I found this forum through a Google search. I am a 56 yo male and last week I was diagnosed with invasive Squamous cell carcinoma after a biopsy of my tongue. I should also let you know that I am a survivor of Triple bypass and have and ICD implant.
Needless to say, I am scared about the future. I have always made my living using my voice as a primary tool. The prospect of losing half of my tongue has me petrified with fear and very concerned for the future.
I know that my ENT wants to move forward with the surgery as soon as possible and I know that is the right thing to do. He also wants to have the surgery done in a University setting which means leaving home to have the procedure done.
He is also stating that we will have 8 weeks of radiation after the surgery.
HELP - - what do I need to know as I move forward. What can I do to assist my wife in going through this process with me? We are both strong Christians and know that this is "Treatable and Beatable" but I'm still scared.

thanks for your input

Hi there, I am new here too - i am helping my dad - I can't give you as much advice as others who are going through the process but just wanted to say that you are not alone - listen to your doctor, listen to your body, build a support team and be proactive

Hi guys! Welcome to the club no one wants to qualified to join.

I know you're both really scared--I'd worry more about someone who WASN'T. My fear was more that I would have a coronary and die on the table than that the cancer would take me. (So far, neither has happened.)

Wingman: I had a hemiglossectomy and free flap resection three and a half years ago, and for what it's worth, people tell me I sound exactly as I did before. People I've met since Flappy (the name I gave my flap--clever, huh?) say that they can't tell I had anything done. It has had no effect on the quality, pitch, timbre or anything else having to do with my voice. Is your doctor planning to do a flap? Both my docs and I have been phenomenally pleased with the way mine has worked out (built "to the roof" on the left side of my tongue, from tip to base, from a piece of my right forearm). I was even more fortunate not to need radiation, chemo or even speech therapy. Unfortunately, eating has not proven to be a problem either. My work was done at a teaching hospital (U of M) and that more than anything is probably why things have turned out so well.

I hope everything turns out ok for you.

Julia

Thanks Julia for the encouragement -- no mention has been made of a flap but I suppose that discussion will be forthcoming. How long was your recovery? When were you able to go back to work? I am familiar with U of M and their reputation. I have been told that my surgery will take place at either Shands in Gainesville or at the USF hospital in Tampa. As it was explained to me having the surgery at the university setting allows a closer monitoring of my heart and immediate intervention if needed. It's all so overwhelming to me and my poor wife is having a great deal of difficulty bearing up.

Julia sure had some good news on her procedures and hopefully, you will fare as well.

go to the topic topic "survivor stories" on the message board and you can read what many of us have documented on our slow journey to recovery.

good luck and let us know how you are doing from time to time.

later, pete

Hi again Wingman

Recovery is pretty much an on-going thing. I'll consider myself fully recovered when my scars (two on the neck from dissection and trach, one on my right forearm from Flappy's cesarian birth) all fade. I'd say it took my tongue about a month to heal to the point where I was ready to start talking again (buy LOTS of legal pads and a good clipboard). My beloved doctor has even offered to pierce it so I could have something to hold onto when doing stretching exercises.

Under normal circumstances, I would have been back at work about a month post-op. Unfortunately, I lost my apartment about that same time and ended up staying with my parents in a pretty job-starved part of Michigan until I landed my current job and moved into my present apartment. I know that this doesn't answer your question, but it's the only answer I have.

Is there a cancer support group in your church? This is really not a time to be alone. Keep your family informed. My family are all spread out (parents and brother in Michigan, sister and her family in Virginia), and it was increasingly difficult for me to talk, so I relied heavily on e-mail to keep them all in the loop.

Above all, get as much rest as you can. This applies to both you and your good lady wife.

Julia

hi wingman
welcome to the site and glad you found us we are a supportive bunch on here.of course you are scared we all were.its the fear of the unknown.i used to cry to my husband at night in bed i did not know what to expect.i was always careful what i said in front of the kids.but once you start your treatments you will find that you just go with the flow.good luck and keep us informed of your progress.love shirl xxx

Hi Wingman,
You have already been through a lot and have taken it all in your stride.I see no reason to panic now as the doctors know their job and you will be fine. A bit sore here and there but will certainly not be welcomed by God or the Devil ( my pet lines). You are destined to remain here besides your wife and family - so just accept whatever is thrown or dished out to you. The satisfaction of coming through is overwhelming and I am more then sure you have in you to do so. Your wife too is a strong lady to have stood by you when you underwent all the other problems and am sure she too will be like a rock by your side through this also.One last thing before I end my sermon - as you mentioned you are both strong Christians and hence believe in the spirit of Jesus. I am sure Jesus will not allow anything to happen to you - as your belief in him is strong. Just remember - whatever that happens - only happens for the best - only one may not realise it at this moment.
Think over what I have said as I am a person with no religion and only believe there is an almighty but I do not give the almighty a name or a figure. However, in no way do I refuse to accept any religion that each believes in as that gives you strength and something dear to hold onto.
So stand strong and you will come out with flying colors.
Take care my friend.
hugs,
Ananth

Hiya Wingman

My mother, aged 76 at the time, had the procedure which you are facing. Half her tongue was removed and replaced with a muscle taken from her tummy. She also had radiation - which she thought was worse than the surgery

I can't pretend that any of it has been easy, but that was 15 months ago and she is now back to eating (albeit slightly restricted), dancing twice a week, shopping, cooking, washing etc. etc. and we all went to Greek islands earier this year for a weeks holiday, which she coped with.

