Welcome to Cancer Chat Sejjjc although I'm sorry about your husband's diagnosis.
You can find out more about small bowel neuroendocrine cancer just here but if you'd like to have a chat with one of cancer nurses, they're available on 0808 800 4040, Monday - Friday between 9a.m - 5p.m.
Hopefully some of our members who have been on this journey will share their experiences and advice with you soon but do feel free to have a look around and join in on any discussions you find about this diagnosis when using the 'search forum' option in the purple bar above.
My husband was diagnosed with a stage 4 pancreatic neauroendocrine tumour December 2015. I can remember the shock like it was y'day, I couldn't believe what the surgeon was telling me, so I completely understand your devastation. I like you wanted to know everything, I needed to know, where as my husband tried to bury it, he still does, he doesn't want to know anything, it's how he copes. He has monthly laneotride injections at the surgery, he is scanned every six months and usually sees the oncologist a few weeks afterwards for an update . He has stayed reasonably well, continuing to work for the first 2 years after diagnosis. He wanted to live as normal life as possible, not giving in at all. Until Covid we continued to travel, we have had some fabulous holidays since diagnosis. We make plans, we carry on living, until recently people who didnt know, would have been shocked to learn he is ill. Unfortunately things have progressed at the last two scans and we are now moving on to a different treatment PRRT. We hope and pray it works and gives us many more years together . My advice is find out as much as you can about neuroendocrine from sites like this . Make sure you are being seen at a centre of excellence in neuroendocrine cancers. Do exactly what your consultant tells you to do ( that advice came from the surgeon ) . Accept help when offered, in the early days after the emergency surgery it was difficult, but the help from friends and family proved invaluable. Make plans, they can always be changed if necessary, but be positive and look forward. There are Nets groups you can join, natter groups, which I'm sure for some people are a great help, for us not so as my husband doesn't like to talk about it with other people. I thought our life was over but how wrong I was, we have had a good 5 years, yes we're living with cancer and sometimes my husband feels exhausted,but he copes well. Diet is important, do your research. I wish you well as you start your journey, Best wishes to you and your family.
thank you so much for your reply , that helps a great deal my husband had his first laneotride injection last week and it's given him some of the side effects but I'm staying positive.
He is awaiting two scans one for heart and another that shows every where it has spread, we know it's already in the lymph nodes and small bowel.
I have tried doing lots of research and am trying to stay positive the one big thing that I have read is alcohol can aggregate it and my husband is still drinking I have tried talking to him about it but he dosnt seem to want to cut down even though the dietician told him to, he is losing weight as appetite is not good
I do hope your husband responds well to his next course of treatment
fingers crossed for you
I am going to try and talk with my husband and show him there is light at the end of the tunnel
Rob had several side effects initially, nausea, tiredness, hair thinning and diarrhoea, but they became less after the first two or three months. He is still always tired for a couple of days after his injection, but he just accepts it.
Dietician told me to add cream and fat to everything initially, just to get the calories. Rob said he had no appetite, but did make himself eat even if he didn't want to. Your husbands is in shock too, hopefully once he gets his head round it he will settle down and take on board advice from the professionals. Men can be stubborn!
my husband has now had the nuclear scan and we go for results on Tuesday
we are both dreading the results but want to know at the same time
we were initially told they could not do surgery and only offer the lanreotide injections ( which after a week) seemed to have made him feel better but he is alas still drinking far too much alcohol
Good your husband felt better after a week or so, the injection will make him feel unwell the first couple of days. Sorry to hear he's still drinking, that must be very frustrating for you, he's probably still trying to get his head around everything, hopefully he will cut down in time. Waiting for results is always the worst time, everyone on hear will tell you the same. I hope it goes well on Tuesday and there are no more surprises lurking. Rob hasn't been too good, having spent a week or so in hospital he's home now recovering. He's still awaiting the start of PRRT hopefully it won't be too much longer. Let us know how you get on Tuesday, I'll be thinking about you.
