Anyone out there with Neuroendocrine Cancer?

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RE: Anyone out there with Neuroendocrine Cancer?

by sueemch on Mon Feb 02, 2015 04:32 AM

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Issy65 that comment was for you, which center in Tulsa are you at? My wife went to St Francis and then switched when they basically didn't have the outlook we wanted to hear. she is now at Cancer Treatment Centers of America, in Tulsa, and she loves it there, it has a very uplifting experience, and everyone has been wonderful there. Sue

RE: Anyone out there with Neuroendocrine Cancer?

by sueemch on Mon Feb 02, 2015 04:35 AM

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Sorry I am not using this site correctly..Which Center in Tulsa are you at? my wife was at St Francis and is now at Cancer Treatment Centers of America there in Tulsa. She is much happier at CTCA. Sue

RE: Anyone out there with Neuroendocrine Cancer?

by TiffanyEH on Sun Aug 23, 2015 07:53 PM

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Hi. My mother is 54 and diagnosed this week with a 3.5 cm tumor in her colon/rectum. Pathology report came back large cell Neuroendocrine carcinoma. Her first appointment is this coming Wednesday at the newnan,ga (Atlanta's) cancer treatment center of America. Any advice information prayers whatever that could help in anyway. Thank you

RE: Anyone out there with Neuroendocrine Cancer?

by deb777 on Mon Aug 24, 2015 01:22 PM

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On Aug 23, 2015 7:53 PM TiffanyEH wrote:

Hi. My mother is 54 and diagnosed this week with a 3.5 cm tumor in her colon/rectum. Pathology report came back large cell Neuroendocrine carcinoma. Her first appointment is this coming Wednesday at the newnan,ga (Atlanta's) cancer treatment center of America. Any advice information prayers whatever that could help in anyway. Thank you

Hi TiffanyEH. I'm SO sorry to hear about your mother. Did they give her a "stage" or let you know if it's slow growing or fast growing? Has the cancer spread? Are they recommending surgery? If not, what are they recommending for treatment? My best advice is - get second opinions if you can - support her in every way that you can (physically and emotionally) - and if you have faith, ask God for healing. I also must tell you that you can take what the docs say with a grain of salt. They are not always right. I learned that firsthand. God bless you both. I will say a prayer for you now. 

RE: Anyone out there with Neuroendocrine Cancer?

by Tammyjojo on Thu Sep 03, 2015 07:11 AM

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Hi, I am 31 years old and due to a 17 yr history of ulcerative colitis I get routine colonoscopies every 2 years. My ulcerative colitis has been in remission, but during my most recent colonoscopy my GI doctor removed small neuroendocrine tumors from my rectum. He told me the pathology came back non-cancerous but said they can lead to cancer and it worried him enough to have me come in for a repeat colonoscopy next week to be sure there aren't any he missed. After reading online about NETs, I have myself really concerned. Does anyone else have a similar experience of first having diagnosis of benign NETs and later developing cancerous NET at original site or metastasis elsewhere?

RE: Anyone out there with Neuroendocrine Cancer?

by BigBlueBill on Sat Sep 12, 2015 09:09 AM

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Hi Jodi. I see your post is old in 2007. How are things today ? I live in perth Australia and have just been told I have stage 4 carcinoid cancer with the syndrome. It is in my lower gut, liver and a lymph node. I have just started treatment with an injection of Lanreotide every 28 days. Operating is not an option at this stage apparently. I am male and 54 years old. The biopsy was low diff grade 1. Hope to hear from you. I have not met anyone on Lanreotide. Regards. Bill.

