adenoid cystic carcinoma

[Lampwork54]

Hi Chris,

I don't think life gets easier as we get older.  I think we have more to juggle but are better at juggling it.  

I hope your mouth gets better soon.   I always wanted to be independent when I had appointments and I was up until Radiotherapy.  My husband decided to drive me into the hospital which is also an hour away from us.  He  would not let me do it myself.  I let him help me because that's what he needed to do and it was good.  All my appoinmtnets have been around the midday time so we wouldn't have to travel in peak hour traffic.  A few times we arrived and the car pak wa full.  I was very grateful that my husband was driving as he could drop me off, circle around until he found a car park.   This week he wanted me to start driving myself.  I couldn't .  Somehow I'd lost all confidence in my ability to find a car park and not stress out over it.  He's driving me in and I have to get a taxi home which is fine.  Probably best to start out how you mean to finish.  Much easier.  

I certinaly hope your car makes the trip each day.  May the car parks be empty and you can choose whichever one you wish to park in.  

Yes, do update us on how it all goes.  I wish you every success, limitless patience and stamina to get through what lies ahead.  

[chrisuk]

Thank you Lampwork54.

I will keep you updated. Please do the same. 

[SILLY]

To Lampwork54 and Chrisuk

It is terrifying when you are diagnosed with this cancer and it was for me too but intetracting with others with the same cancer has greatly helped me . Stay on this site but if you wish to join ACC sites too contact me . The one you found on Facebook was not one known to me and thinking back I think that ACC  there stood for something altogether different , not even cancer . If you become my friend here I'll give you my email address . 

Silly 

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@SILLY wrote:
I was diagnosed with ACC in February ,2010.The tumour was in my nasal cavity,lacrimal duct and lacrimal sac.It was stage 3 cancer .I had surgery in April and imrt in June and July. An MRI in December showed no sign of cancer. There are surgery and radiation side effects. This cancer is rare and to have it where I did is even more rare.I know not many Australians have it but still there may be one using this site. I would be glad to talk here to anyone with this cancer.

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[SILLY]

I can't work out how to send you both a private message as I used to be able to do here as things have changed since I last did so but if you can figure out how to send me one we can go from there . 

[Lampwork54]

Sorry Silly,

Can't work out how to send a private message either.   Does anyone else know?

[MM]

Hi Lampworks and Silly et al,

I have just been diagnosed with ACC and have spent alot of time crying and googling, none of the information seems positive except for 'slow growing'. I have had my submanibular gland removed and lymph nodes in the area. There was no cancer in the nodes and there was a small margin around the tumor. I think that makes it T1. I have been told radiology and a PET scan for baseline information but looking at your notes I see they may also be checking it hasn't ended up on my lungs or elsewhere in my body. Do you know how long it takes to make the mask and get the radiation started. I am to go to a clinic where my case is discussed among many doctors and then someone is allocated to my case. I'm in Northern Sydney if you have any specialists familiar with ACC you would recommend. I am meant to be going on holidays mid December and am hoping that will still happen but the waiting between tests, operation etc. has been long and drawn out...only by weeks not years fortunately. I had the lump close to a year I would think, GP wasn't particularly worried...Life has really thrown me a curve ball, I am a fit 56 year old female and just can't get my head around all of this. Any advice gratefully received.

[chrisuk]

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 

[chrisuk]

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).

[chrisuk]

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.

[MM]

Thanks ChrisUK

good to hear you are going okay and thanks for the heads up on the mask, having it fitted next Thursday I think but have to get through the PET scan and see radiation specialist before then. Hoping the scan is just a baseline and nothing further found. Will keep in touch.