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neuroendocrine carcinoma high grade

debbiewesch
Posts: 3
Joined: Jan 2013

Our daughter age 34 just had her 3rd baby 4 weeks ago, at the routine c section, her ovary was the size of a grapefruit. Turns out after 3 weeks of pathology she is diagnosed with neuroendocrine carcinoma high grade. PET scan revealed thymus, lung, hip bone, 2 spots on her brain. She had no symptoms, of any problems, other than her pregnancie. She has had her first week of chemo, they are going to radiation her 2 spots in the brain. Everything I research is grim....does anyone out there have any information on this rare type of cancer?

She has never smoked, doesn't drink, a middle school science teacher, 5,3 4 week old children, we are devastated!!

Her onocologist said to think out of the box, she is healthy, young, and determined!!

wildphil
Posts: 1
Joined: Jan 2013

my wife has it ileocecal valve and mastitized to liver she is thirty six and taught first grade 

she was diagnosed on june 28 if you would like to talk call my cell

P. Walker

3184750388 cell

i live in louisiana central time

sorry for all the lowercase easier to type on cell phone 

suebo
Posts: 7
Joined: May 2013

go to www.carcinoid.org.  They list all the NETs specialists in the US.  Dr Woltering and his highly recommended facility is in LA.  Your wife needs to see a NETs specialist.  Also www.heartlandcarcinoids.org is a good resource.  Be pro active -- do the research -- look into prrt in Europe -- 4 places but I think Germany is the best from what Ive read.  God Bless!

suebo
Posts: 7
Joined: May 2013

go to www.carcinoid.org.  They list all the NETs specialists in the US.  Dr Woltering and his highly recommended facility is in LA.  Your wife needs to see a NETs specialist.  Also www.heartlandcarcinoids.org is a good resource.  Be pro active -- do the research -- look into prrt in Europe -- 4 places but I think Germany is the best from what Ive read.  God Bless!

suebo
Posts: 7
Joined: May 2013

go to www.carcinoid.org.  They list all the NETs specialists in the US.  Dr Woltering and his highly recommended facility is in LA.  Your wife needs to see a NETs specialist.  Also www.heartlandcarcinoids.org is a good resource.  Be pro active -- do the research -- look into prrt in Europe -- 4 places but I think Germany is the best from what Ive read.  God Bless!

satamara
Posts: 6
Joined: Dec 2012

my wife 38yr old had breast cancer 2 years back - went through chemo (dose dense AC+ Taxol, Xeloda), Masactomy.

Intially pathology report said - estrogen week positive, pr negative, Her negative with neuroendocrine features.

After 2 years now, she had bloating went to doctor - came to know her cancer spread to liver, bone and lungs. Weare truely worried and great sorrow, hard to describe in words.

she is going through Carboplatin + Havelin chemotherphy. Praying god.

Does anybody has any good treatment that works for this kind of cancer?

Any specialists they can recommend? I live in Dallas, Texas. Oopen to go anywhere if I can get better treatment.

my email id: satamara@yahoo.com. Please help to provide/share if you have any more info.

 

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 and they also treat a lot of people from the USA.

 

I was diagnosed with poorly diff. nevroendocrine cancer in May/June with unknown orgin. They gess the primary cancer is from the small inestine with spread to liver and lung. After first line treatment with Cisplatin and Etoposid the cancer activity is nearly 0 in the moment (the Ki 67 level was orginally higher than 70% so strange). I gess I am lucky Wink I have been looking true a lot of information since my diagnose and I find this Institute as one the places of most interest.

 

Good Luck

 

This is my favorite project (the same doctors are connectet to the "Centre of Excellence for Endocrine Tumors") ;-

http://www.uu.se/stod-uu/onkolytiska/

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 and they also treat a lot of people from the USA.

 

I was diagnosed with poorly diff. nevroendocrine cancer in May/June with unknown orgin. They gess the primary cancer is from the small inestine with spread to liver and lung. After first line treatment with Cisplatin and Etoposid the cancer activity is nearly 0 in the moment (the Ki 67 level was orginally higher than 70% so strange). I gess I am lucky Wink I have been looking true a lot of information since my diagnose and I find this Institute as one of the places of most interest.

