What to expect squamous cell tongue cancer

Skiffin16 said:

You Mean...

Like this;

If so, I belong to a few forums, fishing mainly (go figure, huh).., also one for Titan Talk... (I have a Nissan Titan PRO-4X), LOL... Anyways, the susel he is on a few of those sites, I just right click copy and paste...

You should be able to do the same with this one   ...

Best ~ John

it wored.   lol

MICH4EL said:

Similar diagnosis

I received a similar diagnosis on March 7,but I don't how similar my situation is to your husband's.  I am one-week post-surgery after having surgery on my tongue and tonsills and having lymph nodes on both sides of the neck removed.

This discussion board is a great place to be. Take the time to search and read the posts to learn what others have experienced and recommend.  Don't hesitate to ask questions. People will reply with both support and good information.

One lesson I learned over the past month is it takes time to come to terms with the diagnosis and to fully understand the treatment options.  Like you and your husband, I was devastated by the diagnosis and thought my life was over.  I, too, heard 50/50 survival but later a different doctor told me 90/10.  I learned that the statistics are misleading because they are based on past treatments and treatment gets better every year and because every person is different and every course of treatment is unique, making it impossible to predict an individual person's survival rate.  It is important to listen to your doctor but also to get a second opinion or even a third opinion (which I did) so that you have the best possible information to decide about treatment. 

Good luck.  Keep us informed. 

M

 

Okay, my BRIEF story.

Stage IV, base of tongue, lymph node issue(size of a hard-boiled egg). I was given three choices.

1. Surgery with no chemo and "minor" radiation.

2. No surgery, chemo, "heavy" radiation.

3. Do nothing.

We chose no surgery, chemo, and heavy rads. I went through 2 chemo treatments and 40 days of rads. Went through all the saliva, sore throat, feeding tube, second degree burns, thrush, not sleeping, lost weight, no taste, severe flu-like symptoms, and everything else related to this Hell. Feeding tube removed 2 weeks after treatment.

5 months later I had surgery to remove 5 lymph nodes in my neck and port removal. Center node was cancerous. Went back to work after Christmas. That was 2006.

6 months after surgery, saliva was 100%. Taste 110%(yes!). Swallowing 100%. Teeth are in better condition than before treatment. NO side effects what-so-ever. Only issues are "turkey neck" and dead nerves where surgery was performed to remove nodes. My rad onc calls me the ssc bot poster child. Of course, I followed my doctors and dentists instructions to the letter, which I understand, a lot of patients do not. I truly believe I had the very best care possible from everyone associated with my treatment. Maybe that is the difference in my story and most others.

I am not recommending any course of action. Just letting you know there are success stories as well.

And by the way, a 50/50 chance of living? My rad onc gave me an 85% chance of full recovery! She said it is one of the easiest cancers to treat and has one of the highest success rates. A lot of you may scoff at her remarks, but in my case she was right on!

All things are possible

Mark S.

Bimmerknut said:

Introducing Myself

I officially became a member of this club two weeks ago when I was diagnosed with Level 1 Squamous. A few notable and relatable things are that I am a 60-year old man. Okay, TOMORROW I will be 60. I am a survivor of non-hodgkins lymphoma as of 2006. I quit smoking in 1991 and to say I drink alcohol lightly is putting it mildly. I rarely drink and when I do it's one or two and almost always to accomodate a meal.

I also have Barrett's Esophagitis and it IS relvant to my story, so that is where I'll begin. I was diagnosed with Barrett's in 1997. The short of it is I lose 80% of the food I eat. When that food comes back up, so do the stomach acids. Those stomach acids have over the years eaten the enamel on my teeth and I've lost a handful. In the past year, I've been working with a very good dentist to perform root canals and use crowns to save the teeth that I can and then go to dentures.

About four months ago, I while we were doing a root canal, I mentioned that my tongue was becoming irritated on the side by a sharp portion of tooth. She ground the sharp edges of a tooth and it was better. Another month later and I was still having problems. We tried to grind again. Suddenly a callous/lesion formed and become very thick and constantly painful. Everything to do with my mouth hurt. Eating, swallowing, chewing, spitting, talking, sucking on a straw and even lying in bed on that same side. This chronic pain had led to sleep deprivation and utter fatigue and exhaustion. I'm disabled through a back injury but I'm in my senior year at my local university and it has greatly affected my ability to study, read and take part in oral presentations.

