After radition and being free for a little over a year. It came back on the base of my tounge. Bio. and then surgry. Surgry again. Came backin same place again. Bio. positive. Grew very fast. Now stage 4 in 6 months. Now the only thing to do is have my tounge completly removed, voice box, removed, and a perminent track.
Have to have it done by Dec.3 or finish out the rest of my life with it; for how long? With the operation, the quality of life wont be there and the possabilty of the cancer coming back is very high. I am not at the hospital yet. Can anyone out there help me with this issue? First time on board and scard.

Good Morning David,

You are not alone in being scared. My husband is scheduled for a partial glossectomy with reconstruction surgery. They are taking part of his throat as well. His is stage II. You will learn that the stage is not a death sentence. It's only a way of measuring the cancer. He already has a laryngectomy with a permanent stoma (trach). That happened in 2007 on the second go round with the big "C". This is his third time having cancer. The first was in the soft palate.

It is important to try and seek treatment, whatever it may be, at a Comprehensive Care Center. I'm not familiar with Virginia but I'm there is one in the area. Second opinions and the best possible care can change the outcome.

Quality of life doesn't have to be compromised. My husband has manage very well with the lary. His voice is as strong and very close to what he used to sound like before the surgery. It's a little inconvenient at times but git beats the alternative.

They will be doing this next surgery of the tongue and throat and then reconstruct what is removed with what is called a free flap from his thigh. The surgeon tells us that he will be able to eatr, drink and talk once he heals and has some therapy. Granted, it will not be easy for several month but he will make it. He is already looking forward to us returning to our motorhome for travel.

Good Luck and come here often. Lot's of helpful information and caring people.

Thanks so much for the help. What is a lary? How does he talk because I was informed that I would not talk again. The tounge being removed and sow to the bottom of the mouth and the voice box removed. I will check out a comprehensive care center.

David a laryngectomy (lary) is when the vocal chords are removed.
When the surgeon does the laryngectomy, instead of just having the esophagous, there is an additional tube like area that becomes the trach. Otherwise you would drown or aspirate into the lungs. Look up laryngectomy on google under images and it gives you a great visual. There is a one way valve (TEP)tracheostoma esophageal prostisis that looks like a very small sewing bobbin that is inserted into a permanent hole. He wears a glued on base plate (very thin plastic) around the stoma. To that base plate is attached a HME (heat and moisture exchange). It is also a sort of valve. That when pushed by the finger occludes the air from escaping through the stoma and engages the valve valve inserted in the airway. By doing this he can talk like anyone else. It's really quite amazing. Google all these things and you can get a visual.

As far as the tongue being sewn to the floor of the mouth. That's another story, but with reconstructive surgery there are many on this site that speak just fine. EReg has not had that surgery yet. That will happen on Dec 5. That's why it is important you get to a CCC.There is a resource on this website where you can look up any CCC in the country. You have to go back to the home page and look down the left side of the page. I'm not sure exactly, but I think it is under resources. Be a little patient and one of the old timers on the site will be along shortly to give good advice and links to info.

Ditto what Bette said. While salvage surgery like yours does impact "quality of life", not getting surgery impacts the "quantity of life". Your choice is very simple, get the surgery or die. You will be surprised what you can and will adjust to in terms of speech and eating. Why give up now?
No one is guaranteed that the cancer won't come back. This is my third time around. Life can still be good and worth living no matter what the side effects. No shame in being scared.
Scroll through the posts and read the signature lines of many posters who have had similar surgery and survived and thrived.
This is a doable fight. Here is a link to the CCCs
The key to success though is to find a surgeon who had done this procedure regularly and successfully which usually means an affiliation with a CCC.
CCC 2012 list
Unfortunately, we don't have any in Virginia. The closest to Northern Virginia are Lombardi CCC in DC at Georgetown Hospital and Sidney Kimmel CCC at John Hopkins in Baltimore, MD.
Keep the Faith
Charm

David, welcome to OCF! So glad you have found this site to help guide you with info and support! You are in the right place for assistance.

Sounds to me like time is very important in taking care of this by surgery. The very best chance for treating this successfully would be to go to a CCC immediately. They will have top notch medical professionals who will work with a team based approach. The CCC will have the brightest and best specialists which in turn gives you the very best chance to beat this.

Sure your quality of life will be impacted. Adjusting will take time and effort. But it can be done! So much better to have to learn to adapt to a new way of life than to not be here anymore. Ive had to adapt to major changes too so I understand where yo are coming from. You can get thru this and live a productive life even with handicaps.

Best wishes!!!!

Hi David. I know that this is very scary.
We were in your exact position in February this year. We were told that Kris would be dead within 12 months if he did not have this surgery His initial reaction was "NO way. I'm not having that done" However the alternative was not great either, much worse.
Kris had a total glossectomy , Laryngectomy and bilateral radical neck dissection in early March. They took a free flap from his abdomen to fashion a tongue which simply fills the space in his mouth. It does not move or taste.
I will be honest and tell you that this surgery was not easy and the following months have been difficult. Kris's quality of life has been hugely impacted. But, everything is slowly getting better. He has been taking all his nutrition by mouth since the 4th week post op, albeit only liquids. He can also taste, but not smell.
Communication has been very challenging. He has used an IPad with Speakit app as the main form of "talking". Last month he had a TEP speaking valve inserted and is now learning how to use this. Of course speech without a tongue and voice box is difficult, but it is amazing how he does manage to form words that are indeed intelligible. The SLP doesnt know how he does this, or how he manages to swallow.
I want you to know that there is life after this surgery and it is actually okay. He is back driving again after huge issues with his shoulders post neck dissection. He goes to the gym and is back mowing lawns etc.
The main issues are that we are social creatures and life does revolve around eating and talking. This is difficult and others do not know how to deal with Kris. Perseverence, love and understanding. Kris and I recently saw our first child married and although he himself did not deliver the father of the grooms speech, he did "talk" with quite a few strangers. Other guests did approach him and sit with him for a while and they did have a discussion.
Life does have meaning and is worthwhile.
Ditto what others have said about a CCC.
I wish you the best.
Tammy

Davids you've heard from some amazing people Bette seems to have a lot of experience with what you are going through... everyone is terrified of the possibility of a recurrence. Many have gone through it mulitple times. There is definitely life after what you have to go through but I absolutely support what everyone else here has said. TIME is of the essence first off whatever you do do it ASAP. Secondly a CCC will offer you the absolute BEST treatment, with some of the best drs. they have experience with this type of cancer as cancer is WHAT they do. They may have alternatives for you as well. Do try to get to one of them if you can! hugs and welcome. I am sorry you had to join but its a good group to be a part of. PS education is the best weapon and just because someone says that there is slim to little hope... that isn't always the case. Not everyone follows the same path.

David: we are all in your corner. You're facing things that seem unthinkable... but yet many here have been through them and are thriving. I send you all good thoughts and courage. All the advice you've gotten from these knowledgeable folks is excellent and I know you're taking it to heart.

Thinking of you and wishing you all the best.