Tongue reconstruction surgery

Miga

Hello All:

My husband was just diagnosed with recurrent tongue cancer.  We are still waiting for an appointment, but I think he is looking at losing at least the majority of his tongue (he has already lost 1/3 first time around).

I have two questions: 

1) Who is the best tongue reconstruction surgeon on the East Coast?

2) Does the reconstruction take place during glossectomy or is it/can be a separate surgery?

Thank you so much for all and any info.

Miga

ProustLover

Dear Miga:  My husband's path

Dear Miga:  My husband's path has not gone that far, so I wait with you for response to your questions.  I'll be thinking of you and wishing the best.  My husband lost 1/3 of his tongue in 2016.  Prognosis seemed good after surgery. Sad to say, it metastasized into his neck within 15 months.  Treament included 3 aggressive rounds of cisplatin and docetoxel, then modified radical neck dissection.  The chemo worked well, but viable cancer remained.  We're now mid-way through radiation and more chemo (carboplatin).  DId your husband receive any treatment other than surgery at first occurrence?  How long did it take until it recurred?   My husband is not pleased having his tongue irradiated along with the neck.  He seems to think recurrence is not likely at the same spot.   I'm thinking that as long as he's going through radiation, hit the likely culprits while you can.  You're in my thoughts.  Stay strong.  

Miga

ProustLover said:

Dear Miga:  My husband's path

Dear Miga:  My husband's path has not gone that far, so I wait with you for response to your questions.  I'll be thinking of you and wishing the best.  My husband lost 1/3 of his tongue in 2016.  Prognosis seemed good after surgery. Sad to say, it metastasized into his neck within 15 months.  Treament included 3 aggressive rounds of cisplatin and docetoxel, then modified radical neck dissection.  The chemo worked well, but viable cancer remained.  We're now mid-way through radiation and more chemo (carboplatin).  DId your husband receive any treatment other than surgery at first occurrence?  How long did it take until it recurred?   My husband is not pleased having his tongue irradiated along with the neck.  He seems to think recurrence is not likely at the same spot.   I'm thinking that as long as he's going through radiation, hit the likely culprits while you can.  You're in my thoughts.  Stay strong.  

Hello ProustLover!

Hello ProustLover!

I am so glad you responded, thank you!

It took me forever to come back here (lots going on right now).  My husband had his surgery in 2015 followed by radiation therapy.  Radiation ended in 2015 and he was healing way better than expected.  The entire 2016 was good, although he had issues with swallowing and dry mouth.  In 2017 he started suffering from constant pain in his mouth, he kept on getting ulcers, trush, etc.  He was at the doctor's office anywhere from once to four times per month.  Dr. thought it was an aftermath from radiation.  In the spring on 2017 he had a biopsy that came back negative, but his pain has not gone away.  Finally a tumor showed up and the biopsy was done a the beginning of March.  

How is your husband reacting to radiation?  Is he on a feeding tube?

I truly wish someone could answer my initial question.  Anyone please?

Thank you!

ProustLover

I guessed you were busy! 

I guessed you were busy!  Good to hear from you again, Miga!    

Husband had 24th rad. today with 9 more to go.  He would be handling it well, except a large "mucosal outbreak" on tongue occurred early on...by end of week 2.  Even though his swallowing is still good, his tongue is too painful for even soft foot.  He is maintaining weight via liquid supplements taken by mouth, but did get a PEG at doctor's strong recommendation when tongue got so bad. His skin still looks and feels good (using aquaphor).  He is vigilant about sipping water all day.  Starting to feel some fatigue.  Starting to seem more withdrawn.  For my part, I haven't slept well in about six months.  I do much better on days when I've gotten some sleep!  

His cancer started with leukoplakia that was monitored for several years before turning to cancer.  (HPV+)  When it metastasized into his neck, we questioned whether he shouldn't have had radiation/chemo the first time around. (The  cancer was early stage, the doctor thought he got it alll...radiation was not even presented as an option).   Your story has made me feel  better about missing that step.   

I am so sorry that he (and you) are facing this again after what you've been through...and that so much pain hs been involved.    Hoping that someone out there has info about tongue reconstuction surgeons and process.   You'll stay in my thoughts...please send good vibes our way!   

 

Chicklette

Massachusetts Eye and Ear Infirmary

https://www.masseyeandear.org/find-a-physician/r/richmon-jeremy

 

Hello.  Mass Eye and Ear is a great hospital and I recommend you check them out.  I can’t find the vide, but I remember seeing one where someone had tongue reconstruction surgery and it was very successful.  I wish you the best of luck!

ProustLover

We live near Buffalo NY,

We live near Buffalo NY, where former Buffalo Bills quarterback Jim Kelly coninues to struggle with oral cancer.  He just underwent reconstructive surgery to his jaw at Mount Sinai Hospital in NYC.  The surgeon was Dr. Mark Urken.  I have no first hand info on Mount Sinai's head and neck department, but I'm guessing Jim Kelly found one of the best.  

