Hi to all. I have just found out I have SCC Tongue/Tonsil w/ one node Stage 3. My sisters have entered my profile so who knows what lies they have told. I could use a little help here. This has thrown me and mine for a loop. Please advise me with all efforts that you think I need. I will be honest and say that I am not a happy camper about this. Thanks

Hi Mom,

I just signed up to support you and I am in your corner about getting info. I love you. Get Well soon !!!

Hi Penny,

Welcome to OCF. This was what was said to me when I first posted a couple of weeks ago. The relief of finding this site is huge. No one hear is happy to get bad news, but you will find friendship, comfort, and loads of info here. Someone with a diagnosis similar to yours will respond, or someone with more knowledge of diagnosis will respond soon. Hang in there and visit here often.

Hi, Penny.
It sounds like you have an excellent support team! You and they will find great information here but it will seem overwhelming. Browse through the boards and you'll find a lot of experiences recorded.

You've probably read posts recommending that you never go to a doctor appointment alone. Always take someone who can be a second set of ears and a note-taker. Many folks use a notebook or a binder to keep all the notes together, all the docs' names and phone numbers (including after-hours numbers--SO important) and also to include articles they've gathered from the Intenet and posts printed out from this site to take to doctor's appointments.

The waiting is tough but once things get moving, it can be a wild ride. So, while you wait, take good care of yourself. Eat well, stay healthy and make sure you have a comfortable chair/recliner/sofa that will get you through treatment! My husband has absolutely worn out our sofa and we are awaiting delivery of a new one now that his treatment is done!

We are here for you and your team. Visit often, especially once the info from your doctors starts coming in.

Joyce

Hi Penny,

Just wanted to welcome you here. You will find lots of information here. It will take time to read but it is very helpful.

I know you are over whelmed by all of this. We all were when told we had SCC. Glad to see your daughter is here as well to support you. 2 heads are better than one.

I am now 8 months past treatment and starting to do well. It is a long road to travel but you can do it. Here you will find the support you need to make your experience a little less painful.

You will have good days and Bad ones too. Just know that we all understand and are here for you. As you read you will find the answers to a lot of your questions. If your are not sure just post it and someone will try and answer for you.

I found if I just took one situation at a time it was easier. It was to much to try and take it all in at once. Take one day at a time.

take care
Diane

Hi Penny,

I'm the oldest sister of another threesome so I feel for you. Other than pointing out that you were the oldest, they were very good in describing you.

My husband was diagnosed in January right before our 25th wedding anniversary trip - which we had to cancel - and he had no risk factors or symptoms so the stage 4 was very hard to understand. That thrown for a loop feeling is pretty common and it does get better.

Since you are starting treatment, I guess I would say that focusing on symptom management is important. Side effects of radiation vary and didn't kick in for Jack until week 3 or 4, and some people on the forum have reported they have had minimal issues. Make sure you tell your doctors if you get any side effects.

Jack found that staying hydrated with 3 quarts of water per day and 2200 calories was a big help in preventing worse side effects. He used his feeding tube when it became difficult to swallow. Also taking strong anti-nausea drugs as a prevention on a daily basis - Jack used zofran with compazine for breakthrough - made the nausea very managable.

You will feel tired and will need people to help you. Please accept all the help you can. We organized our friends, family, and anyone who looked remotely interested to help drive Jack back and forth for the daily radiation/chemo, and for PT and speech appointments. People can help with shopping and child care if you need that, and this is one time when the house is not your priority.

Have someone with you when you go to the doctors appointments, and write out all your questions in advance so you remember to ask them. This site has some great postings on the getting through it project that you'll find down near the end of the patient forum. Scroll back and you'll find some good discussions. Also there is a great search engine on the home page that will give you tons of information. One that I remember is the article on statistics and staging because at some point you will come across numbers that will scare the hell out of you. It's good to have read that article to understand we are all individual and the numbers are averages, not people.

Don't forget about pain medication, and things like magic mouthwash for your throat when it starts to hurt down the road. Also, anxiety and depression can be big issues during this so don't hesitate to ask for medication, counseling and anything else that will help you get through this. Sounds like you could do a sister daughter day with your suportive family and that is just as important as the medications.

Tell people how you are feeling, do not keep it in and think you're being strong. Most of all, enjoy the good moments that you have and keep your sense of humor. This too shall pass.

Regards JoAnne

Thank you you so much for your words. My family has been terrific. I know the only thing I need to worry about is fighting this fight. They will do all else.

Welcome, Penny! You have been given excellent advice. I just want to add that while this is HUGE right now, never forget that is it just a very small piece out of your real life. It is indeed a fight, but one you can take a day at a time, with weekends off. Even on days late in treatment when I was not a ball of energy, I felt a high when I marked one more day off on the calendar.

Let us know how you are doing, and know that any questions you or your family may have will find answers here.