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Neuroendocrine Carcinoma

chrisaw's picture
chrisaw
Posts: 19
Joined: Nov 2002

Hello- just checking to see if anyone else has been living through this diagnosis. Would love to share experiences.
Chris
Neuroendocrine Carcinoma, Cervical l-2B

tv241st
Posts: 1
Joined: Jun 2003

Hey Chris, I was diagnosed about about a month ago. Originally diagnosed in April with Esthesioneuroblastoma. Had surgery in May. Pathology of tumor came back as poorly differentiated, high grade, neuroendocrine carcinoma. Will be starting radiation and chemo in about a week or so. How are you doing? Any advice for a newbie?

chrisaw's picture
chrisaw
Posts: 19
Joined: Nov 2002

Hey, TV- I emailed your box here, but just in case you haven't gotten that far, just wanted to let you know you can email me. Will be glad to help in any way. Where was your tumor? Has the cancer spread? Drop me a line.
Chris

cups368
Posts: 2
Joined: Sep 2009

Hi my name is Andrea and my husband was given the news 7weeks ago. It has spread to the liver. We are waiting to start chemo. It is low grade and well defferinated. (sorry about the spelling, learning a lot in a small time). They want to start a chemo pill but we are having problems with funding. Our co-pay is 1,200 a treatment. They are looking into charities and think we will qualify, but I want to start treatment. They think we need a round of 6 treatments, has any one else done the chemo pill?

mr steve
Posts: 286
Joined: Sep 2009

Have you gotten a 2ed opinion?

cups368
Posts: 2
Joined: Sep 2009

No we have not got another opinion. We are going to the best place in Ohio The James and we did get the money to cover the price of the chemo pills. We are on the first week and things are going pretty good, next week will be the bad one. Thanks for responding

mr steve
Posts: 286
Joined: Sep 2009

I was going to recommend The James. My wife has been getting treated there since 3-08. We will be going to have surgery again the first part of Oct. We have had nothing but wonderful care. The James was recommeded to us from our Charleston WV Oncologist.

mr steve
Posts: 286
Joined: Sep 2009

Andrea,

I hope you still check this site. My wifes surgery was canceled on Monday due to the cancer spreading. We are going to see a Dr. Shah in the next few weeks and I was wondering if this is the same Dr you and your husband are seeing? Have you started the "chemo pill"?

Steve

BreezySwede
Posts: 1
Joined: Dec 2009

I'm sorry to be replying so long after question. I didn't get the word that my Cisplatin/Etopocide IV's were not quite cleaning things up until after your post.I had lesions on my liver after having primary growth removed from my Colon in May 2009. In October I came to START Cancer Center, San Antonio, TX and November 3, 2009 started an experimental pill from Array in Colorado. I have had some rash and odd blood labs but am feeling good. Imagery indicates no new cancer growth since starting the study. The study is following eye health closely as some other patients have had reaction there. Pardon spelling.

Evans7634
Posts: 3
Joined: Jul 2010

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?

katbalou
Posts: 1
Joined: Aug 2011

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
Posts: 2
Joined: Aug 2011

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.

monkabell66's picture
monkabell66
Posts: 3
Joined: May 2012

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 

Steviekae
Posts: 2
Joined: Apr 2012

I am so happy to hear you are alive and doing well. I was diagnosed with neuroendocrine breast cancer in Oct 2011. I started a clinical trial at Mayo Clinic immediately for 12 weeks, my tumor shrank drastically (this treatment is now in the approval phase). Then I had a lumpectomy on Feb 9, which got clean margins. I am now going through the 4 A/C chemo treatments over 8 weeks, then I will be doing radiation and hormone therapy. I have three sons, the ages of 6, 4, and 2. As you know there isn't much information about this cancer, hearing that you are 5 years cancer free is wonderful news. Hoping for many, many more years of cancer free life for all of us!

Kssb1967
Posts: 5
Joined: May 2012

Mine is/was poorly differentiated. I was 40 when dx. I'm now 45. Had surgery, reexcision, chemotherapy (TACx6), and radiation. Tamoxifen and now Arimidex. Large cell neuroenocrine breast cancer with extensive vascular invasion. Lymph-node negative (3 removed). Dx and first surgery at Sharp memorial in San Diego. Reexcision and treatment at Fox Chase Cancer Center in Philadelphia. A year later relocated back to San Diego and continuation care at UCSD and coordination with Cedars-Sinai/Dr. Wolin. 5 yrs! 5 Yrs! P53=97%. ki-67=44%. bad juju there.

p26274
Posts: 1
Joined: Jun 2012

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.

