My husband saw the surgeon on Monday abd the news was not as good as we had hoped. We already new the biopsy had come back as SCC tumor 4 cm at the base of the tongue. We were hoping for robotic surgery, minimally invasive, with more precision and shorter recovery. When we left the Dr.'s office, I was numb. The plan is to do 2 surgeries on the same day. The first team will do the disection of the tumor and surrounding tissue as needed. About 5-6 hours. Then the second team will perform the next surgery of reconstruction of the tongue and surrounding tissue as needed using a free flap procedure with tissue removed from the thigh. I came home and did some research on line and OMG! I guess this must mean they are planning on taking some of my husband's face... Has anyone been through this and if so what's up?

Hi Bette. I know where you are right now. Its a HUGE shock when they telll you about the surgery. I had similar surgery. It was difficult but I am now 6 years later living a fairly normal life. I have a signifigant speech impediment because I lost all of my tongue but many people who only have a portion of thier tongue removed will regain almost full speech. Even though mine is compromised I still get by very very well.

Unfortunately tongue cancer doesn't usually respond well to just chemo and radiation so the best chance for a cure is this drastic surgery. It sucks but you gotta do what you gotta do and life goes on. It sounds horrific but your husband will heal and recover.

The body (and mind) adapt and compensate. Its amazing what can be overcome.

So I am here to give you some hope - and don't be afraid that this surgery will ruin his life.

Please feel free to ask me any questions. You can send me a private message too

Hi - there are quite a few of us who've been through this surgery. It's not that bad. Very recoverable though it sounds daunting. I was under the knife for 14hrs. They did the Same thing to me. Recovery wasn't nearly as bad as radiation. take care.

Bette,

Sorry if I have asked this before but were his cells tested for HPV?

No they haven't been. And that is always in the back of my mind. However, he did smoke and drink for many years so I doubt the docs would even consider that.

I appreciate the input. He can't have chemo and read as he had it the first time he had cancer of the soft palate.

They can do a second round of both there are a few members here who've been through it a few times. hugs.

Bette,

Would be helpful if you include a Signature Line with his history like most of us have so responders have a more complete picture when reading a current post.

Many patients assume radiation can only be given once. There are a few here who have had it twice. One person even went thru it 3 times. By being treated at a NCI cancer center they will be the most up to date and give the best chance for beating this. A small cancer treatment center wouldnt have the experience and may not know its possible to have radiation more than once for oral cancer.

Ditto what Christine said!!!

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

No there will no radiation.

hopefully they'll get it all!

Heard from San Francisco on Friday. Reggie will have surgery on Dec. 5th. We plan on going to the city on the 4th so I can get settled in to my home away from home. But I'm only 5 blocks from the hospital. Dr. Wang told us it is stage III or IV. Which will be determined during pathology of tumor. He's confident no nodes involved. We both agree that we just want to get on the other side of this surgery so that recovery can begin. We want to go to New Orleans in our RV for Mardi Gras. I plan on posting the whole time Reg is in the hos[pital. I hope you all will be there for me.

Bette,

We will all be here, rooting for you and Reggie!

Hi Bette, now you have a date and a surgical plan. Great. I found that these two things helped me focus and I could move forward. I still had wildly swinging emotions, but having that all important plan in place eased a lot of my fears of the unknown and the thoughts of impending doom and gloom that nearly drowned me.
For me, it was terribly important to be there at the hospital most of every day . Being close( I was a 5 minute walk ) to the hospital just makes it all so much easier. I went back to my room at the lodge for lunch and a rest and then returned to the hospital after an hour or two .
Do post here regularly, I will be keen to read how you both get on and to support you if you need.
Tammy

So glad they are moving relatively quickly. Best of luck - we will be here!

Thank you all very much. I will be a pest while he's in the hospital, don't worry....

Bette - Hope everything goes really well with Reggie's surgery on the 5th. Come here often - there is always someone here to listen and offer support. Thinking about you and Reggie and hoping for the very best outcome!

Hi everyone,

I've been looking around the OCF website. I've noticed a list of books for sale...Can anyone recommend which ones to buy?? I will need some reading material for the day of the 12 - 14 hour surgery. I've 50 Shades of Grey too many times already...:-)

Anything that is light reading might be best. Everyone is different of course, but on my son's surgery day, I couldn't concentrate very well and what helped me tremendously was having my daughter and a friend of mine come with me. They really helped to keep me thinking positively. In the surgery waiting room, there was a monitor that updated everyone on how the surgery was going for the different patients. My daughter and friend stayed the whole day, made me go to lunch with them at the hospital cafeteria.- I couldn't eat except for two bites of a turkey sandwich which I took just to please them! But it kept me busy. After the surgery, there was a special smaller room connected to the surgery waiting room, and the surgeon took us there to update us on how the surgery went. The two special people with me were really helpful in asking the right questions and helping me to remember later what the doctor said. Bette - it would be great if you could have someone with you, but if you have a laptop or smart phone with you, then you can keep in touch with us here, as well. I'll be thinking of you and your husband on surgery day and hoping for everything to go the very best way possible!

Thanks Ane-Marie,

I'm pretty sure both of our daughters will be there for the duration of the surgery. We were all together during Reggie's laryngectomy which was a 13 hour surgery and a couple of hours waiting for him to get settled in ICU. We will probably do what we did last time. Have some breakfast and then walk around San Francisco for awhile. It's close to Christmas this year so shopping is always an option. But I know last time I spent the first 2 days in the ICU with Reg. The staff was very generous and let me sit with him the whole time. So those hours will wane with nothing to do. I will take my crotcheting and I ordered some books from Amazon today. Plus my laptop will be with me so I can always jump online. Thankfully the hospital is only 5 blocks from my hotel room, but even that is too far in those first 48 hours when things are really critical. I'll pack my toothbrush and my teddy bear and will be there for the duration. When we were there last time the nurses even let me shower in the patient shower room. They really were quite remarkable. My youngest daughter lives in the east bay of San Francisco so she will come often. Our oldest daughter must return to Visalia and work. This a very busyy time for her as they are gearing up for tax season. I'll get through just need some things to keep my mind busy.

I'm curious about something on the site. In the box where it shows who is online, it lists everyone's name, the amount of guests and then says a number of spiders. What might they be referrring to?

Bette, a spider is the thingy associated with a search engine that crawls all over the web cataloging internet posts, websites etc so that when you do a google search (or some such equivalent)using a keyword - the topic comes up.

Thanks Karen

Bette - I'm so glad to hear that you have such great family support! It really does help to have others with you on surgery day. Sounds like you have things well in hand with all the excellent preparations you've made. Just be sure to take care of yourself, as well. I crochet and knit, too and it does keep the mind occupied.

That's correct, I had radiation 3x to the same area, and a few others here did as well, and chemo 2x with my recurrences. A flap improves healing, and makes it possible to do Reirridation with the new tissue. The reason you may read no chemo after the first time, is that the body can develop a resistance to it after a while, but they usually switch to another type. Best of luck.

Bette, my thoughts are with you and your family. I know there are amazing docs up in SF so you're getting the best.

Paul as far as we know right now there will be no rad or chemo. The docs said last time that he had too much the first go round. I am not sure what that means. I am going to RO and MO that did those treatments to day to get those records so I can see for myself. It was 7 years ago and really a fog in my mind. I want to be more informed on the matter in case it is an option. Thanks

With all those treatments, surgeries, your husband certainly did have enough. Your doctors will know best, and may feel surgery is enough, and more can effect QOL or risk outweigh the benefit. Every case is different, and I was lucky. Doubt if I can have anymore either, at least in the same area. Good luck with everything.