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