adenoid cystic carcinoma

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Re: adenoid cystic carcinoma

So sorry about your diagnosis MM.  It is an absolute curve ball.  To be diagnosed within a year is really good and T1 is an excellent result.  You've already gone through the surgery which must have been rough.  I found the radiotherapy ok but daunting to have 30 sessions and attending every day.  I am 2/52 post radiotherapy and feeling good.  Everyone warned me that the worst was to come in the few weeks after radiotherapy.  It hasn't been too bad.  Mouth seems a bit stiffer and uncomfortable this week.  My neck is healing but it has taken longer than I thought for the radiation burn to work its way through the skin.  Almost there though.  PET scan is good to make sure you have no metastases which you probably won't seeing you were diagnosed in a reasonable time frame.  

 

I thought I was fit and healthy  and doing most of the right things.  Just retired.  It's a bit of a slap in the face to be diagnosed and makes you question everything.  I have no appetite at the moment and no taste buds.  I'm completely disinterested in food and am happy about it as I don't have to second guess everything.  I wonder if this is how my mouth and jaw will always feel now.  If it is -  Yikes!  I don't like it at all.  

 

Things will slowly work out.  Patience is not a virtue I actually possess but hopefully you are good at it.  There are good stories out there about this diagnosis and quite a bit of information.  Keep googling but only use reputable sites.  There's lots of good advice in the endometrial cancer thread.  Might help you.  

 

I wish you success, good fortune and luck throughout the course.  Keep in touch and let us know how you are doing.  

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Re: adenoid cystic carcinoma

Hi MM,

 

Forgot to say that I'm in Victoria so don't know any specialists in Sydney but am sure there are plenty of them.

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Re: adenoid cystic carcinoma

To MM

There are recommended doctors for you on the ACCOI  page on Facebook . You need to go there and you will find much information on ACC . It is a public group . There are other ACC  groups on Facebook , some only for those with this cancer and some for friends and family as well as for you. Some groups are private so only members see posts there . 

 

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Re: adenoid cystic carcinoma

Thanks all and apologies for not responding earlier. Have just started radiation, day 3 and will see how I go...fingers and toes crossed. Appreciate all your responses..

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Occasional Contributor

Re: adenoid cystic carcinoma

Hi Lampworks and Silly,

 

I am 40 yrs old and I was diagnosed with ACC yesterday. Its a devastated time to me, as long as I think of my 2 lovely boys, 4&6, I am feeling so sad for them, because they will have no mum, when I think of my husband, sooner he will be alone to raise up our boys all by himself, I'm so worried.I cried and couldn't fall in sleep on last night. I had a lump on my parodic side, last Wednesday I had a surgery to remove this lump, but because the doctor didn't consider its a cancer, so the removed margin area still has tumour. So on this Wednesday I will have my 2nd surgery to remove more. On Tuesday I will have a PET scan, I guess they want to see if in my body have more tumour. I don't know what shall I do, I cannot pretend to be strong. Could you please recommend any good doctor in Melbourne? I am currently seeing Dr Ben Dixon in Epworth hospital. And could you please pull me to the ACC group on Facebook? 

Many thanks. 

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Occasional Contributor

Re: adenoid cystic carcinoma

I don't know how long of my life is left. I am so scared and frustrated. My email is xy_chu@hotmail.com If anybody would like to share more please email me. Many thanks. 

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Contributor

Re: adenoid cystic carcinoma

Hi June.

My name is Chris. I'm 65 years old and from the UK.

I too discovered I had the same cancer in my Parotid gland after surgery earlier this year. It is a very rare cancer and there is no Chemo for it. It can affect anyone of any age and the cause is unknown. It is not linked to smoking either. Like you I thought my life was over.

The good news is that it tends to be a very slow growing cancer and lots of people have lived a long time with it. If you can please let us know the staging of the cancer. It's usually something like "T2 M0 N0".

