tongue cancer (mother of two boys)

hi there...so sorry to hear your news but you have come to the right place. you will find a lot of support here.

your situation is very similar to mine. I had to have an operation on the right side of my tongue and also a neck dissection so that lymph nodes could be removed. I was terrified, like yourself i have young children and a job where i needed to talk on the phone a lot! To make matters worse it is my own business so the whole lot was under threat. I have to say the following months were not easy, after the operation i recovered quickly and managed to make myself understood within only a couple of weeks. I also had to have chemo and radiotherapy which really knocked the stuffing out of me. But all i can say, and you will hear others saying it too, there is light at the end of the tunnel, everyone reacts differently but you can pull through this and you will find an inner strength you never knew you had.

I was diagnosed in march 08 and had my operation in april. I'm now speaking differently but everyone understands me which feels great, even on the phone. You can do it, stay as positive as possible and believe in yourself. Keep in touch!

Dear Mom of two boys, welcome to the club that no one wants to join. I understand this maybe a quite distressing time for you, however I wish simply to address your your initial concerns. Why this disease arrives to the youngest and most undeserved of people I wish all of us knew, but I have just tried to cope with the cards I have been dealt. So like you, although 14 years older, this is my story in brief, to the present time. Same as you, tongue 80% replaced using my left thigh, 34 glands removed, radio and chemo. Thats it, all since April this year. Today I rekon I am about 90% of my former self, and I am working so hard to better this. I am having speach therapy, I can speak most words and I am told this carries on improving, certainly I have no body that comes to mind that fails to understand me. In fact, and I digress, I feel pretty good, now, and am finding people to be so endearing to my misfortune. I communicate in a more pronounced way, and whether I could rejoin my former company in an international sales role I would't know just yet, as I am still recovering. The biggest hurdle for me has been the self conciousness of speaking again, and the absence of food. Both these subjects are under control now, giving a feeling of being born again, some people would say I have two tummy buttons.

So if I can be of any help, like there are so many good people on this site and out there, the door is always open. I can't say any of this has been easy, but its DOABLE. And dont worry about your job.

Take care Nigel

Hi Mom, I was 28 when I was diagnosed and my son was 10 so sort of know how you feel. It's obviously a distressing time for you all but as Nigel says, even though times can get tough it can be done. Make sure you ask for all the help and support you need at your drs and the hospital, and if you dont feel like you're given enough then shout a bit louder. Hagg.

Hi Mom of Two,

I have had tongue cancer and tongue cancer treatments that run the whole spectrum...surgery, chemo, radiation. The interesting thing is how well you are able to talk after having different stages of surgery...some folks won't know at all of your surgery...but of course we jump to the most difficult scenario in our minds. Fight that urge to think WORST case, as you may be very surprised at how well you can speak. At the moment I do not have a tongue but a flap taken from my arm. Today I'm working 8 -10 hours a day in a technical environment where I need to participate on conference calls....and though I'm not unnoticable in my speech, I am understood (with no tongue).... go figure,... who knew that was possible. So do yourself a favor and stay away from the "dark" areas of thinking. You can face this head on. I notice you are from Ky (USA), if your speech becomes a disability you will have protections by the law, but just know that you may do very well!! I didn't believe it at first....but it's true!!

Stay strong, stay positive and put on your "fightin' clothes" and get after it.

Pembo (Tampa Fl)

hi mom
sorry that you are now a member of the club that no one wants to join,having said that,you will get a lot of support here they are a great bunch of people from all walks of life.i too like you was diagnosed with cancer on the left side of my tongue,because it was what they called superficial mine was treated with chemo and radiotherapy together,i won't deny the treatment was harsh and i did not cope with it very well but it did the job.i suppose i was talking in a whisper for a couple of weeks but then my voice came back and i don't talk any different then i did before.i wish you all the best in your treatments whatever they will be.please keep us informed of your progress and any questions just fire away.take care love shirl xxx

