Welcome to OCF! Im very sorry you have a need for our group. We will help you with info and support to get you thru your treatments and past the recovery phase.

Most of our members had/have Squamous Cell Carcinoma (SCC). We do have several who were diagnosed and treated for ACC, but it is far less common. While ACC does differ from SCC, it sounds like you will still be going thru the same treatments. Ive included a link to our main OCF site that goes into much more detail about ACC. I hope you find this helpful.

As far as losing hair, that is not a big deal. I was worried about that too when I was first diagnosed. I quickly learned its better to lose some hair than not be around at all. Most patients end up with a small round spot on the back of their heads from rads. Mine was about the size of a penny and near the base of my head so it was not noticeable. Chemo is what causes the major hair loss. What I understand about ACC is at this time it is not responding to most chemo. Im betting you wont be getting chemo?

It sounds to me like you were given a laundry list of all that "may" go wrong. Not every patient experiences all of the side effects. Most patients feel they have no control over anything after getting a cancer diagnosis. During their appointment many find their ears stop working right after hearing that awful phrase "you have cancer". You have control over your intake which has a direct link to how difficult treatment will be. The better you do with meeting your daily minimum requirements, the easier getting thru this will be. Every single day from here thru at least the first year post rads you need to get at least 2500 calories and 48-64 oz of water. Even if your throat begins to get sore, keep drinking and eating. Get a prescription of Magic Mouthwash (MM) to numb your mouth long enough so you can eat. MM can have several variations. Mine was lidocaine, benedryl and malox. you swish it around your mouth for about 30 seconds and spit it out. I also suggest you start eating all your favorite foods now so you dont have cravings going into this.

Try your best to stay busy and away from Dr Google. You will notice you have a lot of hurry up and wait. If you can focus on what is within your control, you will become a stronger advocate for yourself. You may want to take someone with you to your doctor appointments so they can help take notes and listen for when you cant absorb the info. Also make a list of anyone who offers their assistance to you. Tell them when the time comes you will let them know how they can help. There are a million little things that others can do while you are being treated and recovering.

Best wishes with everything!


Main OCF Site -- ACC