adenoid cystic carcinoma

[SILLY]

I have sent you a message .

[VictoriaS]

Hi Silly, thanks for making contact. I was diagnosed with ACC in November after a biopsy in late October I think I had four days to process what was happening and my surgery came an went and they had to remove my entire eye the works!! Very angry because I have no answer as to Why? How ? My tumour was 30mm x 15mm in my lacrimal gland, for almost 5 years I had pain in my crease of my eyelid and at times my eyelid would droop I had sharp shooting pains and shocking migraines but these symptoms progressively became worse early in 2013. I had my surgery on Nov 27, I am adjusting slowly to monocular vision which is more daunting than I thought but getting there, I also have 3 kids under 12 and I am only 37 years old! So much for old persons cancer. I am interested in all that have been diagnosed with this cancer to see if there is a common theme amongst us all that may be a trigger ?? I was a energy drink junkie 3-4 cans of V a day for about 4 years, that's the only thing different that I was doing !!! Staying positive because I choose Life 🙂

[mannagum]

Can I ask without offending, are any of you people with Adenoid Cystic Carcinoma still on here???

[mannagum]

Also VictoriaS. I am also a V junkie. I drink at least a four pack a day. I have wondered myself if that had anything to do with my cancer. I remember a tingling sensation in the lump on the roof of my mouth every time I drank it

[Bessyh]

Hi Mannagum, I'm still around 🙂 feel free to send me a message if you want. Have you been diognosed with ACC?

[SILLY]

Hi Mannagum and Victoria , I haven't been on this site for quite a while . ACC  has not been linked to any lifestyle habits . Many people whom I 've met in ACC groups have tried to find what they have in common with others which may be the cause of this cancer . Truly I've never asked why but believe it's a combination of factors which varies in individuals . 

[Katekat]

Welcome back @SILLY, we'd love to see more of you when you're able 

[Lampwork54]

Hi,  I was diagnosed with Adenoid Cystic Carcinoma of the left submandibular gland in May this year.  I'd had a fine needle biopsy done which was extremely painful.  The diagnosis came back as benign adenoma.  The ENT doctor sent me to a surgeon who looked at the biopsy result and felt it was suspicous and posibbly cancer.  I was horrified with the surgeon.  No, my blood tests were good.  I couldn't possibly have cancer!  I had to wait 2 weeks for a cone biopsy.  I couldn't have an MRI as I'd had a cerebral aneurysm clipped in 1984.  I didn't tell me family as it would cause them unnecessary stress.  I took a taxi in for the cone biopsy.  Doctor who did it said he had heard I'd had a really hard time with the fine needle biopsy so was going to give me seven local anaesthetics around the gland and it would be pain free.  It wasn't.  Again it was excruciatingly painful.  I cried through the whole thing, cried paying the bill and cried all the way home in the taxi.  I still didn't tell me family and wore a scarf for a few days until the swelling had eased.  The surgeon went on holidays for a week so it was about 10 days before I received my diagnosis.  He was terribly sorry.  I was terribly shocked because  I had convinced myself he was wrong.  I told him not to be sorry.  Not his fault and lucky he had pushed for the cone biopsy because that had given me an early diagnosis and a better chance of survival.  I had been extremely fortunate 35 years early surviving the aneurysm which was congenital (present from birth).   Every day since has been a privilege and a blessing.  I had to have a CT scan of chest asap to rule out lung metastases.  I had to fill in a form at the x-ray place and there was a box to tick if you had a history of cancer.  I refused to tick that box.  I told the Radiologist I could not tick it as I did not have a history as I'd only been diagnosed that day!!  It was clear.  I had told my husband the night before that I had an appointment with the surgeon.  He asked me to text the result to him as he'd be having a busy day.   I could not text him that infoormation so told him "all good".  I then contacted my 4 children who are a in their 30's and 40's to meet at my house around 4.00p.m. that day.  My husband came home early too.  I told them the diagnosis.  Aggressive.  Metastasises quickly. Rare.  No chemotheray for it.  Only surgery and radiation.  Will recur.  Only a 40% survival rate to 15 years.  Only known causes asbestos and heavy metal.  Neither made sense.  Really hard news to give your family.  