Hi Mum of 2, i read your posting with sadness.
What can I say that would be useful right now/
well dont panic just take on step at a time one hour at a time if need be we all have do do that sometimes.
Any conselation i had mouth and neck cancer and i had to have part tounge removed due to the radiotherapy and i too was out of work after struggling for the first 5 years to survive.
I was at my job for over 15 years and its been difficult but now have ajob P/T which I enjoy.
I amsure in your case its willnot be drastic surgery and most of the people I know with Toungue Cancer have been able to talk better than me and i envy them silly but true.
When people hear Cancer they freak but you have to keep it in perspestive its another desiese that alot ofpeopleget and recover from to lead a good life and sometimes better life for the experience.
please keep posting

cheers

Paul

I met my oncologist and she says I am stage three due to the lymphnode. Tuesday afternoon I will have my results of my PET scan. My dr called me late Thursday to tell me to go to the hospital friday morning and get an ultrasound of my liver. My CT has shown a spot there. While at the ultrasound the tech said she couldn't find anything and she had to call the dr's office to ask where it was on my liver. So I have a small fluid filled cyst on the back of my liver hidden under my intestines and bowels. The tech said it is nothing and some people just have those types of cysts in their body. So no need to worry about spread to the liver. Now I will have my PET tomorrow. My oldest keep asking questions about how I feel and why do I eat so slow. I just tell him it hurts to chew on the left side. My little one has no clue but knows when I am in pain. I found a local community wellness program I am thinking about joining and my husband says whatever I want to do he will go when he has time. They also offer stress management. Also have a yoga class. That sounds relaxing to me. I will have to add some pictures of the kids when I figure out how to.

Thanks for all your encouraging stories and support.

Having surgery tomorrow! They are removing the tumor from my tongue. They are only taking a chunk out of the left side. Also have decided on a neck dissection though the lymphnodes are clear but swollen.

Good Luck mom

You'll be worried but you will get through it ....good luck. x

gordon

Thinking of you Mom - best of luck.

We wish you well.

Mimi

Hi there Mom of two
You won't see us of course however we'll be beside you every step of the way.
All our positive vibes and best wishes.
Love from Down Under
Deborah

Hi Mom of Two...

My heart goes out to you. I'm also 30, and was diagnosed with stage two SCC of the tongue on October 29th - only a couple of weeks before you. They put me into hospital on Nov 10, for a partial glossectomy and neck dissection. They took 25% of my tongue, and found early metastasis into one lymph node, but thankfully it was microscopic.

It was definitely rough. My first flap failed and died, but the second one took and I'm out of hospital and doing really well now. I've been given the choice for having radiation or not.

Like you, I've never smoked in my life and hardly drink.

If there is anything I can do to help, just as someone who can share this experience with you a little, let me know.

All the best, and I'll be thinking of you.

Tamara

All is well I am talking okay now. I slure my s's a little bit but for the most part everyone says I talk fine. My neck is healing fine. One of the lymphnodes did come back positive. So I will be starting radiation at the end of this month. 25 treatments.
Tamara did you go thru with the radiation? I didn't have to have a flap. My cancer was just down the left side of my tongue.

Hi there Mom of Two

Glad to hear you are doing well

I had a tumour removed from the left side of my tongue just over a year ago. Like you I didn't need a flap. My lymph nodes all came back negative so I didn't need to have radiotherapy either. I'm sorry you have to go through that, but best to zap this thing with whatever is available to see it off once and for all! Do let us know how you get on.

My speech is fine, too, everybody says that they can't tell any difference though I do still feel as if I am slurring occasionally, especially if I am tired. I also sometimes feel as if my tongue is very big in my mouth, even though its actually smaller than it was before - do you find that?

Wishing you all the best.

Gwyn

Hi Mom

I'm glad things have turned out well for you. Must be the position of the tumor that helps to determine whether or not a flap is necessary. My tumor started on the underside of my tongue and was working its way up and around; the left side of my tongue was removed up to the center (I used to have a cross-shaped mark near the tip of my tongue; now it looks like an L). My flap looks like I've always got gum in my mouth.

