adenoid cystic carcinoma

[Lampwork54]

Hi Archie,

I'm really sorry about your diagnosis.   I know it's terrible news and it takes a while for it all to sink in.   It sounds as if you've already had your surgery.  What was the site of your ACC? If you've had surgery, what hospital and where will you be having your radiotherapy?  What are your side effects?  

[SILLY]

Archie, 

Let us know how you are going . 

[chrisuk]

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

[chrisuk]

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!! 😄

[archie]

I am 76, and am usually fairy fit. My ACC was in the submandibular gland, left side. At first it was considered to be contained,  but when the results came back it had spread . Off to the Oncologist week after next. At this stage I understand 6 weeks of radiotherapy 5 days a week. 

[Lampwork54]

Hi Archie, Chris and all,

Archie my tumour was also in the left submandibular gland.   Chris I'm really glad y made it through all your treatment  I'm in the same boat as you with dry mouth (meaning constantly dry to the point everything sticks together), lack of appetite and taste.  I've found it almost impossible to eat without an appetite.  I make myself eat at least once per day.  I was sucking on English toffee lollies for months.  A few packets per day as it helped keep my mouth lubricated.  I recently read the ingredients on the packet and stopped buying them straight away.  I'll have to find something else.  They have about 5 different types of sugar in them, cream and whey powder.  No wonder my weight wasn't dropping at all.  I will give a packet to my surgeon and tell him to recommend for those who lose weight too fast and dramatically.  Chris do you worry that your mouth will be like that forever?  I do and I think it's difficult.  It's hard to explain but I find it incredible uncomfortable.  Not painful at all just continuously uncomfortable, dry stiff and numb in parts.  

Archie what state are you in?  Good luck with your radiotherapy.  It is a long and tedious process but necessary.   I never enjoyed weekends so much before until throughout the treatment.  You will get through it and the people involved are usually wonderfully kind.  

[chrisuk]

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

[archie]

Chrisuk you say you have checkups on a regular basis. What do these checkups involve?

The Oncologist that have to see in about 10 days time is 4 hours away by train each way. One good thing is the train is paid for and covers myself and an escort, and if we have to stopover the night cost is close on fully covered. 
I don’t know, as yet, where the radiotherapy will be at. We are hoping it will be at a nearby Unit, that is only 35 minutes by car from home, not 4 hours by train.

I am really trying to remain upbeat about all of this darned cancer thing, and I feel that I am getting there. All I need is the missus, our two small doggies and my music collection for me stay cool calm and collected, 

[chrisuk]

Hi Archie,

The regular check ups I have just started are not that involved. They just ask me how I am and have a feel of my neck.

I will have to go once a month for the first year, and then for the next 4 years the appointments will become less frequent.  Now that the surgery and radiotherapy is over it's "fingers crossed" time as it is with any cancer I guess.

All the best

Chris

[archie]

Thanks chrisuk. This last 6-8 weeks has been numerous scans etc, meetings, surgery, train and car journeys, (with more to come next week.) Doctors consults. 
Today has been a real kick back, relax day, with lots of attention from our two small dogs. I only have to look like I am going to get out of my arm chair and the “girls” are down on the floor to go with me where ever I go.  It has been the most relaxing day I have had over the last few months.

“Me time” is great!