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

ditto1

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

Welcome Joy

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

gdawg55

Hi, Joy.
I just had a

Hi, Joy.

I just had a tonsillectomy and neck dissection a month ago.  I had tonsil cancer diagnosed last Oct.  The doctor got good margins around my tonsil and no lymph node involvement in the neck.  As of now, I have no other treatment to go through and I feel fortunate and blessed.  You can get through this.  The operation part is scarry, but you will recover in a few weeks.  There will be some discomfort, but nothing you can't handle.  My throat is now 90% back to normal and my neck is a bit stiff from the dissection (and I have a rather large scare), but I feel great.

I wish you and your family the best of luck.  Stay positive and find a good, reputable cancer center.  I know it's all confusing, frustrating, and scary, but you have a huge support system here and I know your family will take good care of you.

 

God Bless,

Greg

Bart T

YOU'LL BE FINE

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.  

Mikemetz

phrannie51 said:

Welcome to the club

nobody wants to join, Joy.  There is not a person here who wasn't scared silly when they first got here....not a single one!  Everything was normal just a week ago, then boom!  we find ourselves caught in the center of a word we never expected to hear....CANCER!!  I remember well.....but like you, I found this group before I started treatment....I asked hundreds of questions....I let everyone know how I was feeling.....and I found not only great information here, but so much support and kindness.  Also, the people here are so smart....they know things even the Drs. don't know on how to make this journey even more doable than it already is.  You're going to be alright. I might add....the first thing I did was drop Google searches, as per the advice I got from here....and right away my life became easier. 

There is SO MUCH HOPE!!  You're young, you're Stage II, you have much to live for.....that's just the bottom line of hope, with much more hope to add on to it.  Treatment isn't a walk in the park....but you will see as others pop in and talk, that there are many, MANY here who have been around for a long time after getting this disease and gettign through it.  My Dr. told me up front that I'd get over this.....that something else will cause my demise somewhere down the road.....but it won't be this.  I had Stage III, Nasopharyngeal Carcinoma (NPC in the venacular).  No surgery, but I was told if my lymph nodes didn't go down during rads and chemo I'd get surgery when treatment was over.  I am now 2 1/2 years out of treatment....three years next month I got the diagnosis.   

Pre surgery, eat all you can of whatever you want.....extra weight has now become your friend...the more fattening the better....how fun .  Once treatment starts rules are drink, drink, drink....eat, eat, eat.....rest rest rest.  You're going to make it through this, and out the other side.....you will live to see your baby grow up!!  All done with a "one day at a time" attitude....you can do this!!

There is at least one other person on here who went to Shands in Gainsville.....Krashpad....he doesn't post here often, but I see him a lot on Facebook.  I can introduce you if you want.

If you stick close to the group, tho.....I can attest that you have found the best Head and Neck Cancer group on the internet....there are so many smart, smart people here.

p

Is that really you?

I don't have anything to add to all the good advice you've been given so far.  As always, the folks on this site are fast and generous with information and support.  Be sure to come back here soon and often.

P--I had to do a double-take on your new photo.  I recall your first one, with "so much freaking hair" and then your next 'do after that.  

mike

 

avisemi

Joy, 
welcome. Sorry you 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.  

PJ47

It is a scary time

but I am certain you will be fine after all.  Be sure and go to a large teaching hospital that deals with this type of cancer near you. Pick a team and doctors you have faith in and who treat you like a human being.  Mayo clinic is good as are others in Florida if that is where you are.  It is definitely treatable and curable.  I suppose they are talking about removing some lymph nodes to make sure the cancer has not spread and that is a good precaution but they do not need to take out tons to find that out.  I had 22 removed in levels 2,3and 4 and since none of the samples had anymore cancer in them (except the one in level 2 that we knew existed) then they did not need to remove anymore.  It is called a modified lymph node dissection.  You will heal from it but it does take time and exercise.  The tongue surgery will be tough but you will also heal from that as well and I hope and pray you will not need radiation or chemo but if you do you will also get through that and heal.  The body is amazingly resilient.  Live a healthy lifestyle to help your body and take each day as a blessing.  This is a path that no one wants to walk on but you will find a beautiful, lush, clearing  at the end. Surround yourself with those who love and support you in this walk.   Peace to you during this time,

PJ