Sorry that you have to have radiation.

May this year be better than last!

Hi Mom, I had SCC in my sinus and 41 RTs but the RT was nowhere near as bad as I thought it would be. I know everyone is different, and that is only my personal experience, but try and stay as positive as you can as I'm sure that helps. All the best. Hagg.

Hi - hope you are doing okay and feeling better. I decided not to go with the radiation in the end. The oncologist said the risk would outweigh what would only be a very minimal gain in my case, and my ENT specialist concurred with his opinion.

I have to have check-ups bi-monthly at the moment (mostly becuase of the failure of my first flap) but all in all, I'm feeling really good.

My speech is excellent and I can eat pretty much anything again.

How are you getting on?

Tamara

I am getting along fine. My radiation therapy starts on Wednesday the 21st. I will be taking 33-35 treatments. I recently found out my aunts husband. ( saying that since no blood relation ) Had tonsil cancer. He under went chemo and radiation therapy. He is doing fine now but never had any surgery. He is 2 years in remission. My dr said I should do fine and be able to get on with my life once the therapy is over. She said I will be able to drive myself to treatment about halfway through. Hopefully I won't feel to bad especially with my two sons to worry about.

Hi! Mom,
I would like to give some of my advice on Radiotherapy and that is to make sure that you apply plenty of skin cream to the areas where the radiation is going to be aimed and it is very important to start as soon as possible, even NOW as this will reduce the burning of the area being treated. I used Sorbelene with AloeVera 2 to 3 weeks before treatment started and all the time during and for a long time after my treatment finished and I never had any scaring or blistering at all ( apart from a little on my right ear lobe where I hadn't put any cream).
I know this is alittle bit late to be giving this advice but it is never too late for this treatment so go for it Mum and good luck with the R/T, mine ended up fine as I am sure your's will.
Love Trev

Hello Trev

Can you please clarify if you put on the skin cream just before the radiotherapy session or after the session. I heard that it was inadvisable to use just before the treatment as the cream focussed the radiation onto the skin causing burns.

Thanks, Vinod

Hi Mom!

As Dr. J. asked Trev, I was told not to have anything on the skin that was to be radiated; if you do it's akin to boiling in oil! No, you don't bubble on the table, but you add to the burns. Someone here (I think it might have been pete228) had some problems because he hadn't been given the warning.

My doc also advised women not to wear makeup on the affected area during radiation as makeup contains metals. Your doc or the techs can tell you exactly where those areas are. I had the tattoos placed on my face and neck so I had no problems identifying the no-no areas; others had their masks marked rather than their skin. (In case you're wondering, you can't see my tattoo marks at all.) Also ask where the exit point is, you'll need to apply aloe or Aquaphor or other gel there as well. You'll also lose hair at the exit spot; mine was at the hairline on the left side of my neck, about two inches or so. My hair is close to shoulder length so the bald area was covered and unnoticeable to anyone but me and my hair stylist.

Before you go in for your appt, wash the areas to remove any residue. You can apply whatever you'll be using immediately after treatment - I usually did it in the locker room before I went for my car. I slathered stuff on every time I thought of it and had only red skin that darkened and eventually faded away. It didn't hurt, peel, ooze, itch, etc.

I was able to drive myself to and from the hospital every day except two. That was only because I'd been told I wouldn't be able to drive during the last weeks so I'd made arrangements with ACS for rides. The volunteer was such a crabby old man and terrible driver that I lied and said my daughter was going to be doing the driving and I didn't need his service.

After rads (1130AM) I'd meet friends for lunch or go shopping or do whatever I needed to do. I didn't have chemo or surgery so I was a lot better off than most of the posters on this board - every one of us is different though, despite what might sound like identical diagnoses and treatment. After doing whatever I needed to do after treatment, I went home and crashed.

I slept a lot! It was wonderful deep delicious sleep with no dreams or nightmares, just great sleep. Am very glad that I didn't have young children to take care of and hope you've made arrangements for help.

