Hi there, it’s 5:00 and so 5 hours sleep. I consider this ok given the situation. I’m very confused at the moment and don’t know whether to feel happy, sad, frightened. The truth is it is a mixture of all of it, and pretty exhausting.
I went for a check up to see what a lump on the side of my neck was in March, absolutely positive that it was a reaction to my C19 jab 3 days earlier.
An ultrasound and then biopsy shocked me hearing that it was a non differentiated neuroendrocine tumour. My world of course fell apart that night and it has been a very difficult three months.
A CTScan, on my chest and abdomen areas and then an MRI scan on my neck and head have showed that (as far as is possible to know) there is no sign of a spread of the cancer to other parts of my body.
During this time, strangely, the lump in my neck has also dissipated to the point where it could no longer be felt by my wonderful Cancer doctor MTD team members. I think they are perplexed in trying to understand what the heck is going on and what to do. Apparently the results of the biopsies were rechecked with same diagnosis.
The course of action was agreed as a neck dissection in the area of the original ultrasound and biopsy diagnosis, removing tissue and the lymph nodes in that area. I had this procedure 5 days ago and am now recovering. My neck is sore, bruised, numb and I am having some difficulty with the nerves around my mouth that shape my speech but I understand this should adjust fine over the next couple of weeks.
The surgeon and team have said to me that they could not ‘see’ anything of particular concern that clearly showed cancer, and now I am awaiting the results from Pathology for whatever is taken away. This should happen in next 2 weeks.
I remain frightened, anxious, devastated at having to deal with this, but at the same time I’m trying to be positive and even optimistic.
I’m 68, fit snd pretty healthy. Given that NET is a somewhat slow growing type of cancer I’m perhaps unwisely (?) hoping that this ‘removal’ and ‘all clear’ on any spread might be something to be optimistic about.
I would love to get anybody’s feedback please.
it has been a tonic just to write this. My wife and I have two wonderful children and four grandchildren but we can see the sense of telling them any of this.
terry
Hi jokester Terry. I’d like to offer you a warm welcome to the Macmillan Online Community. I’m sorry to read about your diagnosis but you’ve come to the right place to talk to other people who are in the same situation and help you get through this. I can truly empathise with laying wide awake after just a few hours sleep tossing, turning and worrying. We all agree on here the waiting for histology results is truly debilitating.
You're right though, to write this post and get it off your chest is a tonic. I wouldn't have coped as well without the support of the members of my forum - I'd never used a forum in my life before!
My cancer is different, but a cancer diagnosis of any kind makes us ask lots of questions, causes confusion, stress and probably emotions we’ve never experienced before. The Macmillan Community is organised into dedicated support hubs. I see you’ve joined our Neuroendocrine cancer group, this will be a good place to connect with others making the same type of cancer journey.
The Macmillan Support Services also offer lots of information, support, financial guidance or just someone to listen. It’s free to call 0808 808 0000. Most services are available 8am to 8pm, 7 days a week. Have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two to three working days for replies from our expert team.
Sending you welcoming hugs B xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
"Never lose hope. Storms make people stronger and never last forever” - Roy T Bennett
Hi Terry jokester
I have NET also but mine originates in my pancreas, unfortunately it is metastatic and spread to multiple parts of my body. I have been given a terminal diagnosis, im 42 with 3 children.
My dad had thyroid cancer which was removed successfully many years ago. It hadn't spread anywhere else and he made a full recovery.
I would say, definitely stay optimistic and positive, dwelling on what may or may not be takes away precious time and energy! Live each day for yourself and family because at the end of the day you never know what is around the corner.
I totally understand the fluctuating emotions!! One minute you can be smiling the next you could be on edge and worrying then 10mins later you could crying! This is all perfectly normal and healthy. Just express your feelings how you feel comfortable.
Im here for a chat if you have any questions 
