Well today I recieved the official diagnosis which is Polymorphous Low-Grade Adenocarcinoma of the Palate. My OM recommends immediate treatment. I will be seen next by the OM specialists at Mass General a week from today.

The Pathology report is greek to me so it's still a wait see. I know I will have surgery. What I really want to know is if it is primary or secondary? Will I also need radiation or chemo treatments? What tests will I undergo? How soon will the surgery, treatment begin. I have begun listing questions. And I will talk to my daughter tonight. And who ever said I needed second/third set of ears is absolutely correct!

During today's appt I felt as though I were in a dream. Didn't seem real to be discussing me with 'cancer'. My husband was there but I wish he were not. I can't stop wanting to take care of his emotional needs! Then I get annoyed because this is about me and not how he feels. I keep telling him he has to be strong because I'm gonna need him to be whenever he comments on how this is affecting him. I know this is hard for both of us. I don't want to become bitter because of my fears. Ramble, ramble, ramble.... Sometimes I don't know what to think or feel. Don't like being out of control!!

To who ever reads this... thank you for listening.

Audrey

I'm very sorry life has brought you this hand. There is some very good advice listed above by folks who have been going through this much longer than me.

I can only offer you prayers and good thoughts.

Tim

Audrey, I fainted when my first cancer doc told me in less than 5 mins that 1. I had cancer; 2. It was stage IV SCC with no known primary; 3. He said I needed a Radical Neck & proceeded to tell me what was involved; 4. I would need chemo and radiation and 5. I had a 60% chance of surviving 5 yrs. The only reason my wife said she didn't faint was that I beat her to it. Believe me THIS IS ABOUT YOU. Your spouse needs to be strong for you when you are no longer able and there will come that time. I can't believe how strong my wife became and I needed her sooooo much and she was there. She has now told me there were times that she didn't want to come home because she felt so depressed and lonely but she did and I could never have gone through this ordeal without her and her strenght. Get him to visit this Board.

Dear Audrey, Now is when the tough get going! If you are not up to it, get someone else to research the diagnosis on this site or google it. Once you begin to have some knowledge of the disease and the approaches to treating it, you can begin to compile a list of good questions to ask the Mass General folks. Remember sometimes good questions are "what is the meaning of this term?", "how many of this type of cancer have you treated?" "List the choices of treatment if there are choices" Remember, you can get almost all of the info you need about chemo and radiation here- so my recommendation is that youall learn what you can about the Adenocarcinoma before you go. Hope your husband can get his act together because you ae going to need him to be strong [tell him we have all said this] Amy

Audrey,
I was freaked out when I thought that I had cancer and I was waiting over a weekend for my good friend/radiologist to get back with me with the result of a barium swallow he performed on me.(I think he avoided me all weekend on purpose.) Once I was diagnosed for sure on Monday, though, I lost my fear and became very calm about the whole thing. My mother was upset. My sister was upset. My girlfriend and my children were frightened, but I, for some reason was not. I am not sure that I am typical, but I suspect that a lot of folks felt as I did. Once you know for sure that this strange thing has actually happened to YOU...you realize that it might as well be you as the next guy...and you accept it, and do what it takes to begin the healing process. For sure it is surreal.
I think that most of us on this board who have been through this ordeal are very realistic about our situations, but not necesarily sad...life goes on.

Take care, learn everything that you can, and keep us posted.

Danny G.

Hi Audrey,
The positive side is you know what you

Hello My Friends:
I haven't posted for a day or two, but I did read each message and thank you sincerely for your kind words of encouragement.

I have said it before and have to say it again. I haven't cried about my condition partly because I don't know what it means yet. But you have each been through the fire personally or with someone you love. Yet you are still able and willing to encourage and be there for me. THANK YOU....

That alone was making me feel guilty for momentarily not appreciating the pain my husband is in. We simply handle these things differently. I was getting frustrated that he kept rehashing what we learned at the followup from the biopsy. He wants to treat what was said as absolute/find something in the answers that are reassuring. But, I on the other hand would be devastated if I convenced myself that this is minor only to find out differently.

I told my daughter and she is ready to rearrange her life to meet my needs. She's worried but she hasn't flipped out. I guess she knows her Mom best... and has a similar approach.. Let's get the facts

Well enough about me... I again want to say thank you. Know that I think of each of you Rolf, JAM, Danny G, David CPA, Stoj and Amy. (Hope I didn't miss anyone.) Where ever you are in your recovery. Know that you make a difference for me daily. Remember me in your prayers as I will each of you, by name!

