Hi everyone
In December, 2024 I Waa diagnosed with Alfactory neuroblastoma at the age of 39. 2 years before diagnosis I was suffering from this regular nose bleeds that GP was thinking that is nothing serious and is probably some blood vessels that were burst because of a cold or a flu that I might have had. Apart from the nose bleed I didn't have any other symptoms and I was generally feeling well and all blood tests came back normal (even now) But then I started feeling really unwell 3-4 months before diagnosis. I kept telling to my mum that I am not myself anymore, I don't have the same energy, I feel abit dizzy, a bit sick. GP still didn't take things serious so I decided to go private and be seen by a ENT specialist. That's when he checked inside my nose with a camera and said "well I can see the cause of the bleeding but to have a more clear picture we need to do a MRI of head and neck". The result of MRI showed a tumore at the back of my nose as big as 3.5cm X 1.5. So they decided to do a biopsy, however, during the operation the surgeon removed all the tumor and sent it to pathology and result came back as this type of cancer. They sent me for another mri of head and neck and ct scan of chest and abdomen for staging. Luckily, the scans didn't show anything and all the tumor was removed during the operation, however, the team decided that I have to do 30 sessions of radiotherapy in case if there arr some cancerous cells left in the surrounding area. I have currently finished week 4 and 2 more weeks left. I still don't feel normal and have some questions from the people who have gone through all these and wondering if their symptoms or how they feel is the same as mine. As I keep complaining to doctors that I feel like there is a magnet in the centre of my face and pulling my nose and corner of my eyes and the bones under my eyes in but they keep saying that nothing to do with this and even if there are some cancerous cells still left it wouldn't give you this feeling. I was wondering if anyone else feels the same?
I had this feeling before ethe surgery and even now that is 4 months after the surgery and during the radiotherapy treatment. I am going crazy as they keep saying that this has git nothing to do with it but I don't feel normal.
Hi Moannaaaa
I see you've tagged your story onto an old thread but I though I'd reply here to at least say hi
Have you a Maggie's near you. They are brilliant with their personal help and support. You can drop in any time.
I have found a neuroblastoma group online but it seems to be dealing just with children.
Maybe you could ask your oncologist if they know of any support groups too
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Good evening Moannnaaa. i don't know anything about this cancer, as it is not very common on this forum. i would wait until the treatment has finished, as it could well be the side effects of the treatment causing this feeling. I'm sure once you have completed treatment, they will do further scans to rule out anything sinister. Sorry, i cannot be of much help. Wishing you all the best, take care.
Chris x
Its sometimes not easy but its worth it !
I can share my experience with you over the phone if you want.
I think by private message would be better. Send Moannaaaa a friend request and when she accepts you can message each other. Click on her name and then on the plus sign in the top right hand corner of your screen. This brings down a drop menu with request friendship as one of the options.
Please do not share phone numbers on open forum.
How are you doing YC Tan ?
It's such a rare condition it would be good to hear from folk who have had treatment for it.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
