Hi Deb,

Welcome to Cancer Chat and sorry for the reason that has prompted you to join.

This is not good news for you, but I had to smile at your question in the latter paragraph of your post. I have had breast cancer for 7 years and had a second bout 6 years ago. I have also lost my Mum to secondary breast cancer, along with several relatives and friends.

If you want to get in touch with others who have had neroendocrine tumours, I suggest that you use the search facility on the blue bar at the top of this page and enter your key words. This should bring up previous posts about your type of cancer, which you might find helpful. It will also put you in touch with others who have been or are going through the same experience as yourself.

Just after diagnosis we suffer a whole raft of emotions, from anger, denial, depression, desolation, worry for family, fear of death, inability to sleep, crying, a nightmare to live with and snappy, to name but a few - the list goes on, but you get the gist. This usually begins to settle down when we start treatment and feel that we are doing something about the cancer.

Your case is rather different. This must have come as a terrible shock to you, especially to find out that you have had it for at least 5 years and didn't know it? You are not just dealing with the diagnosis, but also the prognosis, with little time between the two. You must also fnd the fact that it is inoperable very frustrating.

I think that anyone who has been given a cancer diagnosis, lives in fear of it spreading from primary to secondary. I liken it to having the 'sword of Damacles' hanging over us for the rest of our lives. We never really manage to shake this fear off. When people ask 'when will I feel normal aain', I have to say 'you won't', as this fear stays with us to the end of our days.

I lost my best friend to bowel cancer a few years ago. They operated early on  and she was given an irrevrsible colostomy. In her final few years she was on palliative care only. She refused to let cancer take any more of her life than it had to. She said that her life was too precious to waste on worry. Instead she concentrated on making memories with her family and friends. She saw her 2 lovely grandsons enter the world and met up with her friends regularly. How she managed it all, when she was so ill, I don't honestly know, but I never once heard her complain. She even got the house completely refurbished so that her husband didn't need to worry about that after she had departed. I miss her sorely, but she was a shining example to me and I intend to take a leaf out of her book, whilst I am able to.

Do you have a family? If so, please make sure that they have plenty of photos of you. These will be of great consolation long after you have gone. Have you decided whether you want to see any friends or family that you maybe haven't seen for a while? Now might be the time to do this if you have.

I am glad to hear that your cancer is slow growing and not an aggressive form, and I hope that you live well past your 2-5 years. Don't forget that doctors can be wrong too!

Coming back to your question, I was like a bull in a china shop for the first couple of years, but I believe that I have come to terms with my own imortality now. I cannot answer for you, because, sadly you are in a different position. Some of the people I have known with secondary cancer, have remained angry and quick to flare up, whilst others have returned to a better frame of mind. Some of this may be more to do with the medication that they're on, rather than the diagnosis itself.

Reading your post, I feel that you sound quite positive about your position - you will have your bad days too. Everyone has. I hope that you can remain upbeat along your cancer jourrney. This should prevent you from letting this terrible disease, eat away at your mind as well as your body.

You sound like an extraordinarily brave lady and I pray that you will continue to stay this way to the very end.

Please keep in touch and let us know how you are getting on. We are always here for you, whenever you feel like talking to someone.

Kind regards and utter respect,

Jolamine xx

Hi Deb

You are not alone. I too have been diagnosed with Neuroendocrine tumours. My diagnosis is not yet complete but I understand how you feel as discussed by the earlier reply. It is such a complex cancer to understand, coupled with the fact that nobody seems to have heard of it - makes it that much more difficult. 

I hope that you have found the Nets Foundation site since September and you’re under the care of Nets specialists.

Please let us know how you are doing.