Hi all. I was diagnosed with an SCC on my tongue. I had it biopsied on 4/18 and got the bad news on 4/21. This past Thursday, the ENT gave me the results from my X-rays and bloodwork. All indications are it is contained to the oral cavity. The only questionable finding was one "slightly enlarged" lymph node on that side. The ENT says the tumor is borderline T1/T2 according to size.

I am headed to the otolaryngologist on Tuesday the 10th for consult. The thing I don't know is, there is a portion that has spread up my jaw to the gums on the inside of my molars. My ENT told me if they remove that part surgically, there is a chance they will have to take part of the jaw bone. He wasn't sure if the otolaryngologist would recommend that or radiation therapy. He also wasn't sure how they would handle the enlarged lymph node. I say...if there's any doubt, I want it removed! Will be interesting to see what the specialist says.

Anyway, I knew the jaw was a question, so I'm still nervous. But, at least all my other tests came back clear (lungs, brain, etc..). I will let you know how the consult goes on Tuesday.

I sure am ready to get started. The waiting and unknown are the worst parts so far. Plus, swallowing and yawning are getting pretty painful. Also a lot of referred pain in my ear.
I'm looking forward to being one of the many "survivors" and giving pep talks and advice to others instead of being on this end of the chat board. :-)

Thanks,
Jennifer

Hi Jennifer,
With a T1/T2 I would be getting a second opinion, especially with that type of surgery. I hope that you are being seen at a comprehensive cancer center. You want to have access to the best treatment possibilities.

On a positive note it appears that it was caught early.

Hi Jennifer
Tell them to hit it with everything they have got, several on the forum have had jaw bones removed and replaced with healthy bone from else where, several have had radiation, keep searching the forum and keep asking the questions, keep us informformed how you are doing.
Sunshine... love and hugs
Helen

Jennifer,

It's great news that all the tests so far show no spread from the oral cavity. But I'd second the advice to get a second opinion no matter what. If I hadn't gotten one, I wouldn't be having the aggressive treatment I am having but I think I also might have left myself much more vulnerable to a recurrence. And I was advised in a second oponion to have this treatment even though I had no node involvement, either based on CT results or subsequent neck dissection surgery which removed about 28 nodes.

I think it might be time to travel to a comprehensive cancer center for an opinion. I know you are eager to get started but time for a second opinion is definitely not wasted time.

Nelie

Hello Jennifer,

You have gotten some sound advice from the above posters. You want the best to evaulate your condition. Someone who sees Head & Neck cancer patients alot. I found out after my treatment at the local cancer center they only saw 5 oral cancer patients a year!!! I was a stage 4.
You want to throw everything at this the first time. It is a most unforgiving diaease.
We have lost some stage 1 & 2's while stage 3 & 4 have survived. Everyone reacts differently to similer treatment. As you start your journey I hope your decisions are sound and you recover completely. You can beat this just like so many other members have. I and many members will be pulling for you. Ask any question you can think of and someone will reply. It is a close band of brothers you are now a part of. I like to think of it as "One Big International Cyber Family"

Best Wishes, Danny Boy

Brian, How do I move this to a new posting? Dan

Hello All,

I am scheduled for twenty (HBC) dives prior to some dental work. Followed by ten after trearment ends. Some questions I have are:

What is it like?
Are you in a cylinder or a room?
Is it painless?
Will I need any meds to control pressure in my ears?

Remember I'm a big chicken when it comes to pain.
And I hate shots!!!!

Love ya All, Danny Boy

The basics of HBO Treatment:
I went once a day, five days a week.
When I arrived I went to a bathroom that had small lockers for our personal belongings and I changed into a hospital gown.
No makeup, NO jewelry, NOTHING is allowed in the cylinder with you. If you are doing treatments in a room with others I believe you are able to keep some reading material, although I'm not sure.

I would get onto a gurney that was put directly into the cylinder.
A black bracelet is put on you, called a "ground".
You are given a bottle of water, sometimes in childs sippy.
You are given an oxygen mask for your "oxygen breaks".
They wheel you in and start taking you down. Not that you go anywhere, but they start decompressing the cylinder, if that is the correct terminology.
The first time it's a little scary because you expect all this pain in your ears but I didn't suffer that at all. I eventually was able to go "down" without even a drink and could control popping my ears by swallowing.
I was able to watch TV and could even choose a movie to watch, which I didn't often do as I usually didn't get to see the end of it.
They will check your ears at each treatment to watch for any problems.
Ask for extra blankets, I always found it cold in the cylinder. I didn't have claustrophobic issues with this treatment, the cylinders are quite roomy.
You will have changes in your eyesight. If you wear glassed your eyes will reach near perfect vision for an extended period of time, for me it was over a month. I would have to take my glasses off a good part of the day. Eventually your eyesight will return to it's original state.
Minnie

Danny, I can only move an entire thread. If someone posts a new message at then end of someone else's thread, the most I can do is delete it... so much for my omnipotent powers!!! We just need to email the poster and tell them the protocol about starting new threads when they start an original or new idea. Clearly this shouldn't be done here; perhaps the poster will start that new thread having read this.

