Hi, I was just diagnosed with tongue cancer. The second opinion surgeon was really great. He plans on removing some of my tongue and wants to take lymph nodes from my right neck. He explained what was to be done and about the recovery. I don't think I can go thru with it. From the stories I read, I can't believe how strong you all are, especially when the odds of returning cancer or death is great. I just don't see the point of going thru all the pain and suffering just to add a few years to your lives. It might be the depression talking, can anyone help me with this?

Hello gameover,

Well..... I can tell you without a doubt that ...My huge tongue tumor would have very shortly ended my life, had I not had surgery.
Mine was a monster that by surgery day, had enveloped my tongue from base to tip-- it invaded my tonsil....it invaded my jaw & my submandibular Salivary glands...it invaded my front & side gumlines ( gingiva)...etc. Etc.
The tumor itself measured 6.3 Centimeters long by 3.1 Centimeters wide, by 2.2 Centimeters Thick !!
Niw, imagine that in the mouth & throat of a tiny person like me ...
By surgery day, my skin was grey/blue color, from low Oxygen-- tumor was Smothering me.
My weight on surgery day was 64 pounds. ( Even with my new G tube).

Head & neck cancer will kill you, and it's not a pretty death....

My team & I had no choice but to take my little emaciated self to surgery. The cancer was killing me. My primary surgeon has been my doctor for 27 years this coming November!! He was my ENT, back when he was just getting started & I came out of Pediatrics.

sadly, it's 2 years later and my cancer has come back, ... A year after my Radiation treatments. This April was my 6 th tumor.
But know what??? I am still alive! I take my 14 year old retired Obedience champion dog for her walks. I'm here for her last days... I go shopping with my feeding backpack on. Do yard work, etc...

If you are at a great Comprehensive Cancer Center, then likely you should Trust their advice on what needs to be done, in your case.

Please don't give up hope. I have had So Many surgeries, both before and after my Radiation treatments. I have a difficult way, but I will keep fighting on.
You too will find that inner strength !

Crystal

Hey Gameoverman,

Dude, oral cancer is awful. It's frightening. Everything looks bleak. Doctors give you statistics and usually worst case scenarios that make you fear everything even more. The treatment is intensive, invasive and long.

I had around 80% of my tongue removed less than 2 weeks ago. I woke up in critical care unit with no voice as they had to fit a tracheostomy into my windpipe so that I could breathe. My face was huge (still swollen now), my left arm looks like it's been attacked by something as they used muscle and blood vessels to make my free flap. I was weak too.

Choosing to live was the best decision ever. It means my husband and I can continue to make a life for ourselves. I get to spend time with my family and friends. I can breathe. I'm not in the pain that I was in before.

Learning how to swallow is difficult, but when you feel that first successful ice chip slide down your throat....total bliss. It pushes you on to do more.
Learning to talk using the speech valve on the trackie is a nightmare. I hated it, but when you speak for the first time with it, ahh dude, it's brilliant. It's such an achievement and show's you're getting stronger.
All of the wins, no matter how their size, make you remember what a great decision you chose when you decided to live.

No cancer is easy, some are harder than you can ever imagine, oral cancer is one of the tougher ones. Choosing to treat it to beat it, that journey is hard, but so worth it.

Every day that I wake up after my surgery, I am that little bit stronger and I no longer have my painful tumour in my tongue.

Crystal, thank you for your kind words. I had a friend contact me today and she said get 3 or 4 more opinions before surgery. Maybe one might have an idea that the others didn't think of. I told her thanks and she gave me a number for her surgeon's name. I didn't know that she had oral cancer and is still working on it after 2 1/2 years. Good luck with your journey to recovery. Thank you again for your time.

Hey gameoverman.

I was diagnosed with tongue cancer about the same time as you were. My preliminary diagnosis was August 2nd and the biopsy results confirming the diagnosis came in last week.

I’m all new to this, it’s the first time that I have been involved with oncologists in any capacity - patient, caregiver, family member - there just hasn’t been any cancer in my family and oral cancer seems like a bad place to start. It’s daunting. All the healthcare professionals promise a bit of a gruelling treatment schedule. They expect that it will get worse before it gets better.