Take Care,
Audrey

Audrey, Please get your daughter up to speed to get on this site so she can read, post, ask questions, etc. before and during your treatment. Tell her that she may well have questions [and fears] that she is afraid to voice to you and you want her to have a reliable resource for answers] Getting Hubby here too would be a good idea if he will hook up. You sound like a very strong lady and that's good, but you will need to let people who love you take care of YOU for the next few months Amy

Audrey,

When my mom got her diagnosis I was 4 months pregnant with my daughter (my first child, her first grandchild) my entire family so wanted to protect me that they made my husband tell me. The best thing I ever did was log onto this website. It helped me get her through a lot of really tough times. She really didn't want to read to much about it so I do the research for her. She asks me questions and I post for answers to share with her. Everybody here is so wonderful and helpful. My thoughts and prayers are with you and your family.

Take Care,
Dani

Audrey, I have had surgery (Jan., 2006) for SCC of the right maxilla and part of the hard palate. MrsA and I have "found" each other, and we agree that there haven't been others with palatal surgery on this board, for some reason. I know that all cases are different, and that our diagnoses are different and might be treated differently, but our surgeries will have some similarities, as will our recoveries.

I want to say, like others have, that you must allow your family to "do" for you. When we deny them that privilege, it is like rejecting a gift that they are attempting to give us. They will feel pretty helpless as you go through this, so let them do as much as they can.

You will find that a good spouse will be your greatest strength throughout this process, IF you don't shut him out by trying to "protect" him. Let him be your rock for a while.

I share your tendency to protect my children, so while I have been totally open about everything, I do put on a bit of a happy face for them at times, allowing my husband to see the unhappy one. And now that I have returned to doing all that I was doing before my "adventure" as I have begun to call it, that unhappy face appears very seldom.

You spoke of the possibility of facial disfigurement.....I had a right maxillectomy and a partial palatectomy on that side. It involved quite a lot of surgery, including a skin graft inside my cheek, for which they used some allograft (artificial) material. All of my surgery was done inside my mouth. I also had a modified neck dissection.

After surgery, I had several neurological problems that made me VERY unhappy. There are so many nerves in the face and neck that they can not do this surgery without "insulting" some of those nerves. But my surgeon said all would get better, and it did. I had a totally numb ear that felt like it was the size of an elephant's ear, numbness of my face and jaw and neck, numbness of my upper lip, so that I couldn't kiss or put on lipstick, weakness in my lower lip that made me smile crooked...and some weakness in my eyelid that caused it to droop. I was a wreck!!

But gradually, the numbness has subsided, and my ear is nearly normal feeling, and the bit of numbness remaining in my jawline is not even noticeable to me. My upper lip is totally normal, and though my lower lip on that side is a little weak, it looks perfectly normal, and I even smile straight now. I look totally normal, and it didn't take very long for those things to resolve, so don't despair at first.

I guess that what I want to say is that no matter what surgery you have, you will wish you had not had to have it. And you will be different in some ways than before it. You can not go through this sort of experience, and the changes of this radical sort of surgery, and still be the same as before.

Life is all about change, I have determined. I have also learned that, no matter how difficult I feel that my burden is, there are others--some who have cancer and some who have burdens even worse than that....who have a much more difficult time than I do. I am a stronger person than before, and much more appreciative of my many blessings.

Palatal surgery will require some changes, and you will not like all of them, but you will adapt, and you will go on, changed a little, but still YOU!! And you will eventually find yourself feeling that some good came of this terrible experience, since it provided an opportunity for your family and friends to gather around you and shower you with their loving concern. I am personally thankful for that!! Perhaps your own discoveries will be different, but I guarantee that you will discover something positive through this experience.

I decided to be pretty open about what was going on with my condition, from the beginning, both with family and with friends. Very soon, I found that people I hardly knew were asking me how I was doing, with complete sincerity. They still do, and I very openly tell them that I am doing quite well, and that I really appreciate their asking. When they tell me that they include me in their prayers, I thank them and ask them to continue. It is obvious that people have spread the word, and I don't even mind. The more people interested in my health, and offering prayers for my recovery, the better, as far as I am concerned.

So....don't be a hero. Let somebody else play that role for a while. It's good for them, and they need to do it for you. It will bring you closer to them, and after this is all over, you will have the knowledge that you did this "adventure" together and came out ok on the other side.