Surgery was completed on 10th July, 2019 so am still recovering.  Did not lose my voice box which is great.  Extremely good outcome with pathology showing clear boundaries and all glands taken out (6) clear.  Surgery was through bottom gum and front of neck.  I'm wondering as this cancer spreads through the nervous system, whether other people had trouble with pain relief.  I only just today have good pain relief using something for nerve pain.  Everything before that - Oxycontin, valium, paracetamol - did nothing.   I start Radiotherapy later this week and am a bit scared as my scars are still healing.  Tracheostomy as mouth and tongue would swell and make breathing difficult.  Naso Gastric tube for feeding whilst in hospital and soft diet now as mouth very painful.  I've never had a V drink.  I've never liked milk or yoghurt.  Am not a coffee drinker as don't like the taste.  Don't think I've been around asbestos.  Not sure where heavy metal would come into my life.  Not an alcohol drinker either.  Always ate really healthy, free range and organic.  Have done Tai Chi for past 20 years.  Surgeon said there was nothing I had done to cause this because I think we always look at ourselves first as to why this has happened to us.  I guess it's the luck of the draw.  

Despite everything, I am very grateful to my Surgeons, ENT doctors and Plastic Surgeons for the great job they did.  My mouth is a little skewed to one side and I have numbness along one side of  tongue and cheek.  They were expected side afffects of the surgery.  The fear and anxiety have slowly calmed down.  Surgeon said things are about to get much worse with Radiotherapy.  I am trying to keep myself positive and hopeful.  So far I will be having 2-3 monthly reviews for a few years to check for any metastases or recurrences.  This will be extended over time if all goes well.  

[SILLY]

Hi Lampworks 

Firstly I'm sorry you have been diagnosed with this cancer . It must have been devastating in the beginning . It's a rare cancer and much of what you hear may paint a bleak picture of the future but the experience is different for each of us in some ways . 

I was diagnosed with ACC in February, 2010  and at that time read everything I could by googling and it was scary . I wasn't positive about the future but I began to feel better after finding other online groups and meeting others later who had/ have the same cancer. My surgery was probably worse for me than my radiation but I found out that others were worse off . So far I've had no recurrence or metasteses and consider myself fairly healthy . 

Don't become too frightened by what you read or hear about this cancer because there's no way of knowing how long you can survive it . I know of one lady, an American,  who has survived at least 47 years the last time I heard  from her . Others have survived many years too . 

There is an Australian group for those with this cancer . They have   a Facebook page and they  meet up once a year for a weekend conference . This year's meet up is in late August in Sydney . It's been in Brisbane , Melbourne, Sydney or the Gold Coast in the past

. 

You asked about pain relief . I take Lyrica for nerve pain caused from my surgery . It has helped me but I never got it until 3 months after my surgery because my ENT  didn't believe I had nerve pain. Other than that he was great . 

If you are interested in joining the Facebook group please let me know . 

[Lampwork54]

Thanks SILLY.  I'm already reassured because you were dignosed in 2010 and are still around to tell the tale.  That gives me hope.  I've gone back to GP today after three terrible days of nerve pain.  I have Endep as I was already on it at night and now have a couple of different doses for throughout the day which has helped.  Oxycotin, valium and most other pain medications have not given me relief.  Much better today.  

I have a Masters in research so the first thing I did was look up and read about the disease as much as possible.  I would have loved to have had immunotherapy as it is very powerful and not painful for you at all.  As I'm T2 I won't qualify for a clinical trial in Melbourne.  I think recovering from the surgery has been difficult enough.  The Surgeon told me a few days ago that Radiotherapy will make everything much worse.  Definitely not looking forward to that.  Do you have any recommendations whilst completing Radiotherapy especially to mouth and neck area?

Yes, I would like to join a Facebook group and tried one but have not been accepted yet.  Is this the one you mean? https://www.facebook.com/groups/169026466470687/