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

Hi Thankful Girl,

I'll ask if I can bring a CD in, that would be fantastic distraction.

Why did you use a nasal inhaler before each treatment? What did that help/prevent?

I'm already on an anti-anxiety tablet as it's also a pain relief med too. So hopefully that'll be enough, if not I'll speak to my Doctor.

Great shout about the cushion under the knees, I'll ask the team tomorrow (when they fit me for the mask).

I cannot wait for it to be over as it should finish on the week of my 40th birthday, which means a double celebration. I think I too would sink to my knees after the last session. It sounds so intense. I might even need chemo added to the sessions once a week. If I do then I do.

Have a great day.

Hi Barry,

I saw in one of the posts below yours that someone brings a CD into radiation. That’s a really good idea and the radiation technician will allow you to do that.

Please do make sure that you have cream (Lubriderm is fine) to put on your neck you when you come out of radiation, but NOT BEFORE. If you think of a fried egg in hot oil, you’ll see what will happen to your skin if you put cream on your neck before radiation. It is, however, very very helpful that you put cream on your skin when you come out of radiation. It keeps the skin moist and there’s less chance of sores developing. Do pay particular attention to the folds in the skin, don’t miss those spots.

We also did saline soaks several times a day. It’s simple to do. Put saline (store bought) on a j-cloth and put it on the areas which are red after radiation for maybe 5-10 minutes. Then dab the area dry, put Lubriderm on and cover the area with a non-stick dressing. The non-stick dressing is available from the pharmacy at the hospital. If not, you can try Shoppers Home Health (I noticed the other day that the one near my house is now re-named Wellness, same thing).

Do keep on doing your swallowing exercises. You want to work your swallowing muscles as much as you can. Our RO suggests even dry swallows will be helpful.

I’m here to help, so if you have any questions, please ask or you can send me a pm.

Hey there! Just now responding to your first post because, well, it took me back to how I first felt when I first learned I had cancer. (The first time.)

We didn't even know it was a possibility, actually. I had a sore that wouldn't heal; several doctors did their thing and it still didn't heal, and so the ENT said, "You know, some sores just don't heal till you cut them out and give them a fresh start." As this was several months in, we figured it was worth a try, and agreed. Came out of that surgery (which I guess we could rename a really big biopsy) with a diagnosis of cancer. Except he got enough of it that it was also the cancer removal surgery (I had a lot less tongue after that!) and he'd worked super-hard to get clear margins. I think he must have suspected, but didn't want to scare us until he had to.

The scary stuff came after ... talking to all the specialist. We were sent to speak to a medical oncologist (the chemo guy) who gave us all the worst-case-scenario terrors from his perspective, and I think even a radiation oncologist who scared us with all his stuff. And back to the ENT who wanted to to a neck dissection on that side to check lymph nodes, even though the scans were showing clear ... just to make sure they'd really gotten it all. This took place over several months, because he really DID do a thorough surgery ... my worries got me to a doctor first in February of that year, the surgery was May, and the neck dissection didn't even happen till August. NONE of the other treatments the other doctors tried to terrify me with happened at all. They were telling me what MIGHT happen, not what WOULD happen for my treatment plan.

That round, I got lucky. (Though I still rather regretted the neck dissection.) However, by December I had a recurrence. So all that scary information turned out to be useful. It also helped weed out which doctors I wanted to see. The ones who said "It has to be this way, and this way only" and had no compassion at all ... I struck them off my list right away. I didn't care what other folks thought their success rates were (unless they had firsthand experience, not just gossip), because I have fairly complex medical issues as it is, and I require a doctor who will listen. We'd already winnowed out several of those that wouldn't!

And you know what? That stuff you think you couldn't possibly bear to go through, the first time you learn about it? It's amazing how your mind can change when this stuff comes BACK to scare you. Yes, it totally stinks to have to go through it at all. It's horrid, and there's not a nice word in the dictionary to describe it, except for at the end when you can say it's "over!".

But you're HERE to go through it, and you've got lots of folks who will help cheer you on, tell you when you are allowed to fuss more (yes, it's okay to ask for more pain meds if you need them, stuff like that!), remind you to ask for help and second opinions, and all those other things that we need reminding it's okay to do. And like someone else said ... The Cancer WILL kill you, eventually (and it will hurt way worse than the treatments). The treatments feel like they're trying their darnedest, but they are also trying to save your life. You're the one who has to decide if that life is worth saving. Me, I had two young kids (now two teenagers). Being there for them seemed the right choice. I'm not the mom they would have had without cancer, and we all grieve that ... but it's better than no mom at all. Yes, you're allowed to grieve the changes you go through. But YOU are still worth it.

Hey There Dizz,

After many radiation treatments my sinuses were getting clogged and the nasal spray helped open them up so I could breath easier with that mask on. Not being able to breath is bad enough, but add the mask and, for me anyway, it was a recipe for a full blown panic attack. Another thing that helped, which is probably done for all patients, but they gave me a foam ring to hang onto with both hands over my stomach during treatment. It made laying on that steel slab much more comfortable along with a warm hospital blanket. Every little thing helps. I hope they'll let you bring in your own music. Most treatments last about 3 to 4 songs, depending on which ones I listened to. Lynyrd Skynyrd has some good long ones. Oh, and one of my favorite artists is Diana Krall. I've never really been in to Jazz, but her music is fantastic. She has a song called "Peel me a grape" that lasts almost the whole treatment. Believe it or not, I found myself wishing the treatment wasn't over a couple of times just so I could finish listening to the song that was playing. LOL!!! That was when I knew I had accepted the reality of this, in my mind, barbaric treatment. As I said earlier, one thing that truly helped me besides the music was just believing every time they locked the mask down that it was a good thing and any cancer that may've been left after surgery was being zapped away forever.

I had two rounds of chemo. Fortunately the anti nausea meds really worked. Besides lethargy, I hardly had any side effects.

Oh yeah, one more thing. When they fitted me for my mask, they also fitted me for a mouth guard, but they did not do a very good job of molding the guard to my teeth. Be sure the guard is as comfortable as possible for your bite.

You'll do great! It awesome that you'll have two things to celebrate when this is over.

Take Care ~ Thankful Girl