Twostepr

Just thought I would add

Hi Miga,

For what it's worth, I live in SC and was diagnosed with tongue cancer in late 2016. The doctor that originally found my cancer was in Columbia but he referred me to MUSC in Charleston to see Dr. Terrence Day and Dr. Joshua Hornig at the Wellin Head and Neck Cancer Center there. MUSC is considered #11 in the nation. I'm not sure howw good it is to be #11 but....  I had a lesion on my tongue on the back, left side, and two swollen lymph nodes on the right side of my neck.  I had my first surgery in March of 2017. Dr. Day removed aprox. 70% of my tongue including the "flap" (epiglottis), and did a radical disection on my neck to remove the lymph nodes. Then, Dr. Hornig stepped in and reconstructed my tongue using tissue from my left thigh. The incision on my thigh was approx. 14 inches long so I must have a lot of tongue in there. All of that surgery was done at one time, 11 hours surgery and 8 days in the hospital to mend. Since then I have had two more minor surgeries to "tune" the flap, all at MUSC. All in all, I have no complaints about the surgeries nor the doctors nor any of the care I have received from MUSC. 

The part that nobody saw coming was that I developed severe radiation fibrosis in my neck from the radiation treatment I had to have four weeks after my first surgery to "clean up the questionable areas". So, even though we all consider the surgeries to be successes, the fibrosis has my neck and all of those muscle groups locked up tight. Even though all of my parts have been corrected, I still have a trachea tube for breathing and I am still unable to swallow a year into this. So, all that said, MUSC is a pretty good place for the surgery but the surgery is not the biggest part of the challenge. The hard part comes after the surgery is over. Just don't be fooled by false promises no matter what doctor you may choose. I think MUSC did a great job of removing my cancer and rebuilding my tongue. I just wish somebody knew more about how to treat the fibrosis.

Sending you all of my best wishes.

LynnBin

Dr. Clinton Kuwada at

Dr. Clinton Kuwada at Hartford Hospital does Microvascular reconstruction surgery - reconstruction of tongue using the patient's live arm tissue skin graft.  

I did not end up needing that surgery, but was going to give him a try.  I talked to a 75 year old patient who had it and he was able to speak and eat.

 

jnijose51

Eight months after tongue surgery

Hello everyone.

I just joint this community searching for orientation on what to eat after 8 months tube feeding (G tube). 

Finding cancer in my tongue was a LONG process of more than 18 months. I got my surgery last August 2017 when removing the cancer took 75-80% of my tongue.  Tongue reconstruction from tissue skin graft from my left arm was performed at the same time, but it didn't work; I lose the portion added to my tongue that it was inserted for this purpose.

From August 2017 to March 2018 I was fed thru the "G" tube with the special nutritional formula Lucerna 1.2 cans, until the supply company stopped delivering this formula; then I started with soft, liquid form of food.  I have great difficulties eating this way because of the thick and sticky saliva in my mouth that I can not get rid of it. 

Does any one knows or have the experience of eliminating this type of saliva?  My hope is, IF I can avoid this saliva in my mouth I will be able to eat more.  So far after cancer was detected in my body, I lost 50 pounds.

All comments will be appreciated.

DanceSkater

jnijose51 said:

Eight months after tongue surgery

Hello everyone.

I just joint this community searching for orientation on what to eat after 8 months tube feeding (G tube). 

Finding cancer in my tongue was a LONG process of more than 18 months. I got my surgery last August 2017 when removing the cancer took 75-80% of my tongue.  Tongue reconstruction from tissue skin graft from my left arm was performed at the same time, but it didn't work; I lose the portion added to my tongue that it was inserted for this purpose.

From August 2017 to March 2018 I was fed thru the "G" tube with the special nutritional formula Lucerna 1.2 cans, until the supply company stopped delivering this formula; then I started with soft, liquid form of food.  I have great difficulties eating this way because of the thick and sticky saliva in my mouth that I can not get rid of it. 

Does any one knows or have the experience of eliminating this type of saliva?  My hope is, IF I can avoid this saliva in my mouth I will be able to eat more.  So far after cancer was detected in my body, I lost 50 pounds.

All comments will be appreciated.

Hello jnijose51

Welcome to the H & N forum but sorry you had a reason to join. 

Do you still have your tube ?   Why did the company stop delivering your tube food ?   There is a tube food  called Isosource 1.2.  You might consider it until you can eat enough to keep up your weight.

I have the same problem you do  (for a different reason).   When I eat,  I get a thicky saliva.  However, I have found that if I eat things at room temperature or slightly warm, the saliva problem isn't quite as bad as when I eat or drink something that's cold.  I still have a peg tube but I eat creamy soups, different flavored applesauces, and yogurt.  I'm sure there's other things I should be trying.

