Hello All - I've previously posted about my biopsy and positive results for SCC of the tongue, but am now ready to go to the next step.

I saw Dr. S and Dr. B at UCLA. Because the lesion is wide and thin, Dr. S felt he would be taking enough tongue tissue that my tongue would be very thin on the right side; therefore he wanted Dr. B to check me for tongue reconstruction. Dr. B agreed, and on Oct. 11 I will have my surgery at UCLA. He also felt there was some nodularity on the floor of my mouth that was suspicious, although it didn't show up as anything on the MRI. So they will biopsy it and possibly have to remove a couple of teeth to work on it and then also do some reconstruction on the floor of the mouth -but didn't think it involved the mandible (also didn't show up on MRI). I feel good about both of them and was really impressed by everyone at UCLA - very helpful and informative. But it does seem that every time I see another Dr. they add "just a little more" to the treatment!

They tell me it is quite extension and takes a long time (8-10 or 12 hours!) I will have a tracheotomy for 5 days and be in the hospital for about 7; plus have numerous other drains and wounds!

They will remove the lesion to clear margins (it is on right underside of tongue - they think they will take most of the underneath layer of tissue); do a free flap reconstruction of my tongue with tissue and artery and vein from my left wrist (amazing!);and do a neck dissection. If they have to, they will also remove a couple of teeth and do some work to the floor of my mouth and some reconstruction there, also. Dr.S said the worst part was having a trach for 5 days, but he said the prognosis is very good. Dr. B has done over 800 tongue reconstructions in the past ten years, and told me that a year later most people feel their speech and eating are normal. (I can handle that!)

I'm 55, and live alone, but my mother is coming from Oklahoma to stay with me for as long as needed, and I have two children (one married) here in California who will also help, but can't be with me constantly. I also have a wonderful church family and network of friends, so feel a great deal of love and support.

And it's great to have this site to learn about and hear from people who have been through this.

Any advice or info is appreciated.

RileyMc - do you know we can use my laptop while I'm in the hospital (I may not feel like it at first, but would be great for my kids to be able to when they're there.)

I stayed at the Tiverton House last weekend, so have a room there part of the time so Mom and anyone else will have a place to sleep and rest.(have to go somewhere else for a couple of days)

Everything has fallen into place beautifully, and I feel good about it. I really liked the ENT in SLO, but she didn't talk about reconstruction, and if I had awoken from surgery with the news that she had to take more of my tongue than anticipated, and that I would have to go back and have the reconstruction, I would have been devastated.

I'll post when I can in the next couple of weeks, and try to get my mom and kids on the forum, too -at least for information.

I'm remarkably calm and peaceful - attribute that to God and all the prayers that are being said for me - I'm usually rather anxious and worry - and I have chronic depression. But I'm doing well right now, and staying positive. Certainly not looking forward to the next month, especially, but it helps so much to have a place like this to get informed. I was so much better prepared for all they told me after researching here - I wasn't so shocked or surprised.

Rhonda

Rhonda, while not the same surgery, I had the long OR time and came out with the 5-day trach. Just one hint - have your mom or whoever will be there when you awake from the anesthesia, have a white board or paper and pencil for you because you will have things to say and questions to ask, and no way to talk.

A vein was taken from my arm and replanted in my mouth. To make sure it was working, about every hour, day and night, someone stuck what seemed like a microphone in my mouth to hear the blood flow. This may happen to you too. And another amazing thing is that while it looked like a shark had bitten a piece out of my arm, within two weeks it had all filled in.

I am sure you can use your laptop, and by the end of the second day I would have been ready to because even though I was hooked to an IV and looked like elephant man, I was up and roaming.

Expect lots of swelling, and expect a lot of it to go down before you are discharged, and much more in the next few days.

Bottom line, I looked a whole lot worse than I felt, and I went home with no need for any pain meds.

I am so happy that you have docs you are comfortable with and that your wait is almost over. While this surgery truly is a Big Deal, it is something you can handle. We will be looking forward to reports from you.

You two are pretty amazing. I thought I had been through a lot.

Joanna, no wonder you have so much to contribute.

Rhonda, you have found a wonderful site that will be of great help and comfort. Don't hesitate to post especially when you don't feel up to it. That's when you need it most.

Rhonda, you are going to have some similiar surgical parocedures as JOhn had. The writing board is essential. The trach scared me beforehand, but was very manageable and did not bother John too much. The swelling immediately after surgery will scare your family, but it looks worse than you will feel. I would suggest you ask your Doc's about the possibility of requesting a private room for you [if it was Doctor requested, our Ins. company paid for it] having a quiet room to ourselves was a Godsend to us. John stayed in the hospital 6 days after that surgery. Alert your family to make a list for what to have at home before you come home. You will only want to rest and sleep, so groceries in the house, someone answering the phone, someone to get the meds. from the pharmacy, etc. should be assigned. I assume you will have a peg tube with this kind of surgery. If so, get the nutrition you will use lined up ahead of time if you can. And if you have the peg, alert your pharmacist that all meds. need to be liquid or crushable. Be sure you have a reliable thermometer in the house [we use the in the ear type]. Ask about cleaning the graft wound and other wounds ahead of time so you will have that stuff in house.[I am saying this because I came home from the hospital with a long list of "stuff" to buy and I did not want to leave John alone while I went out and found the stuff. If youall can stock up on some frozen foods and canned goods for your Mom to have in the pantry when you get home, that will be helpful too. Hope you get to use your laptop so we can share your progress. We will be thinking about you. Amy

Rhonda:

I wish you well and a speedy return to normalcy. Know that you are not alone. Many many people are wishing you the best. I'll remember you in prayer daily.

Best wishes,

Audrey

Rhonda
Joanna has covered everything, but you may also find it useful to make up some flash cards before hand.
It will pass quickly.
Best wishes
Sunshine...love and hugs
Helen

Well, shoot - I just typed a nice long message telling all of you thank you for your advice and encouragement, and hit a wrong key and lost it! (Stupid touch pad! - I better take my wireless mouse to hospital, I will probably have even more trouble using the mouse pad right after surgery!

I am so inspired by how you all are willing to take the time to encourage and help others while you are going through so much, and that those of you who have finished treatment are still helping others. I am determined to give back like that as soon as I can, and my first step is putting you all on my prayer list. I will be more active as soon as I can. I'm putting everything into gathering information and preparing for surgery right now.

All my best to each of you.

Love,
Rhonda

Rhonda
If you want to use your laptop to talk, download www.readplease.com. Free easy to use text to speech software. Very good if you have children to deal with, they love it.
Sunshine.. love and hugs
Helen

Helen, that is Mega Cool! I wish that had been available for the couple of weeks I was voiceless following rad. What a help in so many situations for so many people. Thank you. I will pass this along to others who can use it.

Hi Rhonda
Just reading you page with interest, I had my Op in July 06 they used my leg for part

We had a friend bring a kid's "Doodle Pad" in to the hospital when my husband had a trach. It was great for short messages and saved a whole forest of trees worth of paper. I highly recommend it

I started thinking my above post was not very clear. A "doodle pad" is a small Magna Doodle. The one my husband had was about the size of a notebook and had a handle for carrying. The stylus was attached with a string. He could write short messages and then slide the bar across the bottom to erase it. His handwriting got sloppier as he started writing faster, but the only real problem was that he wouldn't always show everyone in the room what he had written before he erased it. Somebody would be laughing at his joke and no one else got it. His friend's found it at Kmart for less than $10