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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

BellaSusie
Posts: 3
Joined: Nov 2011

Does anyone on here live in PA around Lancaster PA?

Thanxs BellaSusie

benhaynes92
Posts: 1
Joined: Nov 2011

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
Posts: 1
Joined: Dec 2011

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.

jbrumby111
Posts: 1
Joined: Feb 2012

i am searching for some expirience strength and hope...we have been told so many different things and went from being a non aggressive cancer that needed no treatment to being an aggressive cancer that ended us up at duke university with no hope...my dad just keeps getting worse while our original C doc told us up until last week dads problems have nothing to do with his tumors...i am so frazzled as you may see from my scattered post but if someone could discuss... it would be great.
thanks

mr steve
Posts: 286
Joined: Sep 2009

J,

NET, does sometimes get aggressive when it moves to other organs. There is always hope, even with the worst outcome. Does Duke have a onc that works mainly with NET?

Steve

brendypoo
Posts: 4
Joined: Mar 2012

Hey this is my first time on line just found you guys. My husbands was diagnosed 5 years ago with neuroendoccrine tumors in his liver. we were told he would only live 3 months. that was 5 years ago. Just had new test done in jan cancer is spreading but not near as aggressive as they told us. how old is your dad

linh
Posts: 1
Joined: Apr 2012

Sorry, I don't know how to post this as a new thread.

Hello everyone,

I am new to this site and hoping to find more answers on treatments for NeuroEndocrine Carinoma. My step father was diagnosed with this cancer 2 weeks ago. He is currently on state 4. He was hospitalize for a week but was later kicked out of the hospital because the insurance will not cover the cost. So far, they did blood work and biopsy. He was told to wait for further results, which could take up to a few weeks. His cancer has spread to lungs, liver, spleen, and pancreas. He is in so much pain at the abdominal area. The only meds prescribed to him were morphine and motrin. We are devasted to see him like this. We pray every day for a miracle. I am very displease with the doctors because I feel like they are not doing anything to help stabilize the condition. They were not able to find where the cancer started from. He hasn’t been on any type of treatments such as, chemo, or pills, or radiation. I am afraid that if they don’t start treatment on him soon, the cancer will spread more and it will be difficult to contain.
He has excruciating pain at the abdominal area when he laughs, cough, sneeze, and yawn. He has occasional headaches that last for about 1 hour. I’m afraid that the cancer might spread to his head. We are requesting to get a cat scan for his head, but we were told by his provider (Kaiser) to wait.
Please help!!!!!!!!!! Any word of advice, anything helps.. I can be reached at huy.mao@gmail.com or 503 8751896.
Thank you!
Unfortunately, the doctors that treating him have no answer

comghj
Posts: 2
Joined: Jan 2012

From what I have read about Neuroendocrine Carcinoma there must be several different varieties. I was diagnosed back before Christmas 2011. I went to have my regular physical and my docotor was alarmed when he saw my liver enzimes were off the chart. I went to have an ultrasound and that's when they found metastatic lesions on my liver. Next was a CAT scan which revealed 7-8 lesions on my liver......real nice to find out just over a week before Christmas!!!! BTW don't do research before you hear from your Oncologist, that was the worst week of my life. December 23rd I found out I had Neuroendocrine Carcinoma, which was a relief since I thought I had liver cancer, and was told I could live years and years by getting a shot (Sandostatine LAR) once a month. What followed was a colonoscopy and EGD, biopsy, PET scan and CAT scan. Fortuneatly they found the primary tumor in my lower intestines which has given me the opportunity for surgery.

What I have going for me is that I'm 41 and in good health, what worries me is that I have 4 children under the age of 12. I've had much to consider, but have decided for the surgery, it's a huge chance to rid my body of cancer completely.....problem is this is what I'm having to do.

First procedure, RFA (Radio Frequency Ablation) to one lesion on the left side of my liver. Then 3 weeks later, a right portal vein embolization, which is cutting off the blood supply to the right side of my liver (where most of the lesions reside), I'm a week out from that procedure as I write this. Then after about 3 weeks the left side of my liver should grow enough to allow surgeons to remove the right side of my liver, part of the left side and a section of my lower intestines where the primary tumor resides.

