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