New caregiver need advise

Irishlass. You have found a good place to be...even though you are in a tough situation. Here you will find a place for support, information and encouragement. One thing you might want to do is read the superthread at the beginning of the messages. After that you can search for answers to more specific questions by typing key words under "search CSN content".

Take a deep breath and see what the treatment options are. Is surgery out completely or will they try and shrink the tumor and then reassess? How much radiation? Will there be any concurrent chemotherapy? Is the spot on the lung metastasized from the SCC? I guess those are the questions I would start with. You will also want to know how the tumor is "staged" because that helps determine treatment options.

I would advise you to ask questions here and make a list for your health provider team. Don't "google" too much because you can read sketchy information and get depressed pretty quickly. That is not what you need right now. Stick to sites like the American Cancer Society, National Cancer Institutes and NCCN.

This is a treatable disease, but it is a rough rough ride. As a caregiver don't forget to take care of yourself also so you can be the best help possible to your husband.

We'll keep you in our prayers...

Barbara 

I don't know anything about base of tongue cancer. My husband had tonsil cancer. In his case he was offered to participate in a trial. I'm not sure with this type of cancer if that is an option or not. 

You might ask what will the treatment be like? Will he need full time care? Will he be able to work? How do most patients respond? What are the survival rates for his type of cancer? You will want to be prepared for the months ahead and the day to day practical aspects of caregiving, if needed.

The problem is there's no way to know how an individual will respond to treatment because everyone is different. They should be able to answer you in general terms how most patients respond. But there are always exceptions. For example, I never dreamed that chemo would be so hard on my husband that the first treatment almost did him in. 

I recommend researching as much as possible on some reliable websites. Knowledge is power. As you read, just write down whatever comes to mind. Are you set on a particular clinic yet? You will want to know how your chosen clinic compares to others, what guidelines they follow, what support programs they have for his type of cancer, what kind of follow up, what is their approach, etc. Most of the larger clinics have a team approach especially for this type of cancer. 

I know it's hard when they say ask questions and you have no idea what to ask. I usually write down as much as possible what the doc says during the appt. and as you're talking, questions will certainly arise. You can always call the nurse with questions after the appointment if needed. 

I hope this helps.

Good luck to you!

Welcome. It's good you've found this site because it will be a valuable source of information and support for you as it was for me. I had radiation and cetuximab for BOT cancer,  but no surgery. Interestingly, I also had been hospitalized for a-fib  few months earlier. You've been given good advice from the previous posters, so I would just like you to know we'll be here for you with prayers and support.

I am a caregiver too. My husband was diagnosed with oral tongue cancer (stage 1) in October, had surgery in November, and started radiation and chemo on December 8th. As a caregiver, I wanted all the information I could get from the doctors, nurses, etc. the more information I have, the better and more powerful I feel. I didn't want to be kept in the dark about a single thing. They may all hate me already because I ask so many questions, scientific ones even. But, I am my husband's advocate. That is my role. And I am serious about it. So I am never afraid to speak up.

Anyway, get a notebook and a calendar and take notes and write questions before appointments so you don't forget. Keep a folder for important papers too. I am currently keeping track of all the things my husband has to do everyday now. It is like having another job or taking care of another child, even though my husband still feels great and is still working. It is just best for me to keep on top of things for him.

i am glad you found us, but as others have said, sorry you have to be here. I know I am a newbie, but I have already gotten so much support from the members here. This is a great place. Good luck to you and your husband. You are in my thoughts and prayers.

Nadine