The usual course of treatment is surgery to remove as much of the tumour as possible. This will be followed by 6 weeks of radiotherapy. Sometimes they advise you to have some back teeth removed before the radiotherapy begins as a precaution. Yes I know that sounds terrifying. But you will get through it. You will probably need someone to take care of the children while you attend hospital each day. The treatment takes about 10 minutes, so depending how far away the hospital is it doesn't take the whole day. You will have the weekends off. The doctors will tell you all the awful things the radiotherapy will do to you. Remember that everyone is different and some of the side effects might not be too bad for you. I finished my 6 weeks of radiotherapy today. I've got "dry mouth" which happens when you stop producing saliva. I have lost my sense of taste and my mouth is sore. I have sore skin on one side of my face and neck. All these things are normal and usually improve in the weeks after the treatment has finished. I have found it too unpleasant to eat since the 3rd week of my treatment and have been surviving on meal replacement drinks which the hospital will give you. But lots of people are able to eat some food all through the treatment. Just try and take it one day at a time.

I was told the lump on my Parotid was harmless for 4 years until another doctor advised me to have it removed. 2 weeks after the surgery I was told it was an Adenoid Cystic Carcinoma" or ACC. Like you I was in total shock and disbelief. Later I became angry, and then depressed, and finally acceptance. These emotions are quite normal and you will probably have them.

I know there is nothing anyone can say to make you feel better. Please keep posting on this forum and keep us updated. I am happy to give you as much help and advice as I can.

In the UK there is another forum you might want to look at. It is Macmillan Cancer Support Online Community. Search the the site for Head and Neck cancer.

Chris x

 

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Re: adenoid cystic carcinoma

Hi June,

I'm really sorry about your diagnosis.  It is a shock.  It is terrible news and it throws your world out of balance completely.  The worst part is our fear for our families and how this effects our parter and children.  

 

However, you have to find balance and hope.  I looked for survival stories and good research on the tumour.  This helped.  Staying strong and being as physically fit as you can be to prepare for surgery is important.  Try an olive leaf tablet every day as this will boost your immune system which is compromised right now.  Lots of juices and smoothies.  Marinate ginger cut up and soaked with boiling water.   Use the cooled liquid the next day and sip it often.  It will restore your emotional balance and also has other wondrous effects.  (Look it up).  Look for happiness right now.  Find things that make you happy.  When I looked for happiness during the pre surgery days, the only thing that could make me happier was another dog.  As I already had two dogs, there was nothing I needed to make me happier.  I had it all as you probably do as well.  Enjoy what you have and be happy about it.  

 

ACC is not a death sentence.  Yes, it is terrifying.  The scary fact about the tumour is that it will come back.  There is no if.  It may not come back for 15 years.  Hopefully the surgery this time will give you clear margins at biopsy.  That would be a great outcome for you and it is possible.  My surgeon told me he thinks he got me a "cure" as the margins were clear.  I'm not sure I believe that but some days I tell myself that.  Maybe he's right.  I was T2M0N0 so that is a great outcome.  

 

I'm about 5 weeks post radiotherapy.  My mouth is dry, dry, dry, no taste buds, no appetite and the mouth feels stiff and very uncomfortable.  I am hoping that this improves as it is easy to go without eating at all and that's not good but i'm finding it harder and harder to force myself to eat.  I have to drink constantly or suck on a lolly to keep my mouth manageable.  Mouth washes that are for dry mouths are good too.  It's not painful so there's nothing I can take to make it feel better.  

 

If you are going to Epworth hospital I'm sure you have excellent professionals looking after you.  I could recommend my surgeon and the Alfred Hospital but there in Dandenong and Prahran.  Ask the questions at the Epworth.  Do they think you would be better off at the Peter MacCallum?  It's hard to know but whoever you have - you need to feel confident in their skills, experience and ability.  That will help greatly when it is time to give yourself over to them for the surgery.  I was scared silly about the surgery until I kept telling myself that these people - this team - surgeons, plastic surgeons, anaesthetists - were absolutely the best team I could ask for and that I could trust them to give me the best outcome which they did.

 

Good luck.  It's a glib saying.  I wish you strength, courage and positivity to get through what lays ahead.  Lt me know if you would like to stay in contact and I'll email you my mobile number.  

 

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Re: adenoid cystic carcinoma

Lampworks54 

You cannot find most of the groups for ACC through a search as they are secret simply for privacy . The Australian group is one such group I think. There are also groups for friends and family members but these are international . To join the private groups you need to do so through a member or the administrator of that group . 

If you send me a friend request I can ask for you to be added to the group as I can verify that you have been diagnosed with this cancer . 

 

Sylvia Farry 

 

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Re: adenoid cystic carcinoma

I didn't like placing my name here but I cannot work out how to contact you privately on this site . 

 

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