Thanks to all of you for the advice. The otolaryngologist I'm headed to see on Tuesday is at the OU Med Center in Oklahoma City. I've heard great things about it and they have oncologists etc... on staff.

I will make sure to ask how many oral cancer cases they see a year and see how hard they plan to hit this. I think from what I've read on this site and what I've read on my own, I will have a good idea how to proceed after talking to the surgeon.

I'll let you know how it goes on Tuesday!

Jennifer

Jen,

Nice to see you have done your homework. Keep it up. You can win this battle with brains.
Your attitiude is great!

Just left the OU med center page. Looks like its the place to be in OK.

Make sure your share the protocol with us.

Take it easy.
Robert

Thanks Robert. duh...I hadn't thought to go out to their web page. I am perusing around now. I am scared today....hadn't been scared until now. I think I've read a little tooooo much. I'm going to stop reading for a while, at least until after I meet with the surgeon. I know enough now that I won't be completely ignorant when I see him, and any more information is just spooking me.

Thanks again everyone. I will post more after tomorrow.

Jennifer

Hope you get the best possible news from your meeting with the surgeon Jennifer. I know what you mean about reading too much, before then, and thinking the worst. I did a little of that too. It's a good idea to manage the information you expose yourself to at first, so you don't get too scared over things that may not be relevant to your case.

Some people ask their spouses or a friend to do more of the reading at first and then share it with them. I preferred to read on my own but found it a much more focused and less scary endeavor once I had more info. about my disease from my docs.

Dear Jennifer,

It's OK to be nervous. We've all been there. You have decide how much you want to know. My suggestion is to find the strength to learn as much as you can. Share the info with family and friends. The more heads the better. While you undergo your treatment, these people will be there looking out for you and the more they know the better. I know it took me at least 2 weeks after surgery till my head was clear and I relied very heavily on my wife's decision making.

Good luck tomorrow and my prayers are with you.

Jerry

Hi Jennifer,

Be certain to take at least one person with you tomorrow. Two sets of ears are better than one, especially whne youhave ot digest all this new info and make decisions.

Keep us posted on what the doctor says.

Take care,
Eileen

Thanks everybody. My wonderful husband went with me yesterday and together I think we retained most of the information.

My tumor is far enough back on the tongue they will have to split the jaw to get to it. I am also looking at a skin graft due to the portion on my jawline, and a selective neck dissection.

I was prepared for the skin graft and the neck dissection...but the jaw split caught me completely off guard. I handled the news okay, but it really hit home while talking to the plastic surgeon. I am going to have one hell of a scar.... but...at least it sounds like they think it's contained and can be completely removed with surgery. The Dr. has told me to expect around 10 days in the hospital with the first in ICU.

I sure would like to hear from anyone else who has had this type of surgery. Also...any advice on what to tell my 7 year old? She already knows I'm going to have surgery. But, I haven't mentioned cancer around her yet. She is a very mature little girl, and I'm sure she will pick up on it once more of our friends are aware of the situation. I think I can tell her without scaring her (i.e....remember Aunt Ruth had cancer? She's fine now...). I would just rather her hear it from me. Any advice?

Thanks,
Jennifer

Jennifer,

I cannot comment on the surgery but I can certainly tell you about the kids.

TELL HER THE TRUTH! I do not mean that you need to overwhelm her with things that she won't understand.

I have 2 sons 8 and 11.... From the beginning I have told them what this means. They know that they could loose their father. They know that he is very sick. They are a little young to really understand it all but my husband and I decided that it was best to tell them the truth. He told the boys that no matter what happens that they should always know that he loves them.

This has been extremely difficult on our children. I had to get our youngest into therapy last week because he got really angry at me and threw his backpack at me.

This is a family struggle and I know there is a tendancy to want to protect those we love. Just know that we are not protecting them when we leave them in the dark and when we are not honest about the turns that happen in life.

Dig deep and you will find that you know the right things to say. She will cope so long as you help her. Tell the truth and try to explain as best as you know how. Also help her to find outlets where she can explore the feelings that she cannot share with you.

None of us knows what is going to happen. Cancer brings death to the forefront of your thoughts. That cannot be avoided. But you can take the moment to explain it too her and to hold her as much as you can. Love knows no boundaries, even in death. That is what you make sure she knows no matter what happens.


