I can see you updated your About Me about your journey with NETS so I'm just going to create a link so our members can find out more about you and the reason you've joined the forum.
[@Silvertongue1] and [@kiki63] are some of our newer members that have recently been contending with this diagnosis and [@andydorro1] has been living with NETS for over 10 years so hopefully some of them will be along soon for a chat now I've mentioned them in this post.
If you have any questions about your diagnosis, our cancer nurses can be contacted on 0808 800 4040, Monday - Friday between 9a.m - 5p.m.
Living with NETS is one of the loneliest journeys I have ever been on . I was discharged from hospital after being told I had cancer on the 19th January this year . Since then I have had no support or contact with the specialist nurses . I have had to do all the research myself online and I have been the one to push my consultant into starting me on octeotide as the symptoms of the carcinoid syndrome are truly debilitating. Everyone tells you how well you are looking but to even manage to keep my weight constant is a battle . My consultant, who was a NET specialist ,has just left the hospital and I worry about who I will see now . Getting back to fighting fit and returning to work is what keeps me going . There just doesn’t appear to be any support groups for NETS ... I wasn’t even tol I could have an exemption certificate and was buying all my own medicines as loperamide were not given on prescription at my surgery . There really should be more help .
I was in a very similar position to you. I was told I had a rare type of NETS cancer but no one sat me down and really explained properly what it meant, where it came from, where it originated. All I knew was I had a tumor near my liver, it had covered my liver spattered across my duodenum and covered one of my ovaries. I was split between two hospitals one took care of my bowel surgery which included removing the tumor taking away some of my colon, thining a part of my large intestine and reversing a stoma and the other hospital gives me my octreotide injections and monitors my cancer for the other hospital in London. I also have sciatica, nerve damage from the tumor operation and IBS. It took along time for me to find information. I went on the London hospital's website for NETS patients and on the Cancer website and started teaching myself and then my doctor about it. I'm now 18 months down the line, I've just been down to the London hospital for my second Nuclear Scan and I have to wait to see my Consultant until 8th July before I find out whether they are going to remove my ovary. I've had constant trouble with my bowel and find eating a nightmare but now I have an appointment with a dietician to hopefully advise me about the things which might aggravate me.
Having said all this, my husband has been amazing, holding my hand when I've been on the floor in agony and cheering me up when people we thought were friends and family turn their back on me. There is help, join the NETS patients group. They will send you a pack and a phone number to ring for help and advice and I was told, the lady who set it up was a NETS nurse so she knows what she's talking about.
It is a lonely type of cancer because no one's heard of it and there's not many groups you can visit so you can talk to others with NETS. Good luck.
Hi there Looking back over a period of time there were quite a few . There were times when I had palpitations and my doctor noted my blood pressure was too high , next investigation it was too low . I had flushes just from my shoulders up and lost all appetite . I lost weight and had a stitch type feeling in my abdomen and change in bowel habits . I also became sensitive to the sun and tested isotope for diabetes at one point . I have since found out these can all be symptoms of carcinoid syndrome .
In response to kiki63. I was on 28 tablets a day, had green diarrhoea, pain in my side and in my colon and with the nerve pain left from my stomach reversal or the tumor removal (I still don't know which) I found it hard to get going in the morning, I was often in bed till lunch time and felt like I was going down hill fast. I decided after Mays octreotide injection I needed to do something to help myself so I started cutting out the tablets until I got down to 10 a day and then I saw the Consultant in charge locally who went through my prescription with me and the only tablets I am taking now are for my sciatica and occasionally paracetamol for the pain in my side. I don't have flushing thank goodness and I've never been told anything about problems with the sun. It's like trying to walk through treacle isn't it. I might add though if you have a Maggie's centre near you they will help you get the benefits your entitled to our guy has been brilliant.
]]I’ve found this book online and it has been very useful for me