Steviekae
Posts: 2
Joined: Apr 2012

Mayo has been absolutely amazing! Each stage of my treatments have gone better than I hoped for. All of the doctors work as a team and when I had my first appointment, it took a while for them to come to the exam room. They said that all the doctors were looking at my case - since it is so rare, to find the best treatment plan, that was why it took longer (I was totally fine with them taking longer to collaborate). If you come in with this type of cancer they give you the best doctor to deal with that type. I see Dr. Goetz and Dr. Wahner-Hendrickson.

My email is steviekae@yahoo.com

satamara
Posts: 6
Joined: Dec 2012

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?

AnneLene's picture
AnneLene
Posts: 27
Joined: Jun 2012

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

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

satamara
Posts: 6
Joined: Dec 2012

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?

monkabell66's picture
monkabell66
Posts: 3
Joined: May 2012

Hi there, oh gosh how pleased am I to discover someone who not only has had the same diagnosis as myself (june 2011) but who has survived beyond the 5 year mark!!
I am Stpehanie, a 46 year old mum of 4 and grandma to 3 little angels who has already had DCIS in 2007, then a 5.6cm grade 3 neuroendocrine breast carcinoma in the same breast just 3 and a half years later.After a mastectomy and immediate recon I had 6 sessions FEC and 17 sessions radiotherapy, on Tamoxifen for 2 years then will go onto exermestane??
I do alot of fundraising for cancer charities here in the UK and unfortunately Macmillan or Breast Cancer Care charities have been unable to put me in touch with anyone in England with the same diagnosis...so I have felt especially isolated...
Having very little or no info on this cancer re:survival rates has made me even more determined to fight and I am so positive...I would really appreciate any advice on how to look after myself now that my treatment is over...though at present I am just recovering from cosmetic surgery to my reconstructed breast as a couple of things didnt quite go to plan...
I'm in shock that I've actually found someone who I can identify with!!
lotsa love

Stef x

Kssb1967
Posts: 5
Joined: May 2012

Email me at kssb1967@yahoo.com

Let's compare notes. Wow... There are a few more of us out there.... Great to find you. Kathy.

Annelis
Posts: 2
Joined: Mar 2012

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!!

satamara
Posts: 6
Joined: Dec 2012

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

MissAngee
Posts: 7
Joined: Jun 2010

Hi. I'm Angela. Not new to the site, I've been hear before, originally diagnosed with lung cancer. I would like to know how you are doing on this drug. I too live in san antonio and am thinking of going to the START center. I too have neuroendocrine carcinoma of the GI tract. Thank you

Ralphfico
Posts: 2
Joined: Apr 2003

hi chris I have nueroendocrine tumors in my liver
I have found treatment and vow to stay healthy.
If you are interested e mail me. (chemo is not effective) Ralph bluecrabs@adelphia.net

Denise6
Posts: 6
Joined: Feb 2003

hi my name is Denise my husband was told he had neuroendoctrine of an unlnown primary liver only we have been through 8 iv chemos and three chemoemolizations this had been 10 month now and i just wanted to know if you had any more info my e-mail is Dwamsley01@sbcglobal.net if i cant remember how to get back to this site please remit thank you very much p.s. he has never been sick from anyof the chemo either so he was healty you need to know how this came to be known how we found out he had this please e-mail me

harma
Posts: 4
Joined: Sep 2003

what all have you had done so far it is dec 1st

Monawolf
Posts: 1
Joined: May 2005

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?

mherynk
Posts: 8
Joined: Mar 2005

Pardon the lanquage, but that is a dumbass thing to do. The smaller they are, the easier thay are to treat. Neuroendocrine carcinomas are treated differently depending on what kind you have, but don't wait. If he won't treat you, find someone who will. Go to www.nccn.org to find the treatment guidelines for your particular type. Carcinoids and neuroendocrine carcinomas are the same type of tumor, but have very different outcomes. If you truly have a neuroendocrine carcinoma, you need to be treated with an aggressive regimen. Check out the NCCN guidelines and get your official diagnosis (the exact wording in the pathology report). Armed with these, have a very open discussion with your oncologist about treatment options. Additionally, MD Anderson will offer second opinions for a few hundred dollars. Check out their webpage for more information. Good luck.

-Matt

sinkorswim
Posts: 1
Joined: Oct 2011

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 :)

Prospector
Posts: 6
Joined: Aug 2011

Meghan,
Have you researched PRRT treatments? PRRTinfo.org

concernedDIL
Posts: 10
Joined: Nov 2011

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

satamara
Posts: 6
Joined: Dec 2012

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.