Best of luck!

Cindy

Jennifer, I didn't have the jaw split but I have seen and heard from many that have. Just like the radical dissection, it sounds much worse than it is. The thought of any surgery can be a fright. For God's sake don't go looking at pictures on the web! Leave that to the doctors. Practice the one day at a time thing and if that is too much go for one minute at a time.

As far as young children are concerned, I agree that the truth is always in order...but not necessarily all the truth at once. Kids are perceptive and will know by "reading" the other family members as to how serious this is now or gets later. As of now I would suggest that any comments about mortality be saved for later unless the child asks. You are not dead, and in fact you have a very good chance for recovery. Children have a different concept of this subject than we adults. Often their reactions will be different than you might expect or prepare for.

On a seperate but important subject, be sure you have financial and estate documents in order. Many states have laws about how property is split if there is no will. You will sleep better if you and your husband see an attorney and get a will for both of you and perhaps trust documents on behalf of your children, as well as personal medical directives. These documents should always be up to date but especially when children are involved. This should not cost more than $200 to $400 dollars.

I DO NOT suggest this because of your cancer!

This is something that all parents should do. My wife and I put these things off for years until just a few days before my surgery. When our attorney explained the laws of our state I was really mad that we had waited so long.

Take care

Hello Jennifer,

I had my jaw split to allow access to my tumor on my right tonsil. It was not as bad as i thought it would be. I was home in 8 days after surgery. Also the scar is not to bad. Gets better as each month passes. While it's no walk in the park I know you will do fine.
As Mark said take each day as you can and soon this will be behind you.
Hoping your treatment goes well and you have a complete recovery!!

Best Wishes, Danny Boy

Good. You all confirmed my first instinct. I will just tell my daughter the truth about what is happening. I won't overwhelm her, but I feel like I need to be the one she hears the word "cancer" from. I'm not going to talk about death, because I think that would just scare her unnecessarily...but I am going to talk about the surgery so she will be prepared for the scar.

Danny, was your jaw wired shut after the jaw split? How long before you could eat? Did you have a tracheotomy? My Dr. has told me I should be swallowing my own food before I head home, which kind of surprised me.

As always...your support is the best. Thank you.

Jennifer

Jennifer,
I had my jaw split and had half of my lower jaw removed. I was eating very well two weeks after the surgery. I did have a trach which was the part I disliked the most, but it was out within a few days and some don't mind it at all. The trach area took approx. 3 weeks to heal. My jaw wasn't wired shut.
The scar is small and I believe will continue to get smaller. Many don't realize I had anything done to my chin.
Good luck with it.

If the jaw splitting is your biggest concern, there are surgeons that do this without splitting the jaw, my husband's surgeon did. I read through the replies quickly. You said at the OU Hospital there are plenty of oncologists. Have you met with them? I would advise meeting with both a medical oncologist and a radiation oncologist as well as the head and neck surgeon. Sometimes they have a different pespective because of their specialties.

Know you're in the thoughts of lots of people in this forum. Keep us posted. Keep the questions coming.

Lowanne

Hello Jennifer,

My jaw was not wired shut after surgery. They kind of like screw it back together. I couldn't see anything it's all under the skin.
I did have a trach and didn't like it one bit. It was only in for about two weeks. I had a suction machine ordered by my doctor to remove alot of mucous the first month or so.

Many of us have had this type of surgery and survived and you will to!!
I was eating about two weeks after my surgery. Mostly soft foods and alot of soup. I did have a PEG tube in for 7 months. I needed to input enough to heal without losing weight. Some go without the PEG and do fine.

Hoping you have a full recovery, Danny Boy

Thanks. Nice to hear from all of you about your experiences with this! Sounds like I can weather the jaw split okay and won't look like a character from a Mary Shelley novel. :-) I will however check into seeing if they can do it without splitting the jaw.

Interesting to hear about the tracheotomy. I had wondered how that would be. I think I will dislike it also, but sounds like it is more annoying than anything.

Had a call from the dr. to discuss the surgery, but they called my home. I called back and left my office number, but haven't heard from them yet. I will try again in a bit.

OH! Almost forgot. I sat my daughter down last night and told her about the surgery. Told her what they would do, and that I would have a scar and look "different" for a while. Also explained it was cancer, but that I would be fine and the dr.'s would remove it. All she asked was if she could come see me in the hospital. What a sweetie.

Anyway, thanks again, and I will update as I know more. Thank you for helping me through this difficult process.

Jennifer

P.S. Mark, my husband and I have wills in place, but it doesn't include our new baby yet. I will work to get it ammended. Thank you for the reminder.