RE: Anyone out there with Neuroendocrine Cancer?

by debbi725 on Tue Sep 22, 2015 07:45 AM

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My 32 year old daughter was diagnosed with Neuroendocrince carcinoma of the breast and invasive ductal carcinoma, both advanced and very aggressive, on May 14th 2015.  She just finished 6 rounds of Etoposide and Cisplatin with no results, in fact, she now has liver and bone metastasis.  They are scheduling her for a PET scan and a liver and bone biopsy.  She had a CT and a bone scan July 13, 2015 which showed bone mets and a suspicious lesion on her liver.  She had a bone scan and a CT today and she now has 10 lesions on all lobes of her liver with the largest 15cm and additional mets in her bones.  They say she has a couple of months to possible a year to live.  Does anyone have any reccomendations as to any treatment that worked to slow the progression?  Please...I need all the help I can get...she has a 10 year old son and 1 year old twin boys...I can not imagine my life without her!

RE: Anyone out there with Neuroendocrine Cancer?

by Sandi336 on Sat Oct 03, 2015 03:08 PM

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On Sep 22, 2015 7:45 AM debbi725 wrote:

My 32 year old daughter was diagnosed with Neuroendocrince carcinoma of the breast and invasive ductal carcinoma, both advanced and very aggressive, on May 14th 2015.  She just finished 6 rounds of Etoposide and Cisplatin with no results, in fact, she now has liver and bone metastasis.  They are scheduling her for a PET scan and a liver and bone biopsy.  She had a CT and a bone scan July 13, 2015 which showed bone mets and a suspicious lesion on her liver.  She had a bone scan and a CT today and she now has 10 lesions on all lobes of her liver with the largest 15cm and additional mets in her bones.  They say she has a couple of months to possible a year to live.  Does anyone have any reccomendations as to any treatment that worked to slow the progression?  Please...I need all the help I can get...she has a 10 year old son and 1 year old twin boys...I can not imagine my life without her!

Hello, I'm not sure where u are from. But I do know that this type of cancer needs to be treated by a dr who specializes in this type of cancer. There is one Dr Eugene Woltering in Lousiana who specializes on this type. Also, on Facebook, join the High Aggressive neuroendocrine carcinoma cancer support. There are many people there to help with suggestions. Some r fighting cancer and others have been through that with their loved ones. Highly recommend u go there and share the info u provided here to get good feedback. I'm so sorry ur daughter is going thru this....we will never understand but need to take it one day at a time and move forward. Blessings to u and the family. Sandra

RE: Anyone out there with Neuroendocrine Cancer?

by Megabyte on Thu Oct 29, 2015 08:55 AM

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On Sep 22, 2015 7:45 AM debbi725 wrote:

My 32 year old daughter was diagnosed with Neuroendocrince carcinoma of the breast and invasive ductal carcinoma, both advanced and very aggressive, on May 14th 2015.  She just finished 6 rounds of Etoposide and Cisplatin with no results, in fact, she now has liver and bone metastasis.  They are scheduling her for a PET scan and a liver and bone biopsy.  She had a CT and a bone scan July 13, 2015 which showed bone mets and a suspicious lesion on her liver.  She had a bone scan and a CT today and she now has 10 lesions on all lobes of her liver with the largest 15cm and additional mets in her bones.  They say she has a couple of months to possible a year to live.  Does anyone have any reccomendations as to any treatment that worked to slow the progression?  Please...I need all the help I can get...she has a 10 year old son and 1 year old twin boys...I can not imagine my life without her!

I'm really sorry to hear the news regarding your daughter, I don't have any useful information to share other than I feel your pain.

In June of this year my mother discovered she has bilateral breast cancer for which she has a full bilateral mastectomy. Upon reviewing the pathology they determined it was a neuroendocrine tumour, just like your daughter's.

Today she received news following a full body scan that she has bone metastases throughout her body, annoyingly they gave her little more information than that. She is Sydney, Aus and I am in Melbourne, Aus so it's hard to help her.

Hugs & healing vibes to you and your daughter.  

RE: Anyone out there with Neuroendocrine Cancer?

by debbi725 on Fri Oct 30, 2015 12:08 AM

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I hope your Mom makes it thru...I will pray for her and you and your family!

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