Hi:

I'm Audrey and was just diagnosed with a form of Adeno Carcinoma... I have a leison in the roof of my mouth. Biopsied Thursday, confirmed Friday.

I don't know what to expect. But am fortunate to live in Massachusetts. Have been refered to a very good specialist at Mass General Hospital. When I know more, I'll get back with you.

I'm a bit overwhelmed as I read because I don't know enough about my condition to compare or share.

But I do wish each of you the best in your situations. And am glad to know you're here!

Audrey

Audrey, we are glad you found OCF- altho we are not glad about why you are here. Do you have someone going with you to appointments-as a second pair of ears? This is important. Please tell us more about yourself and you can be assured that many people will be here for you if you so desire. "Overwhelmed" is a normal reaction and it needs to be channeled into a proactive approach to your treatment. Keep posting- we are here to help. Amy

Hi Audrey, I was diagnosed with ACC in late June 06. I

Hello JAM and Rolf!

Thank you, thank you, and thank you again. I feel connected to some very special people. You are each in the midst of tremendous challenges. But your positive, supportive feed back means the world to me.

My husband is wonderful and has/will walk through this with me. He is however too emotionally involved (and as clueless as I me) to provide the support offered here. I'll encourage him to join the forum.

Rolf, thank you for your offer to share more details. And I agree that I should wait until I get further evaluation and details on my conditon and recommended options. My tendency to speculate is driving me a bit mad. It runs the spectrum from my cancer being localized and "relatively" simple excision... to... Is the sensation in my ear signs that it's spread to areas of my head? Will it be so extensive that I need facial reconstruction?

But I'm an optimist by nature. So I haven't even entertained the possiblity that the cancer is inoperable/untreatable or can only be temporarily repressed.

I can't discuss these thoughts with my husband. While, I'm so blessed to have someone that loves me and to whom I am the center of his life. He is quite fearful and more of a pecimist.

I'm 54 (55 at the end of October). My Family I haven't told yet. It includes one daughter, a son (step) and five grandchildren. Three siblings and my parents - Mom 82 today! and Daddy 84. And now I know people who care from as far away as UK!

So... I am blessed beyond mention.

I work in the technology field and am in the midst of a major project. I'm able to say that IT and Work is suddenly of little importance to me as I move through the next few days, weeks, etc. Life is to be lived one day at a time.

I'm off to celebrate my Mom's birthday. I will be in touch later. ...and looking forward to your feedback.

Rolf my appointment with the OM Team and further testing is 10/10. I'll have more details to share after that.

Thanks and it's great to MEET YOU!!!

Audrey

Dear Audrey, I have a couple of reactions to your above post that I'd like to share. #1. Is there another person [your daughter perhaps?] that can go with you and your husband to these initial appointments? 3 sets of ears and NOTES are better than 2 in a stressful situation. The diagnosis of cancer and the "jargon" about what is to happen next can indeed be very overwhelming! In fact, it makes most of us feel like we have just landed on a distant planet and have no clue of the language spoken there. #2. I hope you do not intend to try to conceal your diagnosis from your family for very long. I truly believe that is a mistake and and additional stress that you don't need. You can be upbeat and reassuring when you tell them and explain your treatment plan-Then you ask for everyone's help! #3. Try hard to stop speculating and use your energy instead to get a grasp on the nomenclature you will be hearing in the next few weeks. That will make you a better patient.
#4. Good for you for recognizing that work is secondary to health- keep that attitude going. Hope to hear from you soon about what's next. Amy

Hi Amy:

Thanks for responding and for the great advise. As usual, I'm trying to spare my family (temporarily) from the horror of the unknown. In part because I feel out of control and can't fulfill my normal reassuring role (family fixer upper, peace keeper, etc.) Later this week when I have more info on the diagnosis like the type of cancer they will be informed. It will still be at least another week before we'll know more about further tests, the prognosis and treatment options.

I'm really concerned about my parents who are in their 80's. Especially, my Mother who is the primary caretaker for my paraplegic Dad. She insists on doing most of his care with limited assistance from a home health person and her children/grandchildren. We have to just show up and do what needs to be done.

Please keep the advise coming. I'll consider telling and bring my daughter to the appointment on the 10th. I guess I need to start thinking more about my needs and a bit less about how things will affect others. (Quite a new direction for me. Old habit are hard to break.)

Thanks for the advice. Please keep it coming.

Have a good night.

Audrey

Audrey, When I was diagnosed with cancer I had three woman friends who were already cancer survivors (though none had had oral cancer which is why this board is such a blessing). Of the advice they gave me, all three said some variation of the following:

"I always was the person who took care of the rest of my family but when you get cancer, you have to learn to put yourself first. Even if it has never been all about you before, to survive this fight, you have to learn to feel OK with not taking care of other people and asking (or even demanding) that other people take care of you"

I think it's very hard for women to do this--most of us have been brought up to be caretakers of others to some extent--and sometimes the rest of the family (the ones who are used to being cared for by you, not caring for you) don't adjust well to this change. But the cancer battle is a hard one and you have to let go of taking care of others and take care of yourself first while you're fighting it.

