Mar 30, 2012 - 8:49 am
Hello all - I am 34 years old, from Liverpool in England and have just been diagnosed with cancer this week after many months of tests having strongly suggested otherwise. Bit of a shock but I'm up for the fight!
I had quite an unusual presentation of what will be an oral cancer (of unknown primary) and was wondering if anyone had shared a similar experience?
Just over 7 months ago I had a big lump appear in my neck overnight. I went to the doctor and went through what I'm sure many others went through - antibiotics, blood tests (all normal), ENT investigation (thought cyst), FNA biopsy with ultrasound (inconclusive, dead cells), CT scan (normal), TB test (negative), even a PET scan which hardly lit up at all around my neck (it lit up in my duodenum so I had to have a gastroscopy but it was inflammation due to reflux). All pointed to a branchial cyst it seemed, the lump was mostly fluid.
So they removed it from my neck just over 3 weeks ago, said 'good news its a branchial cyst', packed me off home and scheduled a follow up for 3 weeks later. Then came a worrying phone call two days before the scheduled appointment asking to bring it forward by 2 days after a second opinion had been sought.
It turned out to be a salivery gland tumour which had presented in a very unusual way giving the appearance of a cyst, and is a very rare type which is why it has been missed for so long. So although I had an operation to remove a few weeks ago, it’s more complicated than that unfortunately! This type of cancer is a secondary one, so basically it has moved from somewhere else in my body. From the analysis of the tumour they know it is a salivary gland one so they know the original is somewhere in my mouth, neck or throat – could be on a tonsil, the base of my tongue etc. The problem is it is so small it is hiding even from the PET scan.
The good news is that the reasons it has been so hard to diagnose are it seems to be fairly slow growing (was described as intermediate but the oncologist said they would go for the highest grade and this may be low) and the original cancer is very small wherever it is which makes it more treatable. It also seems is also in an area of the body which tends to me more curable. The doctor described what I have to his knowledge so far as ‘eminently curable’ so I seem to have a really good chance of fighting it. It’s a hell of a sting in the tail having got through so many tests with the all clear, but I’m ready to take it on and looking at it as positively as I can.
I’m sure there must be many people get worse news on how developed their cancer is, the Professor of Oncology gave me a very positive prognosis as things stand.
I have to have an MRI scan within 2 weeks (as it is the only one I haven't had) then he will operate on me on the 23rd April to remove all the other glands on the left side of my neck where the secondary cancer was to ensure it hasn’t spread to them - and my tonsil on that side, as well as doing biopsies of my throat and base of my tongue.
The aim is to try to find the primary cancer so they can treat it and cure it. Apparently there are some very rare cases when the primary never turns up (initial tumour was so small the immune system deals with it, but not before a few cells have escaped) but it seems that is too rare to actually be something to hope for realistically.
So I was wondering if anyone else had been through a similar journey to me? Hoped to have the opportunity to share experiences and understand what lies ahead...
All the best of luck to everyone here. Leo