Does anyone else have this,or know of someone who has? I am recently diagnosed and starting chemo next week. I am trying to find out where it might spread first,though I realise we are all different. I'm honestly wondering if the "cure" might be worse than the disease. A month ago I knew nothing of this, it has been a total whirlwind of tests,scans, and scary treatment options. Like others on here,it is a rare cancer,so there are not any well established pathways. The prognosis is pretty dire and I'm trying to be logical and hopeful but it is so hard when there is so little real information about it.
And what does a "performance indicator" of 0 mean?Thanks
Hi laburnum
I hope you don't mind me responding as I had a different type of cancer to you but hopefully by doing so it will bump your post.
I am sorry to hear of your diagnosis of a neuroendocrine tumour. I remember with my own diagnosis, it certainly does seem a whirlwind, with lots of testing and decisions to make. I also went from my first symptom to surgery within a month.
It is hard when it is a rarer cancer as there is not so much information around but you could give the Support Line a call and speak with one of the nurses who may be able to answer some of your medical questions.
There is some information here that may help.
Neuroendocrine tumours (NETs) | Macmillan Cancer Support
I had chemotherapy and when I was told I needed it, I did wonder whether the treatment was worth it but looking back although it did make me unwell, it has so far been effective.
Prognosis is a hard thing to get your head around and it is hard for even the doctors treating you to predict. Everyone is different in their diagnosis and their response to treatments. For me I tried to focus on the fact that I was doing everything I could to prevent my cancer returning.
A performance indicator of 0 is not something that I have come across. However one of the nurses on the Support Line may be able to explain. If not you could ask your CNS/GP to explain.
Hope this helps a bit. I wish you well with your treatment and if there is anything else you need, then please do ask.
Jane
I remember struggling with how quickly something can seem to come out of the blue and turn life upside down for a while. I felt a whole range of emotions but it took time to process everything.
My cancer also was of a rarer type and aggressive and prognosis not so great compared to other endometrial cancers. So although I was able to get support from the womb forum there weren't many that had my type. However there were similarities in treatment and also in experiences. It may be worth joining the Oesophageal group as well- or just to have a look- as they may share some of the experiences- particularly with treatment.
(+) Oesophageal cancer forum | Macmillan Online Community
There may also be some info here.
Rare cancers | Macmillan Cancer Support
There is also this charity which may be of interest.
Home - Neuroendocrine Cancer UK
Jane
