Just diagnosed with squamous cell carcinoma of the tongue 1/27/15

Hondo said:

Hi Joy

 

Welcome to the family here on CSN H&N, as you can see you are not alone and you already have many friends here that can give you help and support. We were all like you at one time so it is normal to feel the way you’re feeling. Just hand in there C happens to people every day, the good news is that you can beat it.

 

Tim Hondo

As others have said you have come to the right place.  I remember when I was dx back in March of 2012 I found this post and asked "Is this fight worth it" bam I received over 30 responses from these folks and I knew then that I was not alone and for the next year I and my wife made it thru a very tough period with the help and support we received here..  P51 referenced the Bus, that was kind of our transportation thru cancer slogan, get on the Bus and it will carry you until you can get off and help the next busmate take your seat.  Well many of us have gotten off the bus and are living proof that this can be survived.  I had Stage IV BOT and did Chemo and Radiation both, easy heck no, but thru the Grace of God and the folks on this site, my wife and family it gets done.  So get on the Bus find a comfortable seat, hold all the hundreds of hands that are here for you and buckle up.  Then the day will come you can let someone who will need your advice and wisdom to take your seat as you watch your baby growup.  Doug

As always, sorry the club has a new member, but welcome. Sounds about like what I had which was tongue cancer. Mine was about mid-tongue on the right lower side. I was told it was at an early stage and my chances for long-term survival were excellent. I believed them, and at this point I’m a little less than 3 years since my diagnosis and going strong with no signs of cancer.

The surgeon told me he would do a hemiglossectomy which is removal about half the tongue on one side. He simultaneously did a reconstruction in which the tongue was repaired to look fairly normal. At the same time, I had a neck dissection on one side where about 40 or so lymph nodes were removed. Interestingly, my bigger fear was not how long I would live, but how well I’d be able to tolerate the surgery and speak and eat with half of my tongue removed.

The surgery worked out very well. The pain was less than I expected. If I recall correctly, I was in the hospital for 3 days. I was back to work in a bit over a week. I was back to eating solid foods with almost no difficulty within about 4 weeks, and my speech was about normal within several weeks. Unfortunately, one of the lymph nodes tested positive so I had to go through 30 radiation treatments and some chemo. The radiation was much worse than the surgery, and most of the side effects I have today are related to the radiation, not the surgery, so hope that all you need is surgery, and cross that bridge if and when you get to it.

I honestly don’t know too much beyond my own treatment, but I trusted the doctors (Sloan Kettering, NY) and followed their instructions. I never heard of lymph nodes being important, but the short answer I got from the surgeon was that I even after the removal, I still had more than enough.

You may be worried about the cosmetics and aesthetics of the procedure. The cut in my neck for the lymph node removal was in a crease of skin, and you really can’t notice it unless you’re looking for it. My tongue looks completely normal, except it’s a bit short (can’t lick my lips). My speech is basically unchanged.

I made a couple of slide shows to share with my friends at 6 days post surgery https://www.youtube.com/watch?v=5-PVrJCK01s  and again at about 5 weeks post surgery https://www.youtube.com/watch?v=UYAQrAbAhUw . Feel free to ignore the content, as my sense of humor has always been a bit off center, but you will be able to see the improvement in my speech and in the scar in the few weeks. 

Best of luck to you. There is no reason at this point why you should not believe you’ll be around for many years living life just as you always have.  

Joy, 

welcome. Sorry you have to be here.  I hope you feel encouraged by all the messages! tomorrow my husband has his last rad! we only have 3 cyber knife sessions after that and we are done with the treatment. Dima got diagnosed the second week of September. He started chemo on the 16th. I remember because it was on my birthday. What a birthday that was. Chemo was hard and so was radiation. Actually, to be very honest, they were more than hard. But looking back I feel that the week we got the diagnosis was the worse. We got the biopsy results on a Friday. by Sunday he was admitted. We left the hospital on Thursday with the diagnosis, the port and the g-tube placed. for us the worst part was the waiting to hear the results, for the docs to explain what was going on, to start the treatment. after that, Time went fast. 

one of the things that helped the most was a post from Jeff. He wrote saying to tell Dima "if Jeff can do it, so can you"  it became something we would say since he thought it was funny since he had no clue who Jeff was.  Little things like this help so much  

i hope you find here as much encouragement as I did!  sending you blessings.