THE ORPHAN CANCER 'ADENOID CYSTIC CARCINOMA'

It was 2002, i was standing cooking the evening meal at the cooker, i felt this 'lump' on the under side of my jaw(left side)

Well they say any lumps go see your g.p. . As i did a few days later, he felt the lump \"oh its just a gland, dont worry about it\".....well he's the man so i went away and didnt worry about it. It ached sometimes, and i got quite a bit of earache but thought nothing of it. Twelves months down the line and it was still there but the pain was starting to feel like i had been kicked on the throat by a mule!!

2003 i went back to my g.p., this time i saw the lady doctor, she felt the lump and said it needed investigating. I was refered to the e.n.t dept where they sent me for a biopsy straight away, they done 2 one after the other because they said they hadnt got enough...of whatever it was they wanted!!

Next day i got a phone call asking me to go back as they needed to do a scan on my neck. Alarm bells rang when i saw how many people in white coats where in the room, they done the scan and asked me if they could do another biopsy, here we go again i thought, so i held tight and let them proceed, i nearly went through the ceiling.i made a hasty get, and jokingly said i hoped i didnt have to see them again!!

A week or so later i was sent for, they told me that they werent sure what the lump was but it had to come out and that i would have to have surgery,still oblivious to what was to come!

I went into hospital on the 12 june 2003, and had my op the next day.....friday the 13th...of all days!!!!

During all this going on my dad had been taken into hospital, and up until my op i had been looking after my mum who suffered with dementia, with me going into hospital i had to take my mum to a care home close by my home as she couldnt be left to look after herself. I was discharged on the sunday the 15th....it was fathers day, my husband took me straight to the hospital where my dad was, so i could give him his fathers day card and prezzie. He asked me what the hospital had said about the lump, i said it all went well and nothing to worry about,....he punched the air with his fist and said that he was so pleased it wasnt anything serious.

On the 19th june 4 days later......my dad passed away.....i was beside myself....

I had to go back to the hospital the day before my dads funeral for the results of what the 'lump' was. Only to hear the words that none of us wants to hear..\"the lump was cancerous\".... It was adenoid cystic carcinoma ......it meant nothing to me at that time.....(but words i would become very familiar with) .the only thing i thought of was my dad punching the air with delight when i told him my op had gone well!!

A good few weeks later not sure of the dates it all seemed a hazy blur at the time i started 6 weeks radiotherapy, in the meantime my mum was still in the care home as it was impossible to go for my treatment and look after her, she couldnt even grasp that my dad had died, she thought he had gone for a pint!!!Funny though she would cup my face in her hands and look at the scar on my neck and look into my face and say\"your going to be alright you know\"....must be one of those 'mum' things that even with dementia you still know when your baby's hurting, but as quick as that lucid moment would come, it was gone again and she was back in her own confused world again.

I finaly finished my treatment,things will get back to a bit of normality now i hoped. A month later i got up one morning and couldnt open my jaw, not even to brush my teeth. I was refered to the maxio facial unit where they informed me i had to have the majority of my teeth removed due to the radiotherapy, but i would first of all have to for 10 days hyperbaric treatment before they extacted the teeth and then for another 20 days after the extractions where done, this apparently helps with the healing process as there is no blood supply to the bone to help the gums heal. I went with no teeth for nearly 12 months before i could be fitted with dentures.

Six years on and i'm still here, get a lot of pain in the back of my neck/shoulder and arm, but i'm told this is all after affect of the radiotherapy, it is unbearable most days but you learn to live with it.

I have asked my consultant how do i know if the adenoid cystic carcinoma may have come back, and he told me you dont, and we dont go looking for it, a pretty scarey thought for me as the patient. I read on the net about people with acc and how they are sent for scans, i have been told there is no point in doing a yearly scan, i would have thought there is every point, even if only to re-asure the patient that it had not returned. I read in the papers everyday something or other about breast cancer awareness, breast cancer fund raising, breast cancer resarch, all manner of celebs promoting breast cancer. What about the 'orphan' cancers that are forgotten about like adenoid cystic carcinoma, and the many other oral cancers. It would seem that those of us who have this battle are the forgotten ones. If my story has gone on a bit(well a lot) i apologise, but i at least for the time it's taken me to write it and the time it's taken you to read it i have made just the smallest bit of awareness of this awful disease and how it's , affect, and its treatment are with the sufferer for ever. And i most whole heartedly hope that one day that orphan cancers are brought to the forefront and are given the same media coverage that other cancer patents are given.

Thank you for taking the time to read this, and wish you all well in your fight with the 'little known orphan' god bless. Julie,x,xx,

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