Hi all. Recently diagnosed with SCC BOT Stage 4 with numerous nodes on both sides. Have met with the medical oncologist and have an appointment on Monday with the radiation oncologist and the surgeon for the port and the PEG. I decided to get the PEG but don't plan on using it or at least using it very much. My plan is to force myself to swallow regardless of the pain. PET scan scheduled for Tuesday. I am just scared and can't quit crying. Chemo and radiation scheduled to start on or about December 3rd. How did you all get it together for your families and friends?

Dear Emilie,

My husband has almost exactly the same diagnosis as yours. He just started radiation this week and had his first session of chemo yesterday. I think I understand what you must be feeling right now. We have decided to tell our friends and family the facts as laid out for us by the doctors. I have found that each time I tell people about this, it helps me to face it a little better. This forum has done a lot in teaching me what I need to know about oral cancer. Knowing the facts is one way of wresting control back from the disease. Good luck and lot of hugs to you.

Sorry to hear about your diagnosis. in 2009, at age 48. I was diagnosed with cancer in the tonsil, BOT, Valleculla, and three bilateral Lymph nodes. I was so positive, and thought I was stronger than cancer, so I told some like it was a cold. It proved to be much more difficult than that, and had four more recurences after, and more humble, realistic now. I was pretty independent, and lived alone, so no spouse, children to deal with, which is easier news wise, but difficult to do it alone all this time, and you will need all the support you can find either on line or in your personal life. Unfortunately, I did not go to any blogs, sites, but did my own reaserch for a short while, since after my chrmo I was no longer possile to do for a very long time..1 year. I guess there is no right or wrong way to deal with it or tell others, just what works for you, and gets you through this treatment. All the best.

Hi Emilie - You've come to the best place to be for all the latest and accurate information, plus lots of support from people who have travelled the road you are on now. It's great that you quit smoking! Yay! You already done something really difficult to do and looks like you are all set with a plan. The waiting for anything to happen is always the worst time but it helps if you can keep busy and try to think of all the ways everything can go just the way it's supposed to. If the negative thoughts start to creep into your head, just tell them to cut the chatter and force yourself to think of other more positive things. Tell your doctor how you are feeling - he might be able to prescribe something to help lessen the anxiety. Are you at a Comprehensive Cancer Center (where a team of doctors get together to help you decide on the best approach for your particular needs)? Have you already had surgery? There is so much really good information that you can check out on the main pages of OCF and it can help you formulate any questions you might have for your doctors or for anyone here. I'm sure others will be along with experiences that more closely match yours and can give you more suggestions. When my son was first diagnosed with SCC, just waiting for his surgery date was a crazy-maker but we did get through it and you will too! Dec 3rd will be here soon, so hang in there and there will be lots of people to help you through it. Come back often to let us know how you are doing.

Emilie

After 5 years and three bout with cancer, from my point of view, the task of "getting it together for family and friends" should really be their task to get it together for you. But I hear you as that is not what happens. Take a look at our long running thread: Don;t you hate it when for a quick glimpse of how people react. People want you to be positive and upbeat, like all the cool cancer patients in the TV shows: you know : Noble, with a new appreciation of life. strong, etc. don't you just hate it when thread Everybody just assumed that I was "a fighter and too tough to get beaten" so I really didn't have to get anything together but only smile and nod.
It is scary and feel free to worry and cry here on the board. We know just how scary this is and we all have had very very dark nights of the soul.
Survival is doable and you can beat this.
Keep the Faith
Charm

Welcome Emilie,
My husband was just diagnosed with SCC BOT Sstage III. We are waiting for his surgery which is scheduled for Dec. 5th. My suggestion to you and what worked for us, is to tell everyone exactly what is told to you by the docs. And then in te next breath tell your family that you can't do it alone and that you will need thier help. It's really okay to ask. That's what family and friends are for. It's not an easy treatment. Rad and chemo make you very ill. You will be thankful in the end that reeached out to them and they were there for you. I wish you well and hope everything works out.

All,
Thanks for the kind words. I guess I have had to be strong for so long...Single Mom my son's entire life, Caregiver for mom who had vascular dementia for 10 years. She passed last year and I finally thought my life was going to get back to "normal". Then the cancer diagnosis. Luckily I have the full support of my son who lives with me. I am going to try not to impose upon him too much, but I know I will have to at some point. He is 21 and even though he won't say it, I know he is worried. I have been reading many of the forum pages and it is so nice I am not alone. Thank you all.

Of course you are not alone, Emilie. We are all here for you so please come here as often as you need to. I'm glad your son is with you and I know he must be worried. That's what people do who love each other. I worried about my son when he was in treatment and tried to hide it from him so I could put on the "Happy Face" but I found out that he worried about me, too and all that he saw me doing for him. I set him straight, though and told him that the things I was doing for him were exactly what I so very much needed to do, to keep busy so I wouldn't be sitting in a corner someplace having anxiety attacks! So, do rely on your son, because I'm sure it will help him to keep busy and stay positive and to feel that he is really making a difference in helping you get better. As others have said, now is the time to let family and friends in to help as well. Make a list of the things you might need done, like rides to Rad Tx, picking up prescriptions, doing laundry, whatever. That way if somebody says "Is there anything I can do?" you or your son can show them the list and they can pick what they feel comfortable doing. People do want to help and sometimes they just aren't sure what you need or what they can do for you. Hope everything goes well with your appointment on Dec 3rd.

Hi Emilie, I know exectly what the "strong" steroetype is all about. I had all sorts of people tell me that "felt sorry for cancer, 'cause it picked on the wrong girl".

Those are the people I tend to smile and nod and say "damn straight" to.

The people who know you, and who really care will see your stress. Let them. And if you don't feel like you can, cry in the shower - that's what I did. Or cry here. We all get it.

Emilie,

Since you are committed to not using the PEG "unless"...then I would recommend you consider forgoing the PEG and if you do get to that point of "unless" then you can get a nasal tube like I did. I't totally painless, nonsurgerical and only takes a couple of minutes to feed down your throat and you can even pull it out at home when you don't need it anymore.