Hi Jennifer
Minnie is right about the trachie, sounds worse than it is, without her input I would have freaked out, but I woke to the main thought, YEP I can breath no problem, make up a wipe board to take with you, paper runs out to quick. They will control your pain and the swelling will soon go down, my brothers twin boys 12 years old came the day after the op, they did good..for them the real stuff was better than their imagination. Make sure she understands you cannot talk for a few days, tell her it doesn't hurt, it doesn't, but it's a bummer if you want to shout s##t and you cannot speak, my husband is blind and doesn't do notes...
Sunshine... love and hugs
Helen

Helen is absolutely correct about having something to write with. Have someone there with writing materials when you come to, because you will have questions. After a few days, you will be able to talk by putting your finger over the trach. Mine did not hurt at all, the removal was painless, it healed very quickly with just a bandaid, and today one must look very closely to even tell I had one. You do not need to add this to your list of worries, Jennifer.

Thanks to all of you. I had planned to get a small write/erase board, but keep forgetting. I'll go get one today. One thing, my oldest daughter is in the first grade and can read now, so it will be nice to be able to communicate directly with her.

Today was tough. I had been handling things just fine. My husband went to work for a while this morning. I don't know why, but after he left...this wave of fear just came over me. I kept thinking about the words in a book a friend gave me that says "How you respond to your diagnosis of cancer is your choice. You can deal with it however you choose.". So, I just kept telling myself that. I'll be damned if this stuff is going to run my life....especially this last week before surgery.

Anyway, your advice and words of encouragement have been invaluable. Thank you so much. Oh. My pre-surgery appt. is on the 19th. My surgery is still scheduled for the 23rd.

Thank you!
Jennifer

Hi Jennifer
Have you got a laptop you could take with you? www.readplease.com has a free download of text to speech, easy to use and good for distracting kids.
You have a good attitude please stay with us, ask what ever comes to mind, we are all here to help. Can someone you know update us while you are in hospital?
Take Care
Sunshine... love and hugs
Helen

Jennifer, this is a "Good Luck Wish" from Arkansas. John's surgery was almost 4 weeks ago and other than some tiredness issues and major food frustrations, he is doing very well. We will be thinking about you. Amy

Jennifer,

Will be wishing your surgery goes as well as it can. Also will be thinking of you and your family on the 23rd. Looking forward to reading your post-surgery comments and questions.
Remember the first steps into a new journey are the most frightful. There is light at the end of the tunnel. It will take you awhile to get there but you will!!!

All my Best, Danny Boy

Jennifer, You and your family will be in my prayers on the 23rd. Good for you for reminding yourself you can choose your response in the face of your fear. That's what courage is about.

Nelie

JENNIFER,

Good luck on the 23rd, my prayers will be with you.

I didn't have the good fortune of having found this group before my surgery. As you already know the support here is overwhelming. We really want to know how you are doing after the surgery.

Having just gone through this last month, I can tell you that for the first 10 days I didn't even want to go to the computer and for several days after, I only spent a short time checking emails each day. So it would be great if you could introduce a friend or relative to the site, so that they can keep us updated for you.

The waiting end of this is terrible. But, before you know it, the 23rd will be here. You have done everything you can and now it is up to the surgeon do his/her thing.

Good luck and beore you know it, you'll be on the mend.

Jerry

Jennifer, My thoughts and prayers are with you. You will do fine, you have an amazing attitude about all of this. God Bless you and your family. Love, Carol

I just hope my attitude is good AFTER the surgery! :-) I bought a write/erase board last night. Actually, it's a Fisher Price one that has a little sliding knob to erase the board. I figured my kids could have it after I'm finished with it.

I've introduced a friend to the site since my husband can be website challenged. He has promised to update all of you after my surgery.

Thanks again for the well wishes and support. It really helps my resolve to beat this stuff and come back stronger than ever!! I will not forget how much you have helped me and that my experiences can help someone else get through this in the future.

Jennifer

Oh, I forgot to say thanks Helen, for the tip on the readplease.com website. I downloaded the free application, and it works GREAT! I think it will be very useful and my daughter will love playing with it. :-)

Jennifer

Jennifer
Remember when you wake up from your operation, say to yourself IT'S DONE, also remember they will not ask you to do anything that is not DOABLE. Will you be nil by mouth?, I was for 3wks, you have not mentioned a feeding tube.
Don't forget over the next few days, anything you want to ask however silly, please do so.
Email me if you need to..
Sunshine... love and hugs
Helen

Jennifer,

Good luck with everything on the 23rd. I got my diagnosis on 5/23/01. I can't believe it has been two years already. I will pray for you and your family. You will get through this -- you may look back on it, shake your head and wonder how, but you will get through it. Please let us all know how you are doing.

I'll be thinking of you,

Barb