 

ninian
Posts: 1
Joined: Aug 2007

Yes, James Yao is a specialist in neuroendocrine tumors. Another specialist at MDA is Dr. Alexandria Phan. She treated my wife for a metastatic pancreatic neuroendocrine tumor, and we were very pleased with the quality of care she received.

tebolt
Posts: 5
Joined: Aug 2010

      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.

debbiewesch
Posts: 3
Joined: Jan 2013

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

tonidale
Posts: 1
Joined: Dec 2010

have you heard of this treatment? this is glass radioactive beads that are injecte to the liver. my friend has had this twice for his cancer. he is still having a battle. he is i think 3 yrs into his cancer and many surgury radiation and the TheraSphere treatment later his lastest results as of yesterday was the tumers are the same. great news they have not spread of gotten bigger. but the same..sad news to me..

mr steve
Posts: 286
Joined: Sep 2009

It was offered to my wife. we went with just the chemo injected into the liver. where is your friend getting treatment?

dlaarndt
Posts: 6
Joined: Dec 2010

They have offered these to my husband who is 63 years old and we are going next Friday for the test to see if he can have them, hopefully they will work. He has had 18 Chemo treatments and now his platlets will not get high enough so he can not get any treatments. they wanted to change his treatment to the pill and another chemo. He was on 4 hours at the doctors and then he went home for 46 hours on a pump, but his body just cant rebound this time so hopefully the therasphere will work.

dlaarndt
Posts: 6
Joined: Dec 2010

They have offered these to my husband who is 63 years old and we are going next Friday for the test to see if he can have them, hopefully they will work. He has had 18 Chemo treatments and now his platlets will not get high enough so he can not get any treatments. they wanted to change his treatment to the pill and another chemo. He was on 4 hours at the doctors and then he went home for 46 hours on a pump, but his body just cant rebound this time so hopefully the therasphere will work.

dlaarndt
Posts: 6
Joined: Dec 2010

They have offered these to my husband who is 63 years old and we are going next Friday for the test to see if he can have them, hopefully they will work. He has had 18 Chemo treatments and now his platlets will not get high enough so he can not get any treatments. they wanted to change his treatment to the pill and another chemo. He was on 4 hours at the doctors and then he went home for 46 hours on a pump, but his body just cant rebound this time so hopefully the therasphere will work.

Ralphfico
Posts: 2
Joined: Apr 2003

bluecrabs@adelphia.net

Denise6
Posts: 6
Joined: Feb 2003

if anyone has this or knows anymore information on this kind of cancer of the unknown primary that is only in the liver please remit thanks

harma
Posts: 4
Joined: Sep 2003

hello raf can you help me with this neruoencotrine tumor of unknown primary only in the liver ? email me at Dwamsley01@sbcglobal.net

Denise6
Posts: 6
Joined: Feb 2003

please go to the e-mail address i sent to you ok i really need to talk to someone i cant talk to my kids . and i know alot about being a doctor im a mother of 4 thanks again

Denise6
Posts: 6
Joined: Feb 2003

please remit back to me at dwamsley01@sbcglobal.net

grand442003
Posts: 1
Joined: Dec 2004

Hello Chrisaw; My name is Grand and I was diagnoised with Neuroendocrine Carcinoma in March 2001 and I was told by my doctor that I had 3 months to 5 years to live and I looked at my doctor and told him it was up to Dr. Jesus; I immediately started praying and I asked God for a healing; John 14; What ever you ask in His Name He Will Do It; The cancer is stable; I give all the Praise and Glory to God; I also asked God to send me to M.D. Anderson Cancer Center and God answered my prayers. M.D. Anderson Cancer Center is one of the best Cancer Center's in the world. I was on regular chemotherapy and now I get an injection every month. The injection is call Sandostatin Lar Depot. The cancer has'nt grown since i was diagnoised March 2001 and I give all the Praise and Glory to God. There's Nothing God Can't Do. All you need is faith as small as a mustard seed. Chrisaw if you ever need to talk please e-mail me at grand442003@aol.com; A Friend Forever Grand;

Kimpossible
Posts: 1
Joined: Feb 2005

Hi Grand. I saw your message. My name is Kim, and I have just been told that my cancer (neuroendocrine carcinoma, cervical) has re-occured with mets to the liver. I am very scared. Please help me by giving me any info you can. I know that God can heal me, and I am praying. I have an 18month old baby to live for, so plaese help me. Kim

mherynk
Posts: 8
Joined: Mar 2005

Hi, my wife has recently been diagnosed with large cell neuroendocrine carcinoma of the cervix and we are looking for information. She would like someone to talk to who has gone through the same battles that she is about to go through. We are just beginning this journey. http://prayforkara.blogspot.com

AuthorUnknown
Posts: 1564
Joined: May 2006

Hello,

You may want to do a search of the CSN web site by typing in relevent search words in the search box at the top of the page. You can then browse through the web pages and postings. If you find someone with an experience similar to what you are looking for, you can then contact them through the CSN internal email system.

You may also want to post your request on the Cervical Cancer discussion board. You may find someone there who has had this type of experience.

I wish you wife well on her treatments.

Take care and be well,

Dana
CSN Dana

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