I mentioned my problem (the sticky saliva when eating) to my radiologist oncologist.  He advised me to get more fluids (water) into my body (by drinking or tube).   I did that and the problem became a little less than it had been.   Don't over hydrate but try getting more water in your system and see if it helps.

Jan

 

LynnBin

jnijose51 said:

Eight months after tongue surgery

Hello everyone.

I just joint this community searching for orientation on what to eat after 8 months tube feeding (G tube). 

Finding cancer in my tongue was a LONG process of more than 18 months. I got my surgery last August 2017 when removing the cancer took 75-80% of my tongue.  Tongue reconstruction from tissue skin graft from my left arm was performed at the same time, but it didn't work; I lose the portion added to my tongue that it was inserted for this purpose.

From August 2017 to March 2018 I was fed thru the "G" tube with the special nutritional formula Lucerna 1.2 cans, until the supply company stopped delivering this formula; then I started with soft, liquid form of food.  I have great difficulties eating this way because of the thick and sticky saliva in my mouth that I can not get rid of it. 

Does any one knows or have the experience of eliminating this type of saliva?  My hope is, IF I can avoid this saliva in my mouth I will be able to eat more.  So far after cancer was detected in my body, I lost 50 pounds.

All comments will be appreciated.

Thick, sticky saliva

I have very thick, sticky saliva (6 weeks post Rad/chemo).  I am experimenting with Mucinex, but at very small amounts.  If I use recommended smallest dose, it dries out the saliva - but then it is stuck right where it dried out; I am unable to move it, get rid of it.  That makes me feel panicky.   The doctor offered me a suction machine, which you may want to try.  I find using very warm water w/ salt can break it up for short periods, or help release it from behind the nasal passages.  Sleeping is not really possible. 

I lost 50 lbs, and had to get a PEG (Feed tube) am getting all my nourishment and liquid that way; but seem to have forgotton how to swallow.  Not good.  A challenge before me, getting off the tube and learning to eat again.  

I have viscous lydacane which offers temporary numbing of the mouth and tongue; I transferred it to a small spray bottle so I only use a little at a time.  Maybe you'd find that helpful. 

Best of luck and patience to you.

Lynn

jlew64

Was the surgery worth it?

I am newly diagnosed Stage 3 squamous cell carcinoma of the tongue. I am scheduled for surgery next week and they are telling me they will take approximately 40% of my tongue and then recosntruct it with tissue from my left arm. My thinking is this... I will be 65 this year and have several other health issues. After reading some of the posts here of what appear to be mostly unpleasant stories about life after the surgery I am wondering if I should have the surgery or opt for less invasive treatment and take my chances. If I was 35 it would be a different story but at my age I'm wondering how long I can really expect to live... so why go through a disfiguring surgery. For what it's worth, I am scheduled for a second opinion from a non-surgeon oncologist 2-days prior to my surgery.

wbcgaruss

jlew64 said:

Was the surgery worth it?

I am newly diagnosed Stage 3 squamous cell carcinoma of the tongue. I am scheduled for surgery next week and they are telling me they will take approximately 40% of my tongue and then recosntruct it with tissue from my left arm. My thinking is this... I will be 65 this year and have several other health issues. After reading some of the posts here of what appear to be mostly unpleasant stories about life after the surgery I am wondering if I should have the surgery or opt for less invasive treatment and take my chances. If I was 35 it would be a different story but at my age I'm wondering how long I can really expect to live... so why go through a disfiguring surgery. For what it's worth, I am scheduled for a second opinion from a non-surgeon oncologist 2-days prior to my surgery.

The Big ?

That is how long will we live? Is it just surgery or are you getting radiation and chemo follow up? How long is the recovery period and what are your docs telling you as far as how well you will feel with your new tongue. Certainly, it won't be the old you but when you are talking cancer most all of us on here had many new changes after treatment to get used to and it is called our "new normal". Many have had treatment and adapted to our new normal and got on with life and enjoyed living, you will too, things are just a little different now. You will have to work with your physicians here and get all the input you can and use your gut feeling somewhat. What are the less invasive treatments they are saying would work and what is the success rate with your kind of situation. None of us knows how long we have but if you don't address this and you live another 20-25-30 years or more you may well wish you would have and that would be one of those "woulda, coulda, shoulda" moments. As we always say on here NEGU "Never Ever Give Up".  God Bless

Skeeter18

surgery

My husband has had radiation and chemo treatment for a tumor in the base of his tongue. He has no other signs of cancer else where in the throat. He did 39 ratiation treatments and 8 chemo sessions. The last PET was done about a week ago and the tumor seemed to have started on the base of the tongue on the right to midline and now its showing on the left. I think it actually confused the radiation Dr. so we are going to the specialist ENT surgeons to follow up for the next step. We were told that the tumor reacts post treatment and every three months we will do PET scans to follow the tumor. Is it to early to tell or should there have been some sugnificant and obvious change to the tumor. Is it possible there is a type O on this right and left issue on a PET scan?