Any info would be appreciated

pjandmary

I have just been diagnosed with Adenoid Cystic Carcinoma in the roof of my mouth. I can find so little about this cancer and am terrified. Can anyone tell me more about what I am facing. Surgery will be by the end of March followed by 4 to 6 weeks of radiology treatments.

josh r.

There is life...
Pjandmary,
I can't speak to your type of cancer but I can tell you there is life after cancer. You will get honest input from the brothers and sisters on this wonderful website. You need to believe that you will beat this and be a model for others to do the same. I say this having just received today an a-ok no NED after nearly 20 years from original discovery. Know that there will be tough times and that's when to believe the most in a Power greater than yourslf and love those around you and show your strength in doing so. You will surive for many reasons, but your belief may be the main one. Never give up and all the best. Josh r.

ekdennie

some info
I don't have a lot of info to give you regarding your particular type of tumor, but I can offer some other help regarding what to expect with the upcoming surgery. I also had radiation, let me know if you want info about that now, or after your surgery...this is a long note!
Your tumor is rare. I also had a rare tumor on my hard palate. In June 2010 I was diagnosed with Mucoepidermoid Carcinoma of the Hard Palate. Mine had grown into my maxillary sinus and had begun to press on my septum and my upper right jaw. It seemed like forever when I finally went in for my surgery. they wanted to do a PET scan to make sure there was so spread before the surgery and then the ENT needed a special type of CT for the procedure itself. (stereotactic CT...I was told it essentially creates a 3D image that he could then use to visualize the tumor before the surgery and then he could pop it up on the screen during the procedure to aid in the use of his special equipment to help minimize tissue that needed to be removed).
My surgery was in august 2010.
he did most of my surgery through my nose and then he removed the remaining tumor from the roof of my mouth. in order to get clean margins they had to remove quite a bit of tissue, but in the end the hole was smaller than I had expected based on the overall size of the tumor. it was golf ball sized with a piece about the diameter of a quarter visible in my mouth. I was given a surgical obturator (oral prosthetic) to wear until my mouth healed from the surgery. it was held in place for the first two weeks with metal stitches and it fit snug enough that they were removed pretty quickly. I did have to do nasal rinses twice a day. they really helped me to feel better, but it took a while before I had enough strength to do the rinses without a family member in the room and a chair behind me in case I got dizzy.
I have a hole in the roof of my mouth, I have been told that they will not be closing it. post surgery my tumor ended up being of a higher grade than they had initially thought, so I then went to have radiation.
I began radiation in October 2010. I had 30 sessions, every day for six weeks, with the weekends off. I had IMRT radiation, which helped me have less side effects.

I know this time is scary. you don't know what to expect and it feels like nothing will happen fast enough...you have been told cancer and you expect it to be removed the next day, but remember that it is important that you surgeon has time to plan your surgery. for now, focus on enjoying eating what you can, post surgery it might be hard for a while and then post radiation your sense of taste may be off. my children were 4, 2, and 4 months old at the time of my diagnosis, so I focused on healing so that I could get back to being the type of mother I want to be. I wish you good luck with your upcoming surgery. HUGS! we all need them sometimes!

as for information on your tumor. try doing internet searches for salivary gland tumors in addition to google searches for "adenoid cystic carcinoma". oh, and be careful with what you find online...most of what you will read are the very very rare cases, some involve data where you really need to read the fine print (ex. one told me this horrific statistics...but when I read the fine print the people in the study were elderly when the study began...15-20 years later all but one had died of natural causes, but when I read the statistics it just stated that of the 65 participants in the study only 10 were aloof 20 years later...sounded bad, until I read the fine print). In many cases the statistics are not accurate or just really out of date.
feel free to send me a note if you have any questions. I am not on all the time now. as for me and my health I am doing great now. I have some difficulty with my eating...some foods are too dry or hurt going down (from the radiation) and I have to have recent adjustments to my interim obturator...I will get my final one sometime in the next year or so. there is no sign of regrowth as of now, and I am hopeful that it will stay that way. I will be seeing my ENT off and on pretty much until he retires, when I will find someone else. oh, and get a copy of all of your medical records and keep them in one place...I have mine in a binder...take it with you to your appointments, and get copies of your scans on disc to give to your doctors, just in case the radiology place didn't send them like they said they would.

once again, you will be in my thoughts and prayers.

Kaydub

adenoid cystic carcinoma
I too was diagnosed with ACC in Nov. 2010. I did online research and it also terrified me. There seemed to be nothing positive. My doctor told me to only look at CAncer.org and cancer .gov, the other sites are often worse case scenarios. Since this is a rare cancer there isn't a lot out about it. My tumor was in a different location, my salivary gland. I had surgery to have it removed, and went through 35 rads. The first 3 weeks seemed okay, just always tired, after that the taste buds, throat and esophagus, were very painful. Hard to eat, drink and swallow. I never had to get a feeding tube, but it might be necessary. I did have to have 3-4 IV's to get fluid in me, but it was very helpful. I lost a bit of hair along the back of my neck line. As hard as it might seem, take extra good care of your teeth, your gets so dry, that anything you put in your mouth seems to cling to your teeth, and can cause decay. A week after treatment ended it got worse, then has slowly, very slowly gotten better. I will have a CT scan in 6 weeks, and they will keep a close eye on me for two years, and if cancer free, then the chances improve each year I am cancer free, I was told if I make it to 5 years, the chance of recurrence is down to 5% compared to 25-30% in the first two years.
Also, the radiation treatments were 5 days per week, I could drive to the appointments myself, but I always had a friend either take me, or ride with me for the moral support. A different one each day, and of course family took me when they could. This is extremely hard to go through, but you have to take it one day at a time, and you can do it.
What stage are you at, and what age are you?

aaconquergood

Additional resources and patient support
I have a family member who has had ACC. Two places to look on the web for additional reliable information are www.accoi.org for patient support and www.accrf.org for research and more details on this type of cancer. Hopefully you will start to find the support and answers you need!

Riso

I too had ACC on the roof of my mouth.
Hello, I too had ACC on the roof of my mouth. I had a large portion of my hard palate removed in July of 2000. After it healed a little, I started my radiation treatments 5 months later. At that time, I was informed that chemo doesn't work on ACC. I've had clean margins and I have faith that it will stay that way! I have a prosthesis with teeth because the hole is rather large but I'm still here and kicking!

Right now you are probably bombarded with info and I don't want to overwhelm you. How can I be of help. I'm going to post this comment as is (without any additional info) because this is my first time on this site and I want to see what is public.

KristynRuth86

Riso said:

I too had ACC on the roof of my mouth.
Hello, I too had ACC on the roof of my mouth. I had a large portion of my hard palate removed in July of 2000. After it healed a little, I started my radiation treatments 5 months later. At that time, I was informed that chemo doesn't work on ACC. I've had clean margins and I have faith that it will stay that way! I have a prosthesis with teeth because the hole is rather large but I'm still here and kicking!

Right now you are probably bombarded with info and I don't want to overwhelm you. How can I be of help. I'm going to post this comment as is (without any additional info) because this is my first time on this site and I want to see what is public.

hello
I just wanted to offer support and as others have said, there is life afterwards. Good luck with all your treatments, the road will be hard, but it gets easier.
Lots of Love,
Kristyn