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4th Recurrence

Rick2924's picture
Rick2924
Posts: 22
Joined: Jan 2010

Well, I don't seem to be able to beat this thing. I was just diagnosed with another tumor on my base of tongue. This is my 4th reucrrence since my original diagnosis 5 years ago. Because I've had prior tongue base resections, the only surgical option at this point is a total glossectomy with a free flap from my rectis abdominis muscle. Because of my prior surgeries, I would have almost no tongue base left to help with movement of the flap.

I'm wondering what others in the group who have undergone a total glossectomy have to say about recovery from such an operation as well as the potential for speech afterwards.

Because of my history of , all my docs feel I would still have a very high likelihood of another recurrence after this surgery so I also have to consider just slowing things down with chemo and letting nature take it course. I just don't know which way is going to tougher on me and more importantly, my family.

Thanks for any input.

Rick

 

 

 

 

 

phrannie51's picture
phrannie51
Posts: 3690
Joined: Mar 2012

I don't have advice, as I didn't have BOT surgery (or any surgery for that matter)....but I am sitting here in awe at your toughness and your resiliance.  I'm wishing you the best in whatever decision you lean towards. 

I'm sure someone on here has had a total glossectomy, and will have some words of wisdom.

p

debbiejeanne's picture
debbiejeanne
Posts: 2393
Joined: Jan 2010

rick, i just want to say i'm very sorry for the battle you find yourself n again.  i'm also sorry for the situation u've been faced with and the very hard decision you must make.  i will be praying for God to bless you with strength and courage to get thru this.  good luck w/whichever decision you make.

keeping you in my prayers,

dj

Crazymom's picture
Crazymom
Posts: 295
Joined: Nov 2011

Tough decision.  sending prayers your way....Ann

 

longtermsurvivor's picture
longtermsurvivor
Posts: 1792
Joined: Mar 2010

I can sure understand your reluctance to submit to yet another surgery.  This type of surgery is pretty extreme, if your situation is one where recurrance after it is a high order risk.   What is your radiation history?

 

best to you

 

Pat

 

hwt's picture
hwt
Posts: 1906
Joined: Jun 2012

So sorry to learn of your dx. I'm on my 1st recurrance but my cancer was in jaw and now in carotid cavity. No one would tackle it surgically because of the tight location to so many important things. I found hope at Mayo and had SBRT tx a week ago. No results for 3 months. I can't imagine your situation for a fourth time. Remember that you are your own best advocate. Keep researching. Hopefully, someone on this site can offer options that they had. Maybe inquire at MDAnderson.

 

God bless 

KTeacher
Posts: 928
Joined: Jan 2011

It is not a competition, but I am on number 4 also.  I am having Cyberknife this Wednesday and Thursday and possibly Friday.  I don't know about the surgery that you are facing.  Second opinions are always a good option.

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

 

with HWT and KTeacher , If you can get to MD Anderson or another large Cancer Center  get a second opinion. My best to you whichever way you choose to go.

 

peggy

josh r.
Posts: 188
Joined: Oct 2010

Hi Rick,

You have beat it THREE times and we're all pulling for victory number four. I don't have experience with what you're fighting but you have all my prayers with you. God Bless, josh r.

Skiffin16's picture
Skiffin16
Posts: 8072
Joined: Sep 2009

Thoughts and prayers to beat this for good...

John

Viilik70's picture
Viilik70
Posts: 57
Joined: May 2012

I feel for you because you are such a trooper and been through so much that I can't imagine! I'm notrying to tell you what to do, but get right with God and I truly think you will be lead to the right decision and He will take care of you and your family. he knew you since before you were born and he has numbered the hairs on your head. God will take care of you!

sin9775's picture
sin9775
Posts: 198
Joined: May 2013

I can not fathom what you and your dear family are going through now.  I am sorry I don't have any advice for you, but please know that I will say a special prayer for healing for you and for you to receive the strength it is going to take to deal with whatever lies ahead for you on this tough journey you are on.  God bless you, Rick.

~Shawn~

hwt's picture
hwt
Posts: 1906
Joined: Jun 2012

Sept. 10th post by JackFlash might have some helpful info for you. Worth looking into.

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Rick,

Definitely impressed with your perserverance and positive attititude.  Good luck with whatever you do! 

Best to you!

Greg

ps- sorry no advice - tonsil guy here vs tongue

jackflash22's picture
jackflash22
Posts: 242
Joined: Aug 2013

I can't advice you what you should or shouldn't do. We all have decisions to make in life...if it were me I'd take life and fight again for it.  Many people have to have the tongue removed first time and I've read postings from those that have and they get along just fine. Is there a way to have a voice box fitted or a mechanical speaking aid. My room mate in hospital had her voice box removed and was told they will get her speaking again. Another article I read is a tongue can be made out of tissues from the body, dont know much about it but was in awe at what they can do these days. Your family will be right behind you I'm sure, whatever you decide, can you take it, have you any fight left, don't give up till "the fat lady sings" as the saying goes. Good luck on you decision....Prayers will be said for you..

Hondo's picture
Hondo
Posts: 5742
Joined: Apr 2009

Wow I can feel your pain as being one who is always told bad news myself. If your body is still in good shape and you can still enjoy life do what you need to do to get rid of it, if #5 comes deal with it the same way. My NPC came back 3 times and I still fight it every day of my life because it is there but for some reason just stopped growing a few years ago. I live on a PEG tube but still work full time and enjoy being a part of my grandchildren’s life. It is what it is and by no means give-up..

 

I do a lot of praying and will keep you in my prayers

Hondo

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