When you go to the ENT, you can ask him about getting a second opinion. I didn't go to a CCC, I was all new to this and everything happened so fast. I was more than ok with the care I received, but if you can get a second opinion I would definitely take their advice and go to a CCC if you can.

I'll be sure to keep you in my thoughts and prayers. It is a very scary process and it just plain sucks.

Hi Wendy and welcome to the OCF boards. I am sorry you have to be here, but you are definitely at the right place for information and support.

I too have grown children and our kids were kept advised as things progressed - they knew about diagnosis, then were advised of treatment plan. I sometimes think that maybe we should not have told them until I knew the treatment plan but I was not coping well (who would???) and they definitely needed to know what was up.

Once you have a treatment plan you will feel more in control. Right now your world has been totally turned upside down - but remember that cancer is a WORD not a SENTENCE. You have a disease and it will be treated, and your job is to be a well informed consumer of the medical system and your caregivers job is to be your advocate.

Keep posting and let us know how things are going. Cancer is a THIEF. Right now cancer is stealing your days, but try to be calm and don't let it have minutes, hours and days that would be much better spent enjoying your family, friends, and ordinary life.

We're here for you.

Donna

Wendy --

Why "welcome" may seem to be the wrong word right now, you truly are welcome here, and as you have already seen, there are lots of folks here to assist.

I know that feeling of devastation all too well -- as my signature shows, I also had a Base of Tongue (BOT in shorthand here) diagnosis. I did not have surgery on the tumor (though I did have a neck dissection due to spread to lymph node in my neck). Chemo and radiation eliminated the BOT tumor.

In the Blogs forum here, I have a blog that I was pretty diligent about keeping up during the treatment phases. It is called "Journey To Cancer Free -- Day Zero", and you might find it useful. Like SandySt above, I did not have many severe effects from the treatment.

My son was in his senior year of high school when I was diagnosed, and I was afraid I would not see him graduate at first. Now, he is a junior in college, and we are starting to plan graduate school visits in the Spring.

Live each day as it comes. We are all here to help.

Wendy

I am not going to repeat all the good advice you have already gotten except to stress that surgery should NOT be your first option in treating BOT. It doesn't get any worse than Stage IV with lymph node involvement like I had, but my ENT who is a surgeon stressed that the quality of life (QOL) issues merit trying radiation and chemotherapy first. DavidCPA and SandySt are living proof of just how great that can work out for you. I used to be part of that club, having avoided all surgery, even a PEG tube and no neck dissection. I had a wonderful year of remission before I had the drastic option of surgery become a mandatory requirement. Trust me, my recovery and QOL were both so much better with "just" radiation and chemo. Don't let your family or friends or even doctors rush you into a decision you may regret. The damage is done and a month or two is not going to make much difference at this point. Yes, even if you do need surgery, life goes on, just read EZJim's posts or the saga of Christine. On that point, be sure to insist that your biopsy be tested for HPV as that may give you hope since HPV positive BOT responds very well to radiation and chemo with few recurrences. Finally, I did share all the details with my son who was in his first year of college and he took it very well. Good luck
charm

This post explains why it is so important to get a second opinion from a comprehensive cancer center, where the staff deals only with head and neck cancer (so they have seen it all) and takes a team approach to treatment, bringing the knowledge of a variety of specialties to each case.

Another resource for information about treatment facilities, in addition to the link DavidCPA provided, is the National Comprehensive Cancer Network, an alliance of 21 leading U.S. cancer centers that annually publishes state-of-the-art treatment guidelines.

Hi all, I went to my appointmetnt with the ENT. Her prognoses was postitive she seems to belive that current staging is T1N0M0. Her recomendation is surgery to remove the lump/cancer and removal of the lymph nodes on the left side of my neck.She feels confident that the cancer has not spread to the nodes. So my treatment plan at this time is just surgery. I should be back to work in about 3 weeks or so, unless the node biopsy comes back positive. I will be sticking around here if you all don't mind, as I am sure that this is going to be a very difficult time of my life and although I am more confident today as to the outcome, it will be a long time before I can rest easy. Thank you for all your input, if you don't feel the decision is to hasty I will certainly listen to suggestions.

Thanks

Wendy,

From your description in your original post, it seems that your cancer is actually on the lateral (side) border of your tongue and not the BOT. If that's the case, it could be why it was suggested that you have surgery only as I did, with a neck dissection. I believe that everyone's suggestions have been based on you having BOT and not lateral border scc (squamous cell carcinoma).

This does make a significant difference in options. BTW, I was back to work in 3 1/2 weeks (on a modified work schedule) so it can be done.

Jerry

Jerry, I would think that you are right about the location of my cancer. Maybe the doctor didn't understand my question I asked when I asked if it was at the base of my tongue.

Please tell me, How did the whole process of eating and drinking for you go? I really love my coffee first thing in the morning and I am not looking forward to going without. I also really enjoy good food.

Wendy,

I don't drink coffee, but if I did, I can assure you that I wouldn't have had any for at least 10 days after the surgery.

I think the best way for me to answer your questions would be for me to email you a copy of an article I wrote for a dental magazine that tells my whole story. Of course, everyone is different, so this will give you an idea of what I went through.

I think I was pretty lucky.

Jerry

Wendy, you stated that you hope we don't mind hanging around here. Gal, you had better stick around an keep us posted as to what is going on . You became a prt of ths family with you 1st post. You help us realize that if caught early enough that you will be lucky and not have the severe treatments. We luv ya gal so stick around and boost some of us.