Hello For All Members and this is the my journey for NET.
My name is Umut and was diagnosed with nets in July 2021, had bowel surgery July 2021Operation 14.07.2021 - Carcinoid tumour of small bowel (pT4 N1, G1 Ki67 <2%, R0, 8 of 20 lymph nodes involved by cancer, and clear all my lymph nodes while i am in surgery also they taken out my gold bladder is well for future problems.
Since this year June i have really ice life quality as normal and eaten drinking everything as normal as well. But i do not know what is happening since than i have had same cramp pain like before look like some one stubbing me and came to A/E 05.06.22 they took blood urine sample and they took CT Scan is well and they found bowel obstruction but strange things i have done my stool and passing wind normal. So they take me to hospital and put tube on my nose clear my stomach than i go hone after 2 days and they said this is complicate because of surgery i have.
Than this is happen to me every 3 weeks and than they found in lymph nodes and liver about 2 cm and start treatment about 3 months ago to get lanreotide injection every 4 weeks, i have done 3rd one now and i am loosing weight is well with this i have start to Creon tablets for keeping fat in my body.
i have done my gallium pet 10 days ago to show where we are about the metastasis and how liver gone than we will see after.
i am in hospital again since 2 days 21.09.22 and they said sane problem bowel obstruction again but before i came to hospital i have done my stool normal again i do not understand what is effecting to do this even i am on under the dietitian control for all my foods i am ok 2-3 weeks than like that i am vomiting like poisoning and spicy watery than all pain gone go or they clean with the tube pin is settled before that when i came with the pain they give morphine to stop my pain.
Some surgeons said i need to do other operation to look at the bowel again i do not know what i can do. It is effect all my life and i am not able to concentrate anything properly at all.
I would love to hear from anyone else who has this type of cancer as it is very rare but most probably some one has same problem with me.
Hi Umut and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I don't have the experience you're looking for, but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list where it will be more easily spotted.
While you're waiting for replies you could have a look through some of the existing posts and respond to any of the posters who you think might have a similar diagnosis to yourself.
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
