Aggressive Tongue Cancer Surgery

Theresa, wow, you've really been put thru thru thr mill.  i'm so sorry cancer has chosen you all those times.  my cancer was different so i can't offer advice or experience but i wanted to tell you I'm praying for you.    i'm praying it isn't cancer but if it is that God will bless you with the strength to beat it again!  please let us know how the doc visit goes.

God bless you,

dj

Theresa:

I CAN RELATE !!   I am a 3 year tongue cancer survivor and doing pretty darn good.

I had 75% of my oral tongue removed and replaced with a "hunk" of skin, tissue, artery from my forarm, just like they are prescribing for you.

The surgery sounds way more barbaric than it really was.  After surgery, I went through 30 rounds of radiation therapy.  The surgery was difficult but doable.  It was actually easier than the 30 rounds of treatment.  It sounds like you may have been through chemo and/or radiation before.

I also am sending you a private message.

Contact me directly if I can help further...

But you can do this...after all you have been through, you can do this for sure.

Ingrid

cancerx6 said:

Ingrid,
I just responded to

Ingrid,

I just responded to your private message.  Yes, my first tongue cancer in 2008 was treated with chemo and 30 rounds of radiation therapy.  I was told I cold have more chemo but never radiation again in that area.  I don't know what the surgery will be like, but the radiation was a nightmare for me as well!  Thak you so much for the encouragement.  I think you will be hearing a lot from me in the near future.  

Be well,

Theresa

My cancer was of the lower jaw early 2012. Surgery followed by chemo & rads. Returned around carotid artery 15 mos. later. My brother's doctor at Mayo said "don't let them tell her she can't be radiated twice". I had SBRT (a pinpoint radiation) 08/13 and tumor disappeared. Got another on opposite side, chemo and more SBRT 04/2014. Am in the wait and see mode right now. SBRT is not an option for everyone but there is now proton therapy and other things. My advice is that once you get your final dx, do your homework with a 2nd opinion for best options. Hopefully, the surgery will be enough for your situation.

cancerx6 said:

That is great to know!  I

That is great to know!  I like to have as many options open as possible!  I will have my fingers working double time to see what I can find available to me and have been thinking about a second opinion as well.

Thank you so much and I hope your day is happy and pain free!

In January had almost 3/4 of tounge removed and they took muscle from my thigh and replaced it.Called a tounge flap.Just did 30 rounds of radiation and still going though the last of the drugs.I did start to go to a speach specilast whisch she also is helping with the new swollowing.It is going slow but sure.They put in a trach tube and also peg tube which both is helping alot,Hopfully the trach gets pulled in a couple of weeks as it help with both speach and eating.They removed all my teeth during the opration and doctor is sending to a denist that will make up a customised set to help chew and swollow easier.

cancerx6 said:

Thank You

Thank you so much for the information.  These facts are what I need to try to get myself prepared for what is to come.  I had chemo and radiation when I was first diagnosed with tongue cancer in 2008 - not much fun!  I fear so much - especially the thought of a trach tube.  Is it difficult to get used to it?  Is it in your throat or through your nose?  Sorry for the many questions but I am afraid of frightening my 20 month old grandson with things sticking out of me!  I had a peg for 10 months in 2008 so that will probably have to be done again.  I also had all my teeth removed befor my radiation treatments and then had the tongue attached to the floor of my mouth so they said dentures wouldn't be possible.  Maybe now I can have something done!  Sorry for the rambling but I'm waiting for my grandson to arrive.  I babysit today!  He is the light of my life.  I hope to speak with you soon.  Wishing you well and hope they get rid of the trach soon!

I also have my tounge attacted to the floor of mout.Doctor tols me he going to send to a denist that will make me cuctomized upper teeth.Hewill make so the top is alittle to help my tounge get food down.You will surprized what they can do.As far as the trach Not sure if you ever get use to get but you do learn to put up with it.The hardest part for me was learn to learn how to use the suction machine.Then when I did couldn't figure out why I made it so hard on myself.And does help though the healing process.

of SURVIVOR!  God gives his hardest battles to His toughest warriors!  I'm sorry you have had to fight this monster so many times.  Many prayers for a complete healing!!