Hi Lampwork54. Hope you are doing ok.   Yes, I've found the dry mouth the most upsetting and frustrating of the side effects. I have got a little more saliva back over the last few weeks, but I find I eat a few mouthfuls and then the saliva seems to stop. I've lost about 7 kilograms since diagnosis and I am still supplementing my diet with meal replacement drinks. I also keep getting attacks of oral Thrush. I sometimes get a bit depressed about it. One of the main pleasures of life is eating and I feel the cancer and treatment has taken that away from me. The doctors have told me it "may" improve over the next few months/years, so I'm still hopeful. My taste has improved enormously since I finished treatment. I reckon I've got about 75% of it back. Tasting sweet things is still not great though. I've discovered sucking on "Sula Mint Humbugs" to be a life saver. They really help to keep my mouth moist and saves me having to carry water everywhere. They are sugar free and my supermarket sells them in the sweets aisle. I have to be careful though, eating too many can have a laxative effect!!   Chris   ... View more

I forgot to say. The radiotherapy destroyed most of my beard! I can shave in no time at all now! There is an "up" side to everything!! 😄 ... View more

Hi Archie, So sorry to read about your diagnosis. You should find lots of help and advice on this forum but remember that everyone is different and try not to compare yourself to how others have reacted to the treatment. You haven't said how old you are or where the ACC has affected you. Mine was on the Parotid gland on the left side of my head and neck. I had surgery to completely remove the gland in August followed by 6 weeks of radiotherapy. I surprised myself with how well I coped with the radiotherapy. I had an hour's drive to the hospital and back but I managed it ok. After each treatment I covered the skin on my face and neck with "Calendula Cream" and apart from some soreness my skin was ok. They will secure you to the bed with a mesh mask so you cannot move. Ask them to cut eye holes in the mask if you feel claustrophobic, I found that helped. I finished the radiotherapy 9 weeks ago and the most upsetting side effects for me is reduced taste, a dry mouth due to reduced saliva, soreness inside the mouth, and recurrent ear infections. All these things might improve in time, no-one including the doctors know for sure. Unfortunately the head and neck is one of the worst places to have radiotherapy. My appetite is not great partially because of the taste and mouth problems so I supplement my diet with meal replacement drinks. I've lost about 7 kilos but as I was overweight to begin with I'm not too worried yet. The hospital nutritionist nags me to eat more, I feel like telling her she should try to eat when you have very little saliva and taste, it's not easy!! I now have 5 years of regular check ups. For the first year it's once a month and gets less frequent in the years after. Like anyone who has had cancer I live with the fear of it recurring. The one "good" thing about ACC is that it is "usually" a very slow growing cancer and sufferers can live a long time with it. I am 66 and I will be satisfied if I can make it to 80.  All the best and keep us informed. If you have any questions don't hesitate to ask.   Chris ... View more

Hi June. I looked up your cancer grading/staging and it looks good to me as cancer goes. "Small, low-grade cancer, no metastasis, no spread to regional lymph nodes, cancer completely removed, resection material seen by pathologist: pT1 pN0 M0 R0 G1"   Chris ... View more

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   ... View more

Also it does annoy me how so many doctors dismiss these lumps on the salivary glands as "harmless" and "nothing to worry about". It is true that 80% of these lumps are benign, but so are 80% of lumps found in the breast and they appear to be investigated much more thoroughly. ... View more

Hi MM, Welcome to the forum and I am so sorry you have this disease. Most of us have spent time Googling and crying so you are not alone. Unfortunately ACC is a very rare cancer and not a great deal is known about it. You've probably already been told there is no chemo, so surgery followed by radiotherapy is the only treatment.  A "T1" is good, it means the tumour was small. The mask takes about 15 minutes to make. Ask them to cut out holes for your eyes. They will automatically make a hole for your nose. The radiotherapy should commence a week or two later. If you search this site for "Living With ACC" you will find lots of helpful information and personal stories that may help you. I'm not going to tell you "not to worry"  and "stay strong" because I don't think it always helps. You will probably experience a multitude of emotions. The usual ones being "shock, disbelief, anger, depression, and finally acceptance". I have read the forums on ACC and I have taken comfort that many people are around years later after diagnoses. It tends to be a slow growing cancer and even if it returns after treatment people can live with it for many years. I had a "T3" tumour on the Parotid gland, which is a big saliva gland just under the ear. The reason my tumour was larger is because it was mis-diagnosed for 4 years. I had surgery to remove it and I am now 2 weeks into 6 weeks of radiotherapy. The only side effect I have so far is a dry sore mouth and throat, which is common.  As far as your holiday is concerned I would ask your doctor. You will probably have 6 weeks of radiotherapy (that is everyday except weekends) and there is no way of knowing how you will react to it. Some people have bad side effects and some only mild. Please keep us informed and I wish you all the best. Don't give up and take it a day at a time. Chris (age 65, living in the UK, ACC on the Parotid).   ... View more

Hi MM. I live in the UK so the time difference makes it difficult for me to reply immediately. I'm just leaving for my daily radiotherapy. I will send you a more detailed reply later today. I know exactly how you feel.  Chris  ... View more

Thank you Lampwork54. I will keep you updated. Please do the same.  ... View more

Hi Lampwork54. My word, you have been through it! People have told me that life gets easier when you get older. It's not true is it? Thank you for all your help and advice. I really appreciate it. I'm still in a lot of pain and discomfort from the teeth extractions, and Ibuprofen and Paracetamol and salt mouthwashes are a big part of my daily routine!! On Wednesday I am having the plastic radiotherapy mask fitted and on Thursday another CT scan on my neck so they can work out where exactly to zap me. The hospital is an hour's drive from where I live so I'm hoping my little old car can take the strain for the next few weeks! ... View more