My dentist finally referred me to an ENT doctor who took a biopsy and the result has landed me in your club of people sharing what thier experiences are. Treatment is set for surgery on June 6th. He is going to remove a football-shaped portion of my tongue and have it set to the lab while I'm still sedated to make sure he gets it all. I'm okay with all of this! But, the pain has also been deep down near my jaw-bone and I have very mild but frequent ear-aches. I'm fearing that it has gone into my lynph nodes. I'm also fearing that the spot on my jaw, below my tongue cannot be exised and that would mean chemo and radiation. My oyhrt bout with cancer was in my ukpper groin. Getting chemo and radiation in the head and neck area frankly leaves me unneasy.

I'm still sleep-deprived every night. It's wearing me down. I'm a HUGELY optimistic person and I know that God HAS me in this! My faith is immense! Even that being said, there is a certain amount of depression that has crept in slowly. I know that it is not clinical depression, but depression nonetheless from sheer exhaustion.

Normally, most people would apologize for being long-winded, but I am a creative writing major and I take certain prides in that. So without boring you all further, I'd be very pleased to hear your comments and associations. Also, is there anything that any of you do at home that has helped the discomfort? Heat packs? Cold packs? Salt-water rinses? I'm pretty stuck to soft foods as chewing is now a chore due to the pain and the lack of most of my teeth which are used for mastication.

Thanks all for plundering through my post. I pray you all recieve the Grace of swift and complete healing!

~Bim

 

Bim,

Welcome to the H&N forum, you certainly sound qualified to be here and I am sorry about that.

To get maximum traction on your post you may want to start a new thread, these older threads tend to get past over.

I too had tongue cancer and required some surgery to remove the invader.  I healed up fine with no major issues to date.

The treatment for our type of cancer can be rough, but until you get into it and observe how your body will react it is anybody’s guess on the level of side effects.

I used magic mouth wash for most mouth discomfort and had a ready mix of salt and soda for swishing often.  Sleep has rarely been a problem for me, but the few times my brain was racing I took one Lorazapam to calm me down.

You may want to visit the Superthread for information, it is loaded.  It sounds like your team has a plan so now it is time to fight.  You can do this and come out the other side a happier healthier person.

Feel free to write as much as you want and ask questions.

Matt

Bimmerknut said:

Introducing Myself

I officially became a member of this club two weeks ago when I was diagnosed with Level 1 Squamous. A few notable and relatable things are that I am a 60-year old man. Okay, TOMORROW I will be 60. I am a survivor of non-hodgkins lymphoma as of 2006. I quit smoking in 1991 and to say I drink alcohol lightly is putting it mildly. I rarely drink and when I do it's one or two and almost always to accomodate a meal.

I also have Barrett's Esophagitis and it IS relvant to my story, so that is where I'll begin. I was diagnosed with Barrett's in 1997. The short of it is I lose 80% of the food I eat. When that food comes back up, so do the stomach acids. Those stomach acids have over the years eaten the enamel on my teeth and I've lost a handful. In the past year, I've been working with a very good dentist to perform root canals and use crowns to save the teeth that I can and then go to dentures.

About four months ago, I while we were doing a root canal, I mentioned that my tongue was becoming irritated on the side by a sharp portion of tooth. She ground the sharp edges of a tooth and it was better. Another month later and I was still having problems. We tried to grind again. Suddenly a callous/lesion formed and become very thick and constantly painful. Everything to do with my mouth hurt. Eating, swallowing, chewing, spitting, talking, sucking on a straw and even lying in bed on that same side. This chronic pain had led to sleep deprivation and utter fatigue and exhaustion. I'm disabled through a back injury but I'm in my senior year at my local university and it has greatly affected my ability to study, read and take part in oral presentations.

