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    1. Nikki

      Has anyone had carcinoid tumours on the liver and a chronic cough… which you pass out with?


    2. kym

      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


      • Please call our helpline on 0800 434 6476 or email [email protected] Catherine will be happy to help you.


    3. Brenda

      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.


      • Brenda

        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!!


    4. Sharon

      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


      • Geoff Earland

        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


      • Diane

        I have the same as your father. Had the primary tumor removed Sept. 2012 after suffering horrible bouts of abdominal pain- 3 day events. The doctors in my area know nothing about this disease, my primary physician says he is learning through me. I then had 2 liver ablations with Y-90. That got all the tumors on the right and the left lobe of the liver was luck with that ablation..I now have a very small something in the right liver and go back in July, 2013. I am going the The University of Alabama- Birmingham..They are very experienced about this disease. If the tumors return, they will be directly treated. I am doing great and work every day at my job.I am 63 and I am blessed. I know I have stage 4 cancer and will die of this. I am giving this to my God…My advise- go to an expert in this .If it weren’t for UAB, I probably would not be in the world for long..Good luck and God bless us all!!!!


    5. Bev

      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


      • Sandy Caplan

        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.


      • Anna

        What treatment have you got or will get?


    6. Anna

      My husband was diagnosed with Neuroendocrine Pancreas Cancer a couple of mont ago. He found out that he had a problem due to something “hard” on his upper stomach as well as loosing some weight and appetite. It turned out to be a big tumor on top of his liver, big as a mans hans, and many inside the liver.

      Now we also know he has metastases in the bones, here and there, and some lymphs as well. The mother tumor is a small one on the pancreas tail. He has had no symptoms at all, but the doctors believe it has been there for many years until it started to metastases. Too late to operate.

      First line treatment of chemo did not work (Cisplatin and Vepesid), there were more metastases in the liver and the bones.. He has been feeling quite OK all the time, all blood tests has been OK, also the liver.

      Now second line has started (Zeloda/Temodal/Avastin).

      Anyone gone through the same? If this does not work, what might the third be? Do they have different chemo as first line in different countries? What about Y90? do they do that even though it is widley spread to the liver and one tumor is very big?

      I am very worried, of course.


    7. Michael

      My wife in similar position. Metastaces? on the pelvis and multiple in the liver. Radio therapy for the pelvis just complete and the chemo is to begin shortly.

      How is the second line of chemo progressing?


    8. lynne armitage

      I was first diagnosed in 1997 after being told for about five years that I had irritable bowel. When I was diagnosed the primary tumour in my bowel was removed but the tumours in my liver could not be removed.I have had one successfull attempt of chemo embolisation to the liver (two were unsuccessfull) as my liver arteries kept going into spasm. I then had chemo tabs for nine months. In 2008 it was found the cancer had spread to my bones so I had Ytriun90 therapy. In 2011 there had been further spread in my bones and lymph nodes so i had chemo tabs again for 8 months and two lots of radiotherapy. I have been having lanreotide injections for about 6 years . I also have zolodronic acid infusion 8 weekly. Would like to hear from others how you cope and treatments had.


    9. My husband has recently been diagnosed with multi carcinoid tumours of the liver. Described as primary liver cancer since it is nowhere else to be found despite four months of tests and scans etc. Extremely rare we are told that it has started in the liver. He is now having treatment. Lanreotide injection, once a month. So far he has had three injections and scan shows his condition is stable which would indicate that the treatment is working. Dont know much about it would like to learn more.


    10. Viv Preston

      In June 2012 I had an 8mm net removed from my small bowel which was supposedly a tiny benign tumour. I was then told there was some spread to the lymph nodes. Obviously size was not relevant! I have never had any symptoms and all blood tests and scans have proved negative. My tumour was originally found through unrelated investigations. I am not being offered any treatment at the moment as there is “nothing to treat”. Information about my condition has been limited,vague and confusing.It has been described as a cancer by one professional andr then as not cancer by another. I am left not knowing what to think. It is very difficult to cope at times, but I am trying to stay positive and “getting on with my life” and keeping busy seems to help the most. I am 48 with 3 teenage children, and would love to hear from people in a similar position.


    11. Brian Pearce

      I found a lump in my neck in February which has been diagnosd as a secondary, The primary has not been found and the outcome is Neuroendocrine cancer after a few months of testing the diagnosis came in May 2012 and I have tumours mainly in the stomach and also on the liver. I have started a course of Sandostatin injections every 4 weeks but I am suffering with chronic constipation and bloated stomach I wonder has anyone else experienced this and what helped.
      Thank you so very much


    12. diane kimberly

      A year ago this month after a CT scan showed tumors in my liver, the primary tumor in the small bowel was removed. It was very large and 6 inches of small bowel, appendix and part of the large bowel was removed. The doctor said she didn’t know how food was getting through.I had suffered from horrible bowel attacks for 5 years(local drs said it was diverticulitis although a CT scan 2 years prior was read normal when in fact the tumors were present then. After the bowel resection, I had Y90 in the right liver(killed all the tumors) and Y90 to the left which didn’t have good results. 15% of the left liver was removed after that. Went to the doctor three months later and CT scan was ok and blood markers ok. I go back in January for follow up. Thank the good Lord I found very smart docs at UAB, that KNOW this disease. My family doc has never heard of this NET(carcinoid). I was asymptomatic except for the bowel attacks and should have been more aggressive in finding help.I am going to work everyday and am blessed. I still feel like I have a sword over my head and don’t have the get-up-and-go I use to have.How long can you live with this??? They said the tumors will return in the liver..Chemo is not an option..Your remarks have helped me a lot. Thank you..


