1 November 2010
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9 Comments
20 June 2011
Has anyone had carcinoid tumours on the liver and a chronic cough… which you pass out with?
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29 September 2011
my friend has a neuro edocrine breast cancer and not much information is available to her via oncologist or breast nurse specialist can you help at all
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6 October 2011
Please call our helpline on 0800 434 6476 or email catherine@netpatientfoundation. Catherine will be happy to help you.
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16 December 2011
I am from the USA and was diagnosed in early Nov. 2011 with carcinoid. I am preparing for surgical removal of tumors in my small bowel and liver. Illeum is my primary site. I am trying to cope and find it hard to function at present due to the pain. So glad to find others with my condition, but not glad that we have the condition. Thanks for the great posts and wealth of information on the site.
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24 January 2012
Hello. So sorry to hear of your diagnosis as well. I underwent a small bowel resection (primary site) where 30% was removed and also had my right lobe of the liver removed. They removed 60% of my liver. This surgery was done on 12/28/11. I had several pulmonary complications following surgery. I am now home and on the long road to recovery. My surgeon says I am progressing well, but with little family support and a long road ahead, I am finding myself an emotional mess. I tend to weep frequently and am feeling sad most of the time. I hope this passes. I have also not had a cigarette since the day of my surgery and am being weaned from the pain meds that I had been on for over 2 years prior to my diagnosis. I am thinking that these 2 factors and the surgery itself are contributing to the meloncholy. I hope you are getting along well. Please keep me posted. God bless!!
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22 December 2011
Hi, my dad has just been diagnosed with carcinoid cancer, there saying that it is behind his small bowel and has spread to the liver. Have to say they have taken there time to diagnose him which is annoying. My dad is seeing a doctor under the rvi in Newcastle upon Tyne, has anyone been referred to a consultant at this hospital and are they experienced in dealin with this type of cancer do you know. They are saying that they would like to operate to remove the cancer from behind the small bowel but that they can’t operate on the liver so can’t completely cure it howvever they have mentioned injections. Do we have to pay for these.? My dad is 65 and looking on this website that a lot of people have been living with this type on cancer for a long time with the injections. Is there Anyone who has had this type where have operation on small Bowel and having injections for the liver. Thank you so much for any replies, we are so worried about this. Xx
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17 February 2012
Hi
I was diagnosed with carcinoid tumour in Dec 2010. It was mis- diagnosed for years as IBS (not uncommon) Since when I have had the primary successfully removed from the small bowel. The plan to remove 60% of the liver to get most of the secondaries was aborted due to a leaking tricuspid valve ( which has now been successfully replaced). I still have some damage to the pulmonary valve to be dealt with. I am on a four weekly injection of sandostatin, which reduces most of my symptoms. ( a low saturated fat diet helps reduce the diarrhoea and I take ‘creon’ which helps a great deal also). I am now commencing radionuclide therapy at King’s Hospital to shrink the tumours. I don’t pay for any of the treatment as it is funded by my PCT. My quality of life is not bad for a 56 year old retired firefighter, I still work part-time and swim and walk etc Hope this helps good luck. PS I am expecting at least 5 good years but am willing to do more to get more
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20 January 2012
I had a liver tumor that was removed and told it was an endocrine tumor but not a primary. I have recently had the news that although they are unable to find a primary my liver has now many tumors and they are unable to cure this. I am trying to be positive and think that I will be ok but to be honest it is hard and I am very worried. Has anyone heard of this situation and how did they cope~?
thank you xx
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1 February 2012
My husband is recovering from small bowel resection for primary NETs inmesenteric lymph nodes & 3 secondary tumors on liver. Gall bladder & appendix also removed. Conflicting lab work show primary as Grade 1 & Grade 3. Follow up in3 months.
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