My dentist finally referred me to an ENT doctor who took a biopsy and the result has landed me in your club of people sharing what thier experiences are. Treatment is set for surgery on June 6th. He is going to remove a football-shaped portion of my tongue and have it set to the lab while I'm still sedated to make sure he gets it all. I'm okay with all of this! But, the pain has also been deep down near my jaw-bone and I have very mild but frequent ear-aches. I'm fearing that it has gone into my lynph nodes. I'm also fearing that the spot on my jaw, below my tongue cannot be exised and that would mean chemo and radiation. My oyhrt bout with cancer was in my ukpper groin. Getting chemo and radiation in the head and neck area frankly leaves me unneasy.

I'm still sleep-deprived every night. It's wearing me down. I'm a HUGELY optimistic person and I know that God HAS me in this! My faith is immense! Even that being said, there is a certain amount of depression that has crept in slowly. I know that it is not clinical depression, but depression nonetheless from sheer exhaustion.

Normally, most people would apologize for being long-winded, but I am a creative writing major and I take certain prides in that. So without boring you all further, I'd be very pleased to hear your comments and associations. Also, is there anything that any of you do at home that has helped the discomfort? Heat packs? Cold packs? Salt-water rinses? I'm pretty stuck to soft foods as chewing is now a chore due to the pain and the lack of most of my teeth which are used for mastication.

Thanks all for plundering through my post. I pray you all recieve the Grace of swift and complete healing!

~Bim

 

I'm going to make you a thread all your own, so more people will see it and respond.  It will be located on the main page.  All of these old threads get skipped over.

p

saranaz said:

Need some advice

HI everyone:

I didn't know how to start a new thread so sorry for writing this here. So my mom lives in Iran, we have pretty good doctors there, but SCC is a strange  cancer since it is not talked about that much. She was diagnosed last summer with T2 SCC she had surgery and Radiation (33 sessions) but in December she had to have another surgery and the doctor said he got 90% of the tumor but a small scar is left at the back of her tongue. Her new doctor, a more experienced one, has now recommended Chemo (8 sessions) her bip[sies came back as a T4 but no lymph nodes or other parts are affected. She has a feeding tube and has another 4 sessions of chemo. She feels really crappy (sorry lack of a better word) and I am away from her, I am doing a Ph.D. in the States. I a just looking for some insight from those who have experienced this and experienced some set -back (needing surgery again and further treatment. I am very worried and scared.

It’s easy to post a new topic and start a new thread.  Just hit Post new Form topic as it is showing above (on the opening page), and there you go.

Matt

CivilMatt said:

my advice above

It’s easy to post a new topic and start a new thread.  Just hit Post new Form topic as it is showing above (on the opening page), and there you go.

 

Matt

THANKS 

Hello folks.  I was diagnosed Dec. 2017 with Stage 4 SSC of the base of the tongue.  The tumor was a little larger than the size of a golf ball with one lympth node involved.  I underwent 35 Radiation Therapy Treatments and 7 Chemo-Therapy Treatments with Cysplatin.  I did not have surgery as the tumor was in an area the made surgery difficult.  I am now on my 11th week out of treatment and am trying to beat this tough cancer.  On week 8 after treatment, I was able to start eating some soft foods, scrambled eggs, etc.  I find eating causes me the most stress.  I found that as soon as you are able to start eating some solid foods, that it is a good idea to continue the liquids, as I did high protien milk shakes in congontion with the food.  I found trying to go straight to the solid, soft foods and doing just those without supplimenting with liquids diet sometimes, caused too much throat pain.  What I mean is this:  I would eat one meal with solid, soft foods, then the next meal was a protien shake, instead of two back to back solid, soft foods, this caused too much pain to my throat.  This is what worked for me, each individual is different, do what works for you.  I realy thought that now after 11 weeks out of treatment, I would be doing better than I am.  You can not rush this, it's one day at a time.  I lost 54 lbs during my treatment, and I'm trying to gain some weight back, it's hard, as eating is difficult.  Anyone have any good reciept ideas, plaese share.  I am schedualed for my follow up Pet Scan in 3 weeks, and if any activity is seen, I'm told I'll have surgery.  I keep fighting and trying and pray that God is using this to bring me to a better place.  It's not easy, but it's doable.  Thank you for your encouragment.