bone.

does Dr. James Yao specialize on neuroendocrine tumors?

anybody out there know - any specialist anywhere in USA or europe for neuroendocrine tumors?

somebody who is involved in heavy research and aggressively treat this kind of condition. Please help to post if you have any latest info.

my email id: satamara@yahoo.com.

 

neuroendocrine tumors

      I joined this when I first found out what my tumors were - 2 and 1/2 years later I am doing ok. The oncology group in the closest town in Bakersfield California didn't have a clue but decided to fight my tumors with aggressive chemo.  Said there was no use in surgery because my insides would look like "Swiss Cheese"  - didn't think that was very professional but I was scared to death so agreed to start the chemo the next Monday.  Thank goodness I have a friend that is a dr.  She called and told me not to do the chemo - that she wasn't an oncologist (teaching dr in a hospital) but that she could Google and she wanted me to see a Doctor Wolin at Cedars Sinai down in Los Angeles. 

Thank God for her advice. My whipple was done by Dr. Nicolas Nissan the transplant surgeon in Sept. 2010.  It was a rough surgery and recovery - 16 hr. surgery.  There were tumors in my pancreas, lymph nodes, stomach, intestines, appendix and the mother alien was in the ampulae avatar.  Glad they found and got rid of her but they couldn't get the dozens of sand sized baby ones in my liver.  Too small, too many and yes maybe it would look like chopped liver if they tried.  They took the ones they could see and were larger. 

The first oncologist said this was a very fast growing cancer and that I had had it probably six to nine months, only in my lymph nodes, but Dr. Wolin said it was probably more like six to nine years at least.  They still had no idea what caused this and the reason it was so rare was because no one ever looked for it.  If you can imagine the guy who originally noticed the tumors was the technician checking my heart with a scanner held in his hand.  I asked if he would look down below  my ribcage because my heart seemed to be beating there more than where it should have been.  He peeked and immediately told me I had to go back to the doctor who had just sent me to him.  He didn't say a word and didn't have to.  I ended up with a biopsy and thank goodness it came back as what it was. I thought I would be dead in six months but Dr. Wolin took all the tests and said he was going to the radiologist and when he came back we were going to make a plan.  And we did.

I have been on Sandostatin ever since the surgery, though I have so many it isn't as effective as it was.  Now I'm on a clinical trial with Sandostatin every three weeks and I give my self a very small shot of interferon Mon, Wed, and Fridays.  I have never lost my hair(all of it anyway - thinner with the interferon) or been made really sick (except right after the surgery).  The interferon makes me tired and kind of flu like, not bad, not compared to those with aggressive chemo.  Which Dr. Wolin said that that would have made me very sick, bald, and wouldn't have done a thing to the tumors.  That kind of chemo is for fast growing cancer and NETS are slow growing.  I don't know how much longer I have - Doc says when the interferon quits working (right now my liver toxins don't like it) we will go to the next thing.  He tells me I'm going to be around for a long time but inside I always wonder.  If you want to get hold of me I will gladly write you back.  tebolt50@yahoo.com  - I forgot a lot of things after the surgery.  Under too long - I forgot about this place but glad I found it today.  By the way this cancer is the only thing I ever had in common with Steve Jobs - too bad he didn't use some of his money to find a cure. 

Terry

P.S. The doctors are very worried about Obamacare.  I have my own insurance from where I worked and it has covered everything so far.