Hello
I'm hoping someone out there will be able to fill in some blanks.
My husband was diagnosed with salivary gland cancer of his palate last week.
He will see another surgeon on January 2nd and the wait is maybe worse than the pain he's in. This was the 2nd 'cyst' on his palate in the last year and a half, and his oral surgeon went for a much larger biopsy sample this time. He has been in a lot of pain and of course concerned with possible metastasis, since there were not clean margins. Knowing he has to go through more .. has been uncomfortable to say the least.
Anyone out there with the same cancer?
Thanx for reading.

Hello,

Welcome to the forum. My daughter has tongue cancer, so I can't fill in too many blanks for you. I can tell you that although she had successful surgery to remove the tumor and did have clean margins, she still has a lot of pain. Her pain is in and below her ear. Her doctor feels it is from the inflammation and swelling from the surgery and radiation treatments. He said the swelling is probably putting pressure on the nerve that runs to the ear. Her first indication of the tumor was pain in her ear probably because the tumor was pressing on the nerve. So, pain alone is not an indication of metastasis or even of the severity of the cancer.

I'm sure other people will post some more answers for you. It would be helpful if you could post some more details. I wish you both luck on the Jan 2nd appointment.

Rosemary

Not sure if I'm doing this right, but thank you Rosemary for your response. I am sorry about your daughter and hope she gets relief from her pain very soon.
As to details, George's pathology diagnosis reads: Junction of hard and soft palate: mucoepidermoid carcinoma, low grade. It continues: Neoplastic tissue extends to and is transected at the base of the specimen.
The oncology surgeon (on the 2nd) will decide how much more to take and whether or not he will need teeth pulled if radiation is recommended.
Happy Holidays Rosemary and whoever reads this. I appreciate your input.

Hello Marie,

like your husband, I also have/ had (I'm not familiar with the correct terminology yet) low grade mucoepidermoid carcinoma (Stage I) at the juction of the hard and soft palate.

I was lucky to have a dentist who performs an oral exam with my check ups since the lesion was completely asymptomatic; I myself hadn't even noticed it. The tumor was removed 2 months ago and I was amazed to notice how fast my mouth healed. I wore an obturator (a prothesis covering the exposed bone) for about 14 days. After it was removed I could speak normally again. Fortunately, I neither had to have any teeth removed, nor did I require additional treatment, and need pain medication for only 10 days after surgery.

Although I was told that my prognosis is "excellent", there is a very high recurrance rate, and even my oral- and maxillofacial surgeon, who provided outstanding care, could not give me 5-year survival rates due to MEC being so uncommon.
Unfortunately, this is a rare form of oral cancer, and despite extensive research I haven't been able to find answeres to all my questions re. recurrance which is quite frustrating. (Actually, this is the first time I came across someone with the same diagnosis).

I can understand your frustration and worry waiting for the next appointment. When my diagnosis was confirmed by a second biopsy, I had to wait approx. 7-10 days for the MRI appointment, and then about a week for the results. Not knowing the extend of the disease was excruciating aspect.

I hope that this reply was of some help to you, and I wish you and your husband all the best. Happy Holidays to you, too.

Sigrid, Thank you VERY MUCH!
your response was very informative and we appreciate your post. We'd heard from someone about a plate, but had an idea that it would be permanent, so your news has really lightened our spirits. Isn't the internet a great source for research!?
We'll be back to relate our experience with the surgeon .. Our oral surgeon said something about CT scans and further testing (?) before the next surgery. (This last biopsy which was large and deep was very painful for George, but he started feeling a lot better yesterday, thank goodness - the bx was 2 weeks ago today - whatta way to lose weight!!)
Again, heartfelt gratitude for your input!
:)marie

Hello Marie,

I am glad that your husband is feeling better just in time for the holidays, and that you found my reply helpful.
If you have any question re. my surgery, recovery from it, etc., please don't hesitate to ask me.
Best,
Sigrid

Dear Sigrid,
I would like to know ALL that you can share with me about your surgery, recovery, etc, etc, etc ..
As a breast cancer survivor, I KNOW that the well informed patient is ..... hmmmmm, a well-informed patient. LOL
Thank you, thank you.
:)marie

Hello Marie,

I am glad to hear you are a survivor who has beaten breast cancer

Hi Sigrid .. and yes, we'll have more questions.
We don't have a tumor size yet, since it was just a biopsy, a deep one, because it was previously biopsied 16 months ago, and was found negative. When it grew back was when our oral surgeon said 'uh oh'. Perhaps he should have gone further the first time.
Yes, we can email privately. I am on aol. Are you? If not .. your email address is?
Thanx again, and my hubby thanks you profusely.
:)marie

I wanted to send sngrid an email, but you have your email address turned off in your profile. You may find that there are people on the message board that wish to communicate with you this way. Go to the my profile link and you can find a button to change this setting if you desire. you can turn on both private messages through the board, and regualr emails as well. It also lets you choose to only let people send you an email from the borad directly, preventling anyone putting together mass mailing lists from using the email address easily.

Marie, I also have MEC. My biopsy came back on 7/5/02 and as I had already had the MRI prior to my biopsy I was sent for CT scan and chest x-rays before they set my surgery date of 7/30.. my mass was just under 2cm and ran down the right side of my soft palate from just where the hard & soft meet to the right tonsular area. I am going to send you an email to let you know how things went as my story that I started typing here became WAY to long!! I will answer any questions posted if anyone else needs/wants more info!

A fellow MEC
Julie D.

Sorry that I can't fill in too many voids but my cancer was a little different. The tumor was located on the epiglottis, right above my larynx.
At first the ENT doctor was talking about removal of the voice box but someone was watching out for me in the fact that the cancer had not spread anywhere else in the mouth or throat or into any lymph nodes. I underwent 40 radiation treatments w/o Chemo. I took 20 at once a day and 20 twice a day. I can try and offer support but not much info. This all happened between June and Aug. of 2002, all my decisions were made very quickly. Good Luck, if there is anything I can do to help please let me know.