I am a great believer in arming yourself with as much information as you can. Some of it will frighten you, but lots will help you through this terrible time. ...... oh and this crowd here do a great job too.

Hiya Wingman, apologies but I been out of action for a little while, today I am back hone catching up and I read with interest your postings.

If I may add that I am infront of you by a little way, I was diagnosed same as you early this year. Today I have finished all my treatments and am on a path of recovery.

The operation (6 April 2008)to remove infected areas and reconstruct my tongue (75%) went well, my main hold up were an infection making a longer stay in hospital of 17DAYS.

I recovered well, and was able to eat at my cousins wedding, drink, and talk a lot easier than either myself or any others who know me would believe.

I started Chemo and Radio end May for 6 weeks. Now I recovering as I have gone back a lot. This has been the really tough part for me.

Today I am alive, my friends tell me how well I look, am feeling very positive, and although unable to eat anything yet due to the soreness of my mouth and throat, I can speak and swallow quite well. I endevour to contribute my progress to the site as apropriate.

Since learning of my predicamant, I have always tried to deal with it. My consultant spoke with my doctor to say Nigel doesn't seem to grasp he has a rough ride ahead.

This site, and the contribution of others has helped me greatly, both in a sharing sense and emotional sense. The team of medical staff have excelled. My friends are treating in a sort of herioc sense after all this.

The most important fact is you will have good days and not so good days when recovering. The simple answer being its a slow recovery back to normality, something I have misjudged, being too over confident.

Your case is so similar to mine, I just like to reinforce others' comments here, please write to the site or myself if you think I/we can be of any help in any matter at all mate.

Sure you'll be fine, stay strong and keep your pecker up.

Nigel.

More detail on procedures are viewed under my postings.

Wingman, I'm looking at my third surgery next month on the 14th... will be getting the flap and since knowing this have found many people that know people with this lovely addition and all is OK.

I'm 51 yrs old with no other health issues (except the cancer thing) I'm right down the road from you in Brandon/Tampa area. The first two surgeries left me with enough tongue to sing in my church (without them throwing me out) :-)

A little lisp and when I'm tired an occasional slur. I'm also a Christian and find it's a great opportunity to share the depth of faith one has in the Lord. All of those Sunday School lessons you've either taught or listened to now have the opportunity to become alive in your life. Instead of an intellectual understanding of scripture, it's the opportunity to make it an emotional/living reality. 'Cast all your cares upon the Lord, and he will sustain you'. Means much more to me today than before this experience.

There are definitely concerns on making a living if you're in sales, or deal with the public as they look at you as if you've been drinking sometimes. I simply say...."just had surgery" and they accept that and we move on with business.

I was also concerned about my "image". Now I'll be the "cancer guy". But I've heard it said in this forum that the guys/people that knew you before already love you, and ones you see on the street you'll probably never see againn....so who cares. (That's Ananth I think)

Anyway, enough from me...God and one man is a majority... you have nothing to be afraid of.

take care,

bob (pembo)

Hi Wingman and welcome,

I can't advise you as I my cancer was in my tonsil - but just want to wish you all the best for the next few months which will be hard but worth it. Through my rt, in my darkest times, felt the Lord was carrying me through it and was there with me.

Love Chloex

Hiya Wingman! Just a quick note from another neighbor.... we are in Spring Hill....my hubby was diagnosed with SCC in November and completed chemo/radiation in February. Marty too was concerned about his voice as a musician and fortunately did not undergo surgery. He was treated at the VA Hospital in Tampa and had, as part of his team, Moffitt and USF physicians. We too are Christians and our faith has certainly been tested and remains strong throughout. I was happy to hear of your concern for your wife as well as this event most assuredly affects us caregivers. Please feel free to PM me. I would be more than happy to chat with you and/or your wife as your treatment progresses... God Bless... good luck with your therapy and subsequent healing.
Nancy

Dear Bob (pembo),
This is my first actual communication with you, though I have been following your posts with a lot of interest.You are a source of inspiration to all in the forum and doing a fantastic job.
Even though you have been so much and yet have a great sense of humor and a will to urge others speaks about your personality. I truly hope you will continue to do the same for a long time even after you are rid of the damn cancer.
I do not know if you have read my story - on the main page - look at the right hand side and under survivors - click on Ananth's story and do go through the story. I am sure you will find it interesting.

With lots of warm regards and hugs (I have plenty of them and distribute them to all my friends here on rdoc).
Ananth

I want to say this in encouragement for you. I was diagnosed with tonsil cancer in Oct 07. I've been through the year from hell with radiation theropy and chemotheropy. But I am feeling a lot better now. In some ways, almost normal. I had a cat scan done recently and guess what? No cancer. I know it's early but it gives me a lot of hope.