    13. Gareth Graham

      My wife was diagnosed with a NET earlier this year which has metastasized to her liver. This was discovered after admittance due to a clot in her leg. The clot was probably caused by retroperitoneal fibrosis which also resulted in blockages of both ureters and narrowing of her main vein(IVC). She was put on a course of steroids which didn’t shrink the fibosis. She has also had various different stents tried out including double stents but none were successful so she has to keep with 2 nephrostomy bags. Has anybody had this fibosis with complications, and have you had success in shrinking it enough to free up your ureters, veins? Any suggestions would be vey much appreciated. Thank you


    14. ann showler

      I was diagnosed with a net of the liver in May 2012, I have had 3 courses of chemo and was prepared to have a liver operation but the surgeon could not do it as the tumour was near the vein and I would bleed to death. I went to the Royal Free today and been told I am to go on a course of hormone injections. Has anybody had these injections and are there any side affects. I currently don’t really suffer from the cancer apart from feeling tired and ache where I have had a portal vein embolism getting me ready for the operation that I now won’t have.


    15. Laurie Gashinski

      Hello to all UK Zebras.

      Laurie Gashinski, a renal noid from Canada here. I’m just reaching out to the World NET community for a bit of support after learning about my newest spread to tertiary lymph nodes that are now deemed inoperable.

      As a bit of a tongue-in-cheek adventure, I’ve given myself a challenge to attempt “52 Cancer Cures in 52 Weeks” to keep my spirits up while I navigate this new palliative phase of neuroendocrine cancer. If you can handle a bit of dark and irreverent humour I invite you to join me in my adventure on my Facebook page “52 Cancer Cures in 52 Weeks”.

      I look forward to expanding my support network to other Noids “across the pond” to learn about the therapies that are being offered in the UK and Europe as I believe you are a bit ahead of us here in the colonies. I would really love to hear from anyone who has undergone LU177 treatments as that may be my next step depending on upcoming tests and the health of my own remaining kidney.

      I look forward to hearing from a few of you. Wishing you all the best and keep your spirits up as we shake our collective fists at this disease.

      Sincerely, Laurie


    16. Carole

      hi I have just read what you posted a couple of years ago and totally relate to what you said. I am 51 and in January this year I went to the doctor about getting HRT, my blood pressure was slightly high, but I felt totally fit and well. She sent me for a kidney scan and by accident a big tumour was spotted on my pancreas. All hell broke loose. Initially it was assumed by everyone including my own doctor that it was pancreatic cancer. Eventually tests showed it to be an NET tho not malignant. Unfortunatly the tests threw up another shock that I had a tumour in my head. This turned out to be an entirely unrelated, benign and common tumour . After a nightmarish few months and whipple surgery six months ago I too am finding the emotional trauma of the last year the most difficult to cope with. I still have to go thru scans and tests for both tumours but trying to stay positive and am looking forward to returning to work as soon as I can to get some sort of normality back into my life.


    17. Liz Dwan

      Hi My husband was diagnosed in April with NET which presented with a large lump under the arm. This was 8cms and grew rapidly. It was a secondary, he also has a small tumour in the groin. The primary is suspected to be in the lung (ttfi positive) but does not show on any scans. it is described as poorly differentiated metastic NET. Surgery was not recommended. He had no sickness or any indication that anything was wrong apart from the lump under the arm. He had 6 sessions of carpboplatin and etoposide after which the large tumour shrunk to 3cms and the small one to 1cm. The medical oncologist would not do any more chemotherapy. His endocrine consultant has now recommended 25 session of radiotherapy. I have never heard of anyone with the same type of NET. Is there anyone out there with similar? I would love to know if there is any other treatment available. I have spoken to Dan Granberg in Uppsala and he cannot treat him as its >90 on the ki67 index.


    18. liz dwan

      My husband was diagnosed in April this year with a poorly differentiated metastatic NET with secondaries in the underarm and groin. He had 6 sessions of carboplatin and etoposide chemotherapy. The tumours shrunk significantly. He has been well throughout and would not have known anything was wrong but for the large lump under his arm. The ki67 index is over 90%. The primary has not been found despite many scans and is suspected to be in the lung. He is starting radiotherapy next week for 25 sessions. Surgery is not an option. We are very worried as the prognosis is poor and no one seems to have a similar type of diagnosis so we have nothing to compare his with.


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