Acinic Cell Carcinoma of the Parotid Gland

surgrey 5/6/09
I had a parotid mass removed last week ENT felt good that all was removed - well path came back as acinic cell carcinoma - will see the DR. in the am for stitches to be removed and talk about the path report - Any sugestions?? have been reading that radiation is good follow up but difference in opinion about types of radiation. I am 54 WF in Dallas Tx area have many great hospitals to choose from so not worried about where to go just what to do....

Hi Kathy,
I had a
Hi Kathy,

I had a parotidectomy and a tumor removed on 26 Feb, this year. The biopsy showed the tumor to be benign, and it was only after the operation that the diagnoses of ACC was made.
The cancer was on my right side, in the corner under my ear. Because the margins were not clear, I had to have Radiotherapy. I had 20 treatments since 20 May. The last one was two weeks ago. The first week of RT was o.k.,but since the second week I was nausious, and my blood pressure fell, so that I could not stay upright for longer than a few minutes at a time. It is only better for the last few days, but I still have to use anti-nausia meds from time to time. My mouth was a mess, since the second week. Half of my tongue felt and looked as though it was cooked, and the rest of my mouth was full of blisters and ulcers. It is getting better now. Miraculously, my skin was not damaged al all. It was red during treatment, but is as good as new now.
I think I had electron RT. I could make sure about that. We read about neutron therapy, and asked about it, but the oncologist said they stopped using that in the UK, since it was too destructive.
Please feel free to ask anything you want to know. You are welcome to use my e-mail too.It seems ACC is so rare, one struggles to find people who have experience of it.
Hope You are well soon, San

marla74 said:

surgrey 5/6/09
Hi Claire,
I have to say I have never been to france and no french in my language.
Can you please tell me what kind of surgrey you underwent in Feb 2009 and why did they go back and take the lymph nodes?
My surgrey was done by an ENT and the mass was a parotid on left ear area. She called with the path information and it came back as a acinic cell carcinoma which she nor her partner who did the surgrey together nearly 3 hours because of so many facial nerves involved however she said that no blood vessels were involved.
I am planning to see an ONCO regarding radiation - but I have been reading that there are 3 types and am totaly unclear which would best option. I am T1 - lowgrade but the chances of coming back are great. I have several types of cancer on both sides of family..JUNK genes what a bummer.
I am 54 WF in Dallas Tx area so have many great hospitals and DRs. just way to much to take in and research to make the right decsion.....
Thanks so much for reading,

Marla

I had parotiod this was my first Cancer I went to Clevelan Clini
Cleveland Clinic is the best I have had 6 cancers you think you got bad genes My cancers are all seperate and rare I had radiation No pain but the aftereffacts wil be challanging

Joanne1 said:

Parotidectomy
I had a parotidectomy April 16, 2009. Almost a year. Yes the tumor came back as acinec cell carcinoma and the doctor knew that when it was removed. The Pathology report confirmed it. He removed the whole parotid gland. Recovery was very quick and I felt good. On June 1st I started radiation treatment. 33 treatmens in all. I had a red mark on my cheek and neck, I lost some hair on one side of the nape of my neck but Ihave enough hair to cover it. My neck was purple and had a sore on it but that all subsided very quickly. Now almost a year has gone by and I'm feeling a lot of pain in my neck at the incision part. It seems that my neck is protruding out and it is very sensitive to touch. I am still numb there and understand that will always be but I certainly can feel the pain. I go back on April 5th for a follow up and I'll see what he says. A pet scan right after the radiation showed no more cancer but why the pain.

Parotid gland cancer- symtoms
Can anyone tell me what types of symtoms they had before they found out they had this cancer? I have been getting extreme swelling and aching pain in this area for a few months, and sometimes so bad that I can't open my mouth, or close it to chew. I am going in for an MRI tomorrow, and not sure if anything will show up.

My experience
Last July I had a right parodectomy. I found out I had acc on friday and was in surgery on Tuesday. It was a painfull lump on the right side at the corner of my jaw under my ear. I had no symptoms ( besides the pain when pushed on). I did not have to have any radiation, and i was back to work in three weeks. I feel very fortunate. I feel that my second son being on the way then saved my life.

God bless,

Dempton said:

My experience
Last July I had a right parodectomy. I found out I had acc on friday and was in surgery on Tuesday. It was a painfull lump on the right side at the corner of my jaw under my ear. I had no symptoms ( besides the pain when pushed on). I did not have to have any radiation, and i was back to work in three weeks. I feel very fortunate. I feel that my second son being on the way then saved my life.