It took me until the third day to finally settle in and realize that the rads procedure itself doesn't hurt and is over rather quickly. I counted the clicks and buzzes and memorized the sequence that the machinery uses as it moves from place to place before sending out the zaps. Good fun.

Good luck to you! Keep checking in to let us know how you're doing.

Mimi

Hi! All,
Yes I should have explained that a bit better. Yes the cream that the Hospital supplied was OK to use before treatment however not immediately before treatment and not excessive, but it was important to keep the area covered after treatment and during the night.
Sorry about that I am working in a drug induced state and say things incompletely.
Thank you Doc for picking up on that.
Love Trev

yes it was me that was applying some type of sauve which the nurse had given me a sample. as i laid down on the table to get my rads i mentioned to the tech that my neck sure was burning from the last treatment. they took one look and saw the greasy stuff on my neck and washed it off thoroughly before they gave me my treatment. said it is just like putting grease in a frying pan. i guess maybe it would be okay to use it after a treatment, but one would have to make sure that every drop of it was washed off before receiving radiation. as for myself, the burning was bad enough that i never used it again.

I am only to my tenth radiation treatment. My mouth is so dry. My tongue is sore. I can't taste anything. Outside looks same still. No sign of radiation to face and neck. How do you cope with not tasting anything. I have to use plastic utensils now. If I use metal food tastes like metal.

Hi! Mom,
Just like to keep pass on my best for this part of the R/T saga as the situation may not get much better for quite a while and (I hate having to say this But) Iam still having problems with my taste and that is 17months after my treatment finished. I found that experimenting with different foods and drinks until I found a mixture of tastes and flavours that gave me some satisfaction. Believe me you do get used to the metalic taste and often the soreness of the tongue is brought about by the spices in the food so try and sample different ones, drinkig was a problem and after soooo much water you will find something better(I drink a lot of Iced Coffee which is a big seller over here, and it is nothing to drink 3 litres a day plus other drinks), Have you been keeping up with the cream around the radiation zones this is important.
I was fortunate(if that can be called fortunate) to have a PEG fitted and that gave me a food source(even though it was an unpleasant source) that kepy my weight up and I didn't have problems with my throat soreness.
Well I hope that this helps a bit and keep in touch and
"Stay Strong"
Love Trev

Hi Mom, sorry to hear you're suffering. Like Trev, my taste never really recovered either. It will probably improve a bit with time but you do adjust to it and it becomes the norm.
I found it was the same with the whole cancer thing. If someone had told me what ops etc I would have had done when I was diagnosed, I would never have thought I could live with it. Now, all this time on, I cope fine and rarely think about it. Try and stay positive if you can. Hagg.

I think that this is the worst time, sorry you are in the thick of it and things may seem to get worse but stay strong and stay positive, things will get better.

Yeah now I have blisters. My dr is getting after me because I now have lost 2 and 1/2 pounds in one week. I have about 15 blisters in my mouth. They gave me a magic mouth wash that is supposed to numb for ten minutes to eat but I am not finding this helpful. They want me to get a feeding tube(peg) my husband just keeps telling me to eat but he doesn't understand how bad it hurts like you all do. I am debating the feeding tube I am thinking it maybe easier with the kids, because they are not the most patient while I try to get food in me. Also I currently have no one assisting me with my kids.

Hi Mum

get the PEG!!!if you have so many bisters in your mouth,and are loosing weight then its a must.Its not a big procedure,and you can still eat when you can.Nutrition and hydration are the key to success in this treatment and recovery plan,so don't delay.

liz

Using soluable aspirin can numb the mouth temporarily. Hold the liquid in your mouth for a while and then spit it out. It may help for eating depending how bad your mouth is but dont swallow it and you might want to check with your dr that it's ok for you to it as everyone is different. Hagg.