 

Good Luck

 

This is my favorite project (the same doctors are connectet to the "Centre of Excellence for Endocrine Tumors") ;-

http://www.uu.se/stod-uu/onkolytiska/

suebo
Posts: 7
Joined: May 2013

I keep reading about a highly rated Neuroendocrine specialist and a whole neuroendocrine facility in Kennar (?) Louisiana.  That would be the closest to you.  The doctor is Dr. Woltering.  Also there is a facility in Nebraska that has several specialists and lots of success.   www.carcinoid.org

suebo
Posts: 7
Joined: May 2013

I keep reading about a highly rated Neuroendocrine specialist and a whole neuroendocrine facility in Kennar (?) Louisiana.  That would be the closest to you.  The doctor is Dr. Woltering.  Also there is a facility in Nebraska that has several specialists and lots of success.   www.carcinoid.org

mr steve
Posts: 286
Joined: Sep 2009

Debbie,

go to a center that treats alot of this type of cancer.

Steve

 

aahkansas
Posts: 11
Joined: May 2012

MY BF was diagnosed may 2012 with a typical nueroendocrine carcinma He had a tumor removed under his right lung which has mestatized to his spine. He feels no pain hes active and has only been given radiation for 10 treatments back in July and he gets Zometa treatments for bones every 3 months. He has no symmptoms either. Other than being tired from some of the meds he takes. Any info you find I would love to hear. and good luck to your daughter. Its devasting to hear Cancer... We say he's living with cancer... not dying from it. MRI's a few weeks ago show to be stable compared to his June MRI'S. This is a rare cancer and Mayo docs say they see only about 2 per year.

cooper98765
Posts: 1
Joined: Jan 2013

Hi, how is your bf going? Mine is 29, diagnosed 7 months ago with high grade neuroendocrine carcinoma. He has just gone to China for treatment-google Next Generation PDT. Would love to chat. panda@live.com.au

aahkansas
Posts: 11
Joined: May 2012

I too am always looking for new info and its hard to find any anwsers, I just keep praying for a miracle or some medical breakthrough.

aahkansas
Posts: 11
Joined: May 2012

Next onc. appt is Jan 24th will try to come back and report any new info.

Annelis
Posts: 2
Joined: Mar 2012

I too have NET, breast as primary. I am wondering if there are any cutting edge therapies and which facilities are the best for NET. Any info would be greatly appreciated! Anne

SharLar's picture
SharLar
Posts: 1
Joined: Jan 2013

I am new to this group.  Diagnosed in June, 2012 with mid-gut (small intestines, ilieum, cecum, appendix).  Mets to liver.  There is a great website for more info.  http://www.carcinoid.org/  they also have a section for finding a specialist.  A lot of patients go to Dr. Eric Liu in Nashville or Dr. Eugene Woltering in Kenner, LA.  

Also, there are a couple of Facebook private groups if anyone is interested let me know.  

I have not been to a specialist yet.  Still looking into it.  

 

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

Hi Anne

i was diagnosed with a primary breast NET IN JUNE 2011... I live near Birmingham in UK and have been looking for anyone with the same diagnosis ... I hope you are well...

What treatment are you having? I'm in remission now 

suebo
Posts: 7
Joined: May 2013

Go to www.heartlandcarcinoids.org or www.carcinoid.org and they have a list of doctors and facilities that specialize in NET.  There are only 5 or 6 in the US.  Very important to use a NET specialist though and not a regular oncologist.  One of the sites stated that using a specialist could double or triple your life span!!  That makes the travel and inconvenience worth it!   Also they have been doing a very successful treatment in Europe since 1996 designed specifically for NET.   www.prrtinfo.org.  Research and read -- there are other helpful sites also.  Houston is doing clinical trials with prrt -- look into that also.  

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

Hopefully you in the moment know how she respond on treatment. I have the same disaster (neuroendocrine carcinoma high grade) with unknown primary from the small instantine and  with metastases to liver, lung and also the brain. The radiation against the brain is normally effective, but since it is the brain, they use to say it is unstable (difficult to know). I think she can be able to get an operation if she have two spots ( you prob. know by this time).

suebo
Posts: 7
Joined: May 2013

I have neuroendocrine tumor and mets to lymph and liver.  I have been told that chemo does not work well with neuroendocrine tumors -- maybe because your daughter's is high grade it will.  If she is not responding to the chemo here are 2 suggestions.  Find a specialist in neuroendocrine tumors -- they are rare cancers and regular oncologists do not know how to treat them.  There are only 5 or 6 specialists in the country -- you will have to travel but it is worth it.  Look into PRRT in Germany with Dr Richard Baum.  Also here are 2 websites to get more information. You need to do a lot of research and be pro-active.   www.heartlandcarcinoids.org.  Watch the 56 minute video by Dr Rodney Pommier and read everything on this site!!    Also www.carcinoid.org.   

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