The key point being that it gets better. They are all reassuring about how modern chemo and radiation therapies can cure this awful disease. Some of the others on this forum can give you a much more in depth personal perspective on how they coped with and recovered from oc. I can’t, I simply haven’t walked in their shoes yet.

You seem to be in a dark place. Maybe you need to talk to a therapist, or a pastor or a personal friend to get some guidance in this difficult time? I’m happy to exchange notes on how this progresses, since it seems like we will be in parallel treatments. My first radiation treatment is Sep 12, got fit for the mask today.

Good luck

Hi Barry Toronto,

Ah yes, the mask!

Please know that if you wish to hear any tips or tricks in getting through your treatments, from a Patients point of view, you can come here and we will try to help!
And of course, your Radiation oncologist, and his staff are always available for concerns and questions and should be the first place you ask your questions.

Barry, my R O ( radiation oncoligist) is fantastic !! My treatments ( ha! For now anyway) ended 1 year 4 months ago, but this wonderful man will email me on weekends, late at night, at times within Minutes of me sending him a message. No lie, he is incredible.

I saw him last month for my checkup, and he just gave me a terrible new diagnosis and re presented my case to the Tumor Board, once again..... Ah well...

With my mask, the only thing I asked them to change was to cut out each eye. Because mine was So Tight, that it literally closed my eyes...
My mask covered me down to right above my feeding tube. Shoulders, chest, ....I couldn't move. But I just relaxed into it.... It actually made me feel Secure, and it gave me the feeling of knowing I was doing what I needed to Fight and destroy the cancer.

One thing I did at home, was Practice breathing. I would like flat on the floor, and practice breathing alternately from nose, then also practice mouth breathing. That paid off later when problems with congestion etc. happened..

Sorry to drone on here Barry.
Just know that we can provide patient based advice and perhaps even help.

Crystal

Hi Crystal,

I'm getting fitted for my mask on Aug 28th. I'll take your fab idea to lay on the floor and practise my breathing.

I've been doing quite a lot of meditation since my diagnosis and that has got me through my surgery and the hospital stay. So I'll try to fit in a meditation session when I'm on the table.

Hi Dizz_zzey,

Girl, you just had surgery like mine, to a degree,, and it sounds like you are in pretty good shape-- strong and tolerating as best as you can.

Please don't try to unduly Rush hour recovery, though. Rest...actually, your body will dictate that to you!!

Anyway, yeah, Meditation! When I was doing Martial Arts, I was regularly in Meditation classes. I loved it. And I did Yoga regularly too.

I hope you are getting good Nutrition, through your G tube. You need lots of calories & protein to begin to Heal.

Anyway, take good care and keep all doctor appointments, etc.

Crystalj

Hi Dizz zzey,

I was scared to death that i would not be able to handle that mask being claustrophobic as I am. What really, really helped me were the CD's that I made of every favorite tune of mine that I could think of. I made 4 CD's that took me through 35 treatments. The radiation girls, they were the best of the best, would pop in my CD of choice right after they snapped me down and I would go in to my good space, knowing that the next fifteen minutes were saving my life. I would use a nasal inhaler when I started getting stopped up before each treatment and I would take a Lorazepam 1/2 an hour before treatment which really helped too! If you can just try and get as far away as possible in your mind and know that it is a good thing you'll do great. Although I must admit, after my last treatment I hopped off the table, sunk to my knees right there, and was so thankful I got through it. I hugged the radiation girls and we all cried. Oh, and if it's available, see if you can have a cushion put under your knees while going through treatment. It makes it a lot more comfortable.

I wish you the best and it'll be over before you know it.

~ Thankful Girl

Hey Crystal,

Wow, your guy was strict! I've been up and downstairs, I occasionally water my tiny garden (10m x 5m) I'm doing my physio exercises twice a day (they really help with movement and reduction in swelling). I'm following my dieticians nutrition plan (those nutrition drinks have way too much sugar in them though). I'm a big woman who is shrinking slowly, but that's ok.

I am not trying to rush, I promise. I am listening to my body for when it needs water or rest or even sleep. I'm trying to have some form of a routine, mainly around medication and nutrition so that I don't forget to do eiither.

No aspiration yet, although I feel a tickly cough which I'll mention to my nurse today. Fingers crossed it's nothing bad.

Thank you for your offer of advice, I'll definitely give you a shout