God bless,

Numbness
I still have numbness around incision site and into my face. Does anyone else have this? Also, I have been trying to find more info about acc. I would like info and not statistics. Has anyone found a good resource? Thanks

dwall1 said:

I had ACC removed in 2003,
I had ACC removed in 2003, my tumor surrounded portions of the facial nerve and the surgeon had to cut part of it. I have regained the motor function but the sensory function on the entire right side of my face and a good sized portion of my neck is gone and has been numb for the past 7 yrs. I do not have any pain though. This may be the same case for you, just wanted to share my experience.

ACC in 2007
In Nov. of 2007 I had a ACC tumor removed. After surgery had six weeks of radiation. Have experienced pain in my face ever since. No more cancer as of this date.

lacey_blair said:

Parotid gland cancer- symtoms
Can anyone tell me what types of symtoms they had before they found out they had this cancer? I have been getting extreme swelling and aching pain in this area for a few months, and sometimes so bad that I can't open my mouth, or close it to chew. I am going in for an MRI tomorrow, and not sure if anything will show up.

This is probably a moot response given the elapse of time since you posted.
The first thing I noticed was a small lump below/behind the ear. My regular GP dismissed it upon my 1st 2 inquiries, even though I told him I suspected it was in or near the parotid gland. After several months, it was occasionally slightly painful. Fortunately, I consulted an ENT upon advice of my chiropractor, and the ENT immediately diagnosed it correctly as a parotid tumor.

So any swelling in the region of the parotid or other salivary glands that persists for more than a few days should be checked out by someone such as an ENT specialist. They can then order an MRI or CT, and/or do a Fine Needle Aspiration (FNA) for preliminary biopsy, though these are not always conclusive and there is at least to some minds uncertainty about the comparative benefit/risk of doing them.

Keep in mind that some/many parotid tumors will be benign and that certainly not all such swellings will be tumors.

MsJo said:

Acinic Cell Carcinoma
I am commenting on your message. Alot later but, have the been diagnosed w acinic cell carcinoma of the perotid gland and had tumor removed April 2011. Tumor was low grade and 5 lymph nodes were benign. Two Drs recommended no radiation and 2 were for radiation. As of this time I have not had radiation. My Hd and neck surgeon rec not and has been following up w me every couple of months just checking me. Now 2nd opinion from oncologist at another facility is recommending ct scans and chest x-rays every 6 mos. or radiation treatments. But it has been 9 mos. since surgery. I am trying to make a decision soon and am concerned because they had done a needle biopsy 2 and a half mos. before the surgery so am concerned about spreading of the cancer cells through the bloodstream. Is there anyone w this form of cancer that could tell me about their experience, or opinion on needle biopsy, wish I hadn't had it? Its a rare bird, would appreciate some input. Good luck and prayers to all of you dealing with cancer of any kind. Had noticed you were 54 in Dallas area, and was curious what facility you found that deals w this kind of cancer. Thanks,Ms Jo 54 in central Texas.

ACC
I was diagnosed with ACC in August. (Right perotid gland) I had it removed almost 2 weeks ago. Today I got a call from my doctor saying that the unanimous vote was to monitor the area for regrowth. I was told that some cancer cells still remained in my facial nerve. The reason they've decided not to go through with radiation was that I am only 25. My Doctor said, that had I been 50 he would have chosen radiation in a heart beat. Because I am so young I'm expected to live for quite a while, radiation can have horrible side effects after a while. Someone who is 50 isn't likely to live long enough to deal with the long term side-effects.. that's how it was explained to me anyway. My tumor was found to be stage 2, the lymph nodes that were removed and tested were not infected.

ScarlettInTangles said:

ACC
I was diagnosed with ACC in August. (Right perotid gland) I had it removed almost 2 weeks ago. Today I got a call from my doctor saying that the unanimous vote was to monitor the area for regrowth. I was told that some cancer cells still remained in my facial nerve. The reason they've decided not to go through with radiation was that I am only 25. My Doctor said, that had I been 50 he would have chosen radiation in a heart beat. Because I am so young I'm expected to live for quite a while, radiation can have horrible side effects after a while. Someone who is 50 isn't likely to live long enough to deal with the long term side-effects.. that's how it was explained to me anyway. My tumor was found to be stage 2, the lymph nodes that were removed and tested were not infected.

Acinic Cell Carcinoma
I felt my second bump near the bottom of my right ear in August 2011. I had a previous surgery to remove another noncancerous tumor in 2010. A FNA in September of 2011 said it was not cancer but there was some abnormality, so my ENT and I decided on surgery. On December 16th I had the tumor, and only the tumore removed. My surgeon did not remove more because he and I did not think that it was cancer. Three days before Christmas I got the results of ACC. I had a PET scan and MRI's and just saw an ENT oncologist at a univeristy hospital near me. The new doctor is now recommending a third surgery to remove the entire parotid and test the surrounding tissue to make sure that there is not more cancer. My original surgeon recommended radiation, but everyone else disagrees since I am only 32 years old. Now to make the decision whether or not a third and more extensive surgery is what I want to do.