I am new to the board. My father was diagnosed a with oral cancer a few weeks ago. I am sort of lost at this point because we are on opposite sides of the country so I don't have the advantage of getting a lot of the information about what is going on. What I know is that he was diagnosed with cancer in his soft palate, throat and one of his lymph nodes and it is inoperable. He got his first treatment of chemo two weeks ago. They put a port in his arm and he got chemo for one week, then has two weeks off. The plan is to do the chemo and start radiation soon. He was given a feeding tube already. He spent last week in the hospital because he had blisters inside his intestines, I think because of the chemo. He has started to lose his voice and was told he may end up having to get a voice box. My hugest problem is that my dad is trying to be protective so he hasn't told me anything about what stage the cancer is and if the dr's have told him his chances of survival. Can anyone help me with what information I have as far as what I can expect? I am on an emotional roller coaster because I am so scared that this may be terminal and I won't know until it is too late. It is getting harder now because he can barely speak anymore so I can't even talk to him much. He is alone out there except for my grandmother. Unfortunately, she is is disabled, she had to have one leg amputated so she is very limited herself in traveling and helping him. I have three young children and I am not in the position to leave work to go care for him. Of course if I knew if he was terminal, I would make the sacrifice and go there to be with him. I am just trying to get as informed as possible to know what we are facing.
Thanks,
Terri

Hello Terri, Welcome! Your father has a difficult road in front of him. It sounds like he doesn't want to be a burden for you, but in fact his situation is a burden anyway. Try to explain to him that you need to know and that he needs you to know. I realize that may be difficult but it is important that you know.

I also want to advise you in a practical sense that he needs to tell you what his financial situation is and get a will and a medical care directive in order. YES he might survive this and I don't want you to freak out. You need to know so that your grandmother is well cared for. If your father goes through radiation treatments he will probably not be able to care for your grandmother for a while. The treatments are really going to set him back. We can answer questions as they come up but you need to connect with him in a really close way now.

Feel free to ask questions here all you want.

Take care

Terri
I just wanted to welcome you to the board, there are not many questions I feel I can help you with right now but , as your journey progresses and you are able to find out exactly whats`s what we are here.
Your Dad is going to need help from someone .. and your Grandmother obviously cannot do it .
My daughter came from England to help me as I was exhausted trying to manage on my own.
My husband was the same, very reluctant to tell the kids the whole story , he did not want to worry them. Just a Dad trying to protect his kids .
Let us know how you get on Terri, make him talk to you !
Take Care
MArica

Terri--I'm in a somewhat similiar situation with my Dad, who is 75 and will have surgery next Wednesday to remove tumors on tongue at minimum and perhaps a neck dissection, depending on "what we find when we are in there". He's had another kind of cancer, nonHodgkins Lymphoma, for about 10 years, so he just finished chemo for that and he's had radiation for it before, too, so surgery may be all they can do for him as far as this new, tongue cancer goes. I live in Kansas and he's in Chicago and my Mom is with him, so we've got it better in that regard. Like your Dad, mine wanted to "protect" me from this, so I had to physically come here and go to the doctor appointments with them today to learn what's really going on. Fortunately, my kids are grown and my job's flexible (as is my husband). If your Dad does email, writing him may be helpful, in addition to cards & notes in the regular mail. Clearly, talking is on the phone is difficult due to his treatment. Does he have friends, co-workers, other children, who you could enlist to check in on him,too? Knowing you care is important, even if you can't be with him. Doing what you can from afar will make you feel better, too. In a way I came here for myself as much as for my Dad. It helps me deal...Hang in there. Tina

Hello Terri,

Feel between a rock and a hard place? Mark has offered very sound advice. It's important that you connect with him in a way most people don't.
Make the effort to find out what stage and treatment options are aviable to him. He will need a primary caregiver as this treatment is no walk in the park. Is there anyone who you can count on to help with his care?
Ask alot of questions and use the search engine on this website to research just about anything related to oral cancer. You'll have plenty of questions the further into treatment he gets.

My best wishes to you and your Dad.

Danny Boy

Terri,
Is your father being treated at a major cancer center? If not, have him go there for an evaluation BEFORE beginning chemo or radiation. My brother, too, was told surgery was not an option and chemo and radiation treatments were begun. He went through five months of HELL - and I am not exaggerating - before we could finally get a cancer center to take him (they don't like to get involved once chemo or radiation has been started). To make a long story short, his new doctors surgically removed the cancer. Unfortanetly he has already had is lifetime max of radiation and the chemo he was given damaged a lot of the cells, muscle and tissue in his jaw. It is essential to get to a major cancer center - not just a regional center at a local hospital (no matter how big it is). Anyway, that's just my opinion.
Best wishes to you, your father and your grandmother as you join us on this road.

Terri,

I am truly sorry to hear about your father and especially with you so far away. I know how difficult this must be.

Based on what you provided, the cancer has presented itself in at least two areas and has spread to at least one lymph node. The doctors have used the word inoperable. The combination of terms indicates it is somewhat advanced as far as staging is concerned. Whether or not it is terminal is not the biggest issue. Life is terminal for everyone. The road ahead is not going to be easy for your father or your grandmother. The chemo is already taking its toll on him and the radiation will most likely even be worse.

I don't know what sacrifices you would make if you had to and I understand that your father doesn't want to be a burden to you. At a minimum, you need to get a support team around your father. That may not necessarily mean you have to abandon your life and go there but it does mean your father and your grandmother can not do this alone. Do they belong to a church? Do you know any of their circle of friends? There are some pretty serious discussions that need to take place now before the treatments get rolling.

Has your father been taking anything for the intestinal issues? It is pretty common and is referred to as stomatitis which is caused by the chemo. It literally starts at the mouth and works its way through the entire digestive system. It usually starts a few days after the treatment and just as it works its course, another round of chemo starts.

Learn what you can. Tell you father how important it is for you to be informed and ask him if he would like you there. Be prepared if he says yes to be there.

Again, I am sorry you and your family is experiencing this and I am hoping for the best possible outcome for your father.

Ed