Dad biopsies in August good, biopsies taken last tuesday bad.. confused, angry.. pls help

nicki74

hi my father was diagnosed in february with stage 4 tongue cancer, which we were told was agressive.. we opted for option b which was radition and chemo, 2 rounds of induction chemo..finished treatments in june, biopsies in august clean! instead of the surgery which we were told he would lose all of his tongue, jaw and voicebox.. now it looks like we are back to square 1.. the ENT said today that he would need the surgery, and he would lose at least a third of his tongue (better than the whole thing, right), and they wont know about the voicebox until they actually go in there, but his voicebox has always looked good according to ENT.. has anyone had this surgery, and how are you recovering.. ENT also said the intial decision on whether or not to have surgery is up to my dad..

any thoughts and opinions are greatly appreciated.. i cannot believe how quickly this demon returned.. thanks again!

nicki

Hondo

Hi nick

Sorry to hear about Dads C coming back again it is an issue we all live with everyday. I would like to suggest getting a second opinion before I would do anything and make sure it is from one of the premier Cancer Centers here in the US like the Mayo Clinic or MD Anderson something like that. I wish I would have gotten a second opinion before I did my second treatment it would have saved me a lot of pain.

Take care

MarineE5

Sounds similiar
Nicki,

I am sorry to hear that your Dad has to go through all this again. I may be able to answer some of your questions as I had over 1/3 of my tongue removed. Like your Dad, I was given several options when I met with my Surgeon. The 1st option was to receive Radiation and possible Chemo. The 2nd option was to have the tumor on my tongue removed by a laposcopic operation and then Radiation and again, possible Chemo. 3rd option was a Neck disection and the removal of part of my tongue. The amount of my tongue was not told to me. I chose option 2 to start with.

Option 2 didn't work as the Surgeon was not able to move around in my mouth with the instruments and had a Peg Tube put in while I was knocked out. I was going to need this anyway. After speaking with the Surgeon once again, I chose option 3 as I wanted the tumor out of me. I was told that I had a chance of being on the Peg Tube for the rest of my life and having trouble with speaking. End result was a Radical Neck Disection, a Trach, Peg Tube and the removal of part of my tongue. The trach stayed in until all the swelling went down in my neck and throat area and once it was out, I was able to start eating soft foods and increase as time went on. I had the Peg Tube as a safety net for my nutrition.

I have been blessed as my Surgeon is very good and is at a Teaching Hospital/University. I don't have the Peg Tube, but do have some problems eating certain foods. My speech is pretty good, but again, some words give me trouble.

I am 6 years out from my Surgery. I hope this is of some help to you and has answered some of your questions.

My Best to You, Your Dad, and Everyone Here

Pam M

Round Two
Nicki,
sorry your dad's back in the fight. Several people here have had surgery similar to what you're describing; hopefully some of them will see your post soon. It does sound like, thanks to chemo and radiation, your dad will be having a much less invasive surgery than the one he would have had if he'd gone under the knife at the start. Hope all goes well.

nicki74

MarineE5 said:

Sounds similiar
Nicki,

I am sorry to hear that your Dad has to go through all this again. I may be able to answer some of your questions as I had over 1/3 of my tongue removed. Like your Dad, I was given several options when I met with my Surgeon. The 1st option was to receive Radiation and possible Chemo. The 2nd option was to have the tumor on my tongue removed by a laposcopic operation and then Radiation and again, possible Chemo. 3rd option was a Neck disection and the removal of part of my tongue. The amount of my tongue was not told to me. I chose option 2 to start with.

Option 2 didn't work as the Surgeon was not able to move around in my mouth with the instruments and had a Peg Tube put in while I was knocked out. I was going to need this anyway. After speaking with the Surgeon once again, I chose option 3 as I wanted the tumor out of me. I was told that I had a chance of being on the Peg Tube for the rest of my life and having trouble with speaking. End result was a Radical Neck Disection, a Trach, Peg Tube and the removal of part of my tongue. The trach stayed in until all the swelling went down in my neck and throat area and once it was out, I was able to start eating soft foods and increase as time went on. I had the Peg Tube as a safety net for my nutrition.

I have been blessed as my Surgeon is very good and is at a Teaching Hospital/University. I don't have the Peg Tube, but do have some problems eating certain foods. My speech is pretty good, but again, some words give me trouble.

I am 6 years out from my Surgery. I hope this is of some help to you and has answered some of your questions.

My Best to You, Your Dad, and Everyone Here

thank you all for your responses
right now dad does have the trach and the feeding tube.. i spoke with the ENT today and he said that he would not know if he would have to remove the voiceb ox until he saw closely the base of the tongue.. all and all he said, jaw, portion of tongue, lymphnodes and possibly voicebox.. how does one live.. he is asking me how he will look? what do i say...i do not know.. i feel helpless...

MJ70

nicki74 said:

thank you all for your responses
right now dad does have the trach and the feeding tube.. i spoke with the ENT today and he said that he would not know if he would have to remove the voiceb ox until he saw closely the base of the tongue.. all and all he said, jaw, portion of tongue, lymphnodes and possibly voicebox.. how does one live.. he is asking me how he will look? what do i say...i do not know.. i feel helpless...

Nicki....Your Dads Surgery
Nicki: I can tell you only about your Dads surgery to replace his jaw...I had my lower left jaw bone replaced almost two years ago and they used the fibula from my right leg..They can use other bones ..ie arm or back...It was pretty painless and the six days in the hospital flew by...The surgery was start to finish about 12 hours which would probably be at least your dads time frame..maybe more..I feel i look the same... there might be a few more wrinkles on the left side of my face but things are good...Unless it is a very radical surgery he should look just fine...good Luck to you and your Dad.. MJ

Pumakitty

nicki74 said:

thank you all for your responses
right now dad does have the trach and the feeding tube.. i spoke with the ENT today and he said that he would not know if he would have to remove the voiceb ox until he saw closely the base of the tongue.. all and all he said, jaw, portion of tongue, lymphnodes and possibly voicebox.. how does one live.. he is asking me how he will look? what do i say...i do not know.. i feel helpless...

I am so sorry
Nicki,

I have been thinkig of you. I am so sorry to hear the news. I agree that you should get a second opinion. I wish I could give you some more information. Please feel free to PM me any time you want to talk. Please know I am praying for you and your family.

Kathy

nicki74

thank you all
hello again, thank you again for responses! i am pretty confident with the doctors that we have been dealing with out of Rush in Chicago.. great team of doctors.. i would really hate to switch, as far a a 2nd opinion.. plus they want him in asap for surgery because of how agressive this is.. i could not imagine as an individual the daily worries a cancer survivor or one fighting this battle goes through.. i try to stay strong for him and my mom, his caregiver.. ENT said that there are some people who not even a canditate for the surgery, so at least he has an option.. everything the doctors have told us from day one has been pretty right on..i continue to pray not only for my dad, but for you survivors who have the worries of this demon returning into your life after you have endured a great deal of treatment and/or surgery... thank you all for your responses.. hope everyone has a great thanksgiving and i will keep you posted..

nicki