(This doesn't mean you can't love and care for your family as you are able, it just means you can't put that ahead of your own needs during this time).

Nelie

Hi Audrey, I know we all have different emotions and have to deal with them in our own way. I can fully understand your concerns on telling you parents. But after the initial shock my children have been great, As JAM suggested I would take someone with you, my wife and eldest son came with me to the initial appointments and we all came away thinking we heard deferent things which was quite funny. But between us we did get most of the information. So if you can take someone with you it really help

Hi Audrey,
My parents were 82 the first time I was diagnosed and 86 when I got cancer the second time. Because they tend to worry when they don't hve all the facts, I waited until I had a suregry date and knew what the treatment plans were and odds of them working before I called my parents in FL to tell them I had cancer. I was amazed at how well they took it. It was 5 days before surgery when I told them so they didn't have a lot of time to brood over what might happen.

It is not necessary to tell everyone at the same time bt if you do decide to hold off telling your parents, make certain that those who do know, know you are waiting to tell them until you have all the facts. You know how your parents will react so tell them when you think is best.

Take care,
Eileen

Nelie, Rolf and Eileen:

I couldn't wait to get home to see what messages awaited me here at OCF. And was not disappointed. You all are like a life line. Here I'm able to speak with survivors, people who HAVE come to terms with horrendous news and are fighting back. This is what I need right now. Regardless of the prognoses. You're proof that life can and will go on.

I spent yesterday with my family for my Mother's Birthday and it was a great day. But its hard knowing I have info that will cause them major distress. Yesterday we laughed, remembered so many hilarious times. It was a great day!

I find that I welcome distractions to stop my random thoughts. Even the flat tire I had when I left work tonight...

Thank you for your replies. Your advise is so appreciated and it's like you read my mind. I do intend to talk to my daughter, best friend, siblings and my parents. I just want to have more concrete info when I do. Eileen, I'm sure I will wait to tell my parents especially with all they already have to deal with. My Dad is very protective. I know it depresses him to be wheelchair bound and to not be able to take some action for his children when life's realities hit.

Rolf, I can handle 'removal of the soft tissue'. I do so want more great days. May have to get through some difficult ones. But I trust there are more good ones in store. I hope you're feeling well too. I'm sure I'll have questions for you tomorrow.

Thank you all again. I'll let you know what I find out tomorrow.

Have a great night.

Audrey

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.

Thank you DaniO and August!

As ususal, more good advice that much appreciated. My daughter and I are spending the week end together with other family. This is our month of birthdays. Including Five generations born in my immediate family born on October 28, 29 or 30. We are very family oriented and demonstrative.... Lots of hugs and I love you's.... family events --- coming together cooking personal specialties, etc. So my adventure couldn't have started at a better time..

Don't think a general announcement would be appropriate.... But opportunities to pull a few aside or arrange for "tea time".

You are right my husband IS wonderful and I am grateful and blessed! This emotional rollercoaster is playing havic with me. Fear, Anger, anxiety regroup and repeat the cycle.

August, thanks for sharing your experience with Palatal surgery. Most posts have involved people with Tongue or other cancers of the lower mouth. So you're experience may have similarities in what's to come for me.

The common theme here is the 'Adventure' as you appropriately called it.. will take us to unknow places and require us to climb seemingly insurmountable mountains...

But with the support and information I find here, and of course that of our families... we make it through..

Please take care of yourselves... Remember me in your prayers I will you.

Audrey

Hi Audrey sorry not had a chance to reply earlier. I found August account interesting. As you are aware like August I have had extensive surgery to the top of my mouth and surrounding area. My concern has been in trying not to scare you before you had your results. However it seems like you are going to have surgery. I would like to give you some insight into my surgery and post problems, which might help come to terms.

My tumour was on the left side of my face and the hard palate The only way the surgeons can get to a tumour is by coming from the outside, they made an incision from my left ear across the base of my eye and down the side of my nose to the centre of my lip. The Surgeons had to remove all the bone in the left check my top jaw and palate, which included all the soft tissue. The Plastic surgeon then had the task of repairing the damage. He used my right leg for his parts. Yes my Fibula is now in my mouth; the Fib was used for the reconstruction, as were muscle and blood vessels from the right leg. I have a new blood supply from my neck to the mouth. Disfigurement yes I have two very large and horrible scares on my right leg. But unless you look really close you cannot see the scare on the face (My wife and I can see it if we look hard, everyone else has asked were did the surgeon cut?). I should point out that the whole operations took 17 hours (I was under general anaesthetic for 17 hours)

Post Op days: I was in Hospital for 14 day. I was never in what I would call pain, discomfort yes but not pain. Something you should be aware of you might have an obturator this is a plastic plate that acts as you palate (I