Needless to say I'm taking a huge risk, but I think the benefits out way the risk. As long as the tumor hasn't spread and the surgeons do a good job, I should be cancer free after all this....no chemo, radiation, nothing. I hope I'm doing the right thing.

comghj
Posts: 2
Joined: Jan 2012

UPDATE:

It's been nearly 6 months since my surgery and I'm doing fine. Been back to work for 4 months now and pretty much feeling normal. They still say it will take 6-12 months for a full recovery, which makes sense since they cut from sternum to belly button in the shape of a J. I was supposed to spend 5-8 days in the hospital but I was so good they extended my stay to 3 weeks!!!!

Kssb1967
Posts: 5
Joined: May 2012

In February 2007 I was diagnosed with this rare subtype of invasive ductal carcinoma. My neuroendocrine tumor had extensive vascular invasion. P53 was 97%. ki-67 was 44%. I had lumpectomy, reexcision, chemotherapy (TAC x6) then aggressive 4-week radiation with boost protocol (phase 3 trial). Then tamoxifen for 10 months, Arimidex for 7 months ( couldn't tolerate side effects anymore), then back to tamoxifen for 4.5 yes until it seemed to not be effective so back to Arimidex again. I am now 5 years from diagnosis! I am 45.

traceymbanks's picture
traceymbanks
Posts: 4
Joined: Feb 2010

Please tell me more. I was told in 2009 Ihad small cell neuroendrocine carcinoma

traceymbanks's picture
traceymbanks
Posts: 4
Joined: Feb 2010

Please tell me more. I was told in 2009 Ihad small cell neuroendrocine carcinoma

traceymbanks's picture
traceymbanks
Posts: 4
Joined: Feb 2010

Please tell me more. I was told in 2009 Ihad small cell neuroendrocine carcinoma

traceymbanks's picture
traceymbanks
Posts: 4
Joined: Feb 2010

Please tell me more. I was told in 2009 Ihad small cell neuroendrocine carcinoma

survival wisher's picture
survival wisher
Posts: 1
Joined: Sep 2012

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.

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

The internet link is to the University of Uppsala in Sweden and I think they are quite good, but you can take a better look (they are togheter with the hospital Karolinska in Stockholm) . The information is also in English and I think they also treat people from the US, so you can maybee try them (if not try to ask were!)!

http://www.akademiska.se/endocrinetumors/
http://www.medsci.uu.se/forskning/Cancer/Endokrin_oncologi/

Good Luck

Anne Lene

palomi's picture
palomi
Posts: 2
Joined: Apr 2013

Thank you!Smile

bowk61
Posts: 9
Joined: Sep 2012

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.

msdavis50
Posts: 1
Joined: Jun 2011

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.

tebolt
Posts: 5
Joined: Aug 2010

Dr. Wolin was just at a conference in India for this cancer.  I live in California and he said that the place in India is about ten years ahead of us.  Can't remember the name of the city but he said it was beautiful - a planned city - nothing like the rest of India -

maricarmen
Posts: 1
Joined: Mar 2012

Hello, my brother has lung carcinoid.  He lives in San Antonio. Wondering what are the best doctors or centers in SA to treat him and help manage this disease. Is the Start Center a good place for him?  Would appreciate any suggestions, advise, guidance.

Thank you.

tebolt
Posts: 5
Joined: Aug 2010

I think if you look up Caring for Carcinoids there is a list of doctors all over the country.  Not a lot of them but they are spread out.

redlensman
Posts: 3
Joined: Oct 2012

I was diagnosed with lung cancer in 2001. They removed right lung in 2007. Tumors on outside of chest wall on back were removed about a year ago and were determined to be NET. Also have liver and prostrate cance and some bone metasis. My biggest problem at the present time is that the young women around here seem to be able to outrun me. :-).

 

palomi's picture
palomi
Posts: 2
Joined: Apr 2013

Hello to everyone, I'm living in spain, my father has a neuroendocrine carcinoma in the Vater Ampulla, and the oncologist told us, that the only treatment by the moment here in my hometown, Zaragoza, is chemotherapy for this types of tumors. He is havind a recovery after 4 weeks almost from the Whipple procedure. All that I want to tell you guys is keep on fighting. He is not well today, had fever, 38,4ºC as maximum which gets downs with paracetamol (1mg). In some moments that he is receptive to it i give him some reiki (japanese bioenergetic treatment which is prescribed for enduring and make the natural defenses of our body strong) treatments (as much as he can keep his position). 

I hope tomorrow will be a better day to him and we can find some formula for his weight. 

Life is a gift, keep on smiling guys!. I give you my energy. 

Thanks in advance for read my testimony and excuse me for my language as I'm studying English. 

Best of Luck!

God save us!

Paloma

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