Thank you for the insight on radiation. My husband goes to UCSF in San Francisco and they have quite an extensive head and neck oncology department. He had so much radiation the first time around that they tell us he is not a good candidate for it again.
Bette

Hi Bette, my husband had this surgery in March.
It involved being cut from ear to ear. However the reconstruction surgeon was so great that looking at Kris you can not even see a scar.
His reconstruction involved formation of a tongue using free flap from his abdomen. However this just fills the space in his mouth and does not move. He can drink well but won't attempt anything thicker than moderately thick fluids. He does taste. Due to the laryngectomy he can not smell.
This is doable surgery, but it is difficult in the initial weeks. 8 months post op life is resuming a new normal and is really pretty good. Kris has just had a TEP speaking valve put in and I and others can understand his speech despite the challenges of both a laryngectomy and total glossectomy.
Hope all goes according to plan for you both. I will be here for any support you need.
Tammy

Tammy, Wow thank you...I felt like was the only one out there having gone through all of this.

I hope you don't mind but I have some questions that I never even thought to ask the Dr. Now supposedly this will be a partial glossectomy from the base forward on the right side. They don't think there are nodes involved this time. They are going to cut from ear to ear exactly where they cut for the lary. Did your husband have to alot of reconstruction on the outside of the neck and or face?

I hope Kris is getting along with his TEP. Reggie really sounds close to what he sounded like with his real voice. It's very strong and deep just like before.He has even tried hard to use the hands free TEP but because his stoma is so deep his base plates tend to blow out right away because of the amount of pressure needed.

Thanks again Tammy.

Bette

Hi Bette, sorry re the delay in replying. My son got married yesterday.
Kris had no reconstruction on the outside of his face. However he had major reconstruction in his mouth and pharynx and extensive bilateral radical neck dissections. Luckily there was no nodal involvement.
Kris did not have a partial glossectomy. His was a total glossectomy. His tumour extended down into his vocal chords hence he also had a laryngectomy.
I also feel very alone on here as no one else seems to have had this extensive surgery. It certainly has huge implications on life and the recovery is slow and difficult. But, we are getting there. You guys will too.
Kris has had the TEP for 10 days now. Another learning course. At the moment he often sounds as though he is underwater. He has gone from extreme dry mouth to now, having excess oral secretions. This has been since the surgery. I wonder if the flap is sweating in the closed hot environment of his mouth? Mostly I can understand him but he does have to dry his mouth out first. We see the surgeon again this week so will check with him.
Truly Kris has no obvious visible scarring or disfigurement.
I know all will go well for your husband and I look forward to hearing how you are both getting on. Message me anytime you think I can help or if you are concerned etc.
Tammy.

So tomorrow we are going to the appt. with the reconstructive surgeon. Hopefully we will get a date for the surgery and have things nailed down a little bit more. The waiting and the not nowing is the worst I think.

Hi Bette, make sure you ask exactly what surgery is planned. How much of the tongue they will have to take for clear margins. Will any other structures be removed? What reconstruction will they do in his mouth//oropharynx? Where will they take the flap from to refashion the tongue? Will he need a neck dissection? What will the postop period involve? How long will he likely be in hospital.
Is Reggie a candidate for further radiation? How will he be fed, will they insert a PEG tube?
Of course having already had a laryngectomy his airway will be secure so shouldnt need a trachy tube inserted.
Once you get all your questions answered you will feel more confident and will cope better with it all.
Thinking of you both.
Tammy

Thanks Tammy. I have started a list of questions and will add some that you posted that I hadn't thought of. Ifanyone else has anything to add about what questions to ask, please, post them. I will read them all!!

Good luck tomorrow.

We saw the reconstructive surgeon today. A little bit more than we first thought will take place. He said the oncologist, Dr.Wang, will be removing some of the tongue and some of the throat. How much will be determined once they open Reg up and have a look see. He will do a free flap from the thigh to do the reconstruction. He already has the laryngectomy and they are optimistic that they will be staying above his stoma for the excision of tissue. It really depends of course on the margins. Tentatively surgery is scheduled for De. 5 but that is not set in stone yet. Will be receiving a call by the end of the week. Wow, I wan't expecting part of the throat (esopagheos) to be taken. He will not be able to eat or drink anything for the first week. Dr. Knott says he has to make sure that everything is waterproof and no leaks. Then after that he can have liquids. Two weeks out they will begin to give him soft diet as tolerated. In the mean time he will have a feeding tube through the hole where is TEP goes. I gues that's better than a peg tube. About 14 days in the hospital. It really is a daunting thing that he will have to go through. But that darn cancer will be gone oncwe again!!

Are they planning to reradiate??? Good luck hopefully surgery is sooner! Hugs