Hi! Mum,
I think I have said it before "GE THE PEG FITTED", the proceedure is easy(nothing is perfect?) and the abilty to swallow food even down a tube is a lot better than losing excessive weight and having to be fed in hospital when you don't have the strength eat, you can still at times try to eat with the tube in place and you will find that you get used to the PEG food, I had mine for 4 months and I won't lie to you I didn't like it BUT it sure was a good thing to have at the time. So stop thinking about it and get it fitted(Please remember I can only give you my opinion and it is not medical advice for that you need to see you GP)
Love Trev

hi mum

im really feeling for you at this time i know exactly how you feel when you say your husband keeps telling you to eat, he loves you but doesnt understand the pain you are in. However the advice here is right. Get the PEG it will make you feel a bit better and it will stop the "nagging" from those around you to keep eating! I didnt have a PEG but i did have an "NG" tube which is pushed up your nose and down to your stomach, it looks awful but it saved my life, no exaggerating. I didnt want it and fought it for as long as i could, pretending that "i'd be ok" it was just my pride talking. I thought i could fight it all on my own, but it's nothing to be ashamed of and it really helped me phsically and mentally! I ended up with it in for a couple of months and was quite sad to see it go! I worried about what people thought about it seeing this yellow tube hanging out of my nose but you get on with it and actually nobody minds at all! I even went to a wedding with it in!

Whether it is a PEG or an NG my advice would be to get something sooner rather than later. I actually told my hospital they should put PEGs or NGs in everyone before they start treatment as a precaution iam so in favour of them! By the time i decided i needed to have one i was really too weak and was not really in a fit state to know what i was doing. Dont leave it any longer, it will help you. You have enough to cope with, without worrying about how much you can eat. good luck you are doing great.

hi mum

sorry i also meant to say try and get some help with the kids, i know it isn't easy but you will need someone to help you with them x

Hi Mum
I was very upset when I read your post. You poor thing, you shouldn't have to be dealing with this stuff. Like bianconeri, I think that PEGs should be mandatory.
There is so much suffering associated with this damn disease I don't know why it isn't part of the protocol to fit the PEG at the outset and therefore prevent unnecessary distress.
Are you being open with your husband about how much pain you're experiencing. He might be dying inside to see you suffering but is bouying you along because you seem to him to be doing OK and he doesn't want to let the team down. There is no room for heroics in this situation and you must be totally frank, open and honest with those around you. Speaking from a carer's perspective I can say how heartbreaking it is to see your loved one suffering however you don't want to drag them down by showing your own feelings. Everything really needs to be laid open on the table so everyone involved knows just where they stand, what expectations there are and also, everyone's limitations.
I really feel for you. This bloody disease and it's effects makes me so mad. Do you have someone who could care for the kids for you? A family member who could take them to give you and your husband time to get through this together? A friend? BE KIND TO YOURSELF, Mum. You are in the midst of a battle right now, allow your body all it needs to deal with the blows.
It is always such a comfort to know we have the love and support of everyone on this board, I hope it helps you too to know that we are thinking of you down here at the bottom of the world.
Onwards and upwards
Love
Deborah

Thank you guys so much for your input. I think it would be easier on myself to get the PEG my husband can still make his cookies and cream shakes but I can use the PEG to make sure I get enough nutrition. I really don't have a lot of family to help with the kids. My mom is gone and so is my husband's dad. His mom works but helps when she can and the same for my aunt. I am going to discuss it with my husband. I am just worried about my youngest pulling it. He is only 14 months old.

oh and I still have 4 weeks of radiation treatment to go. I wanted to go on vacation in around 2 months but I don't know. At this point I don't even know if I will be going back to work.

hi mom

stay positive you are doing great. i was no where near this website at your stage i was far too tired and hopeless! Even the fact you are able to post messages here is testament to your strength of character. You will get back to work and things will get better.

It will take some time though and you have a hard journey to travel but you will see it through. Dont push yopurself too hard if you dont make your goals just stick in, dig deep, and the day will come when each day feels a little better than the last.
we're all thinking of you.
gordon

Dear Mom of two...
I read your post and felt I had to respond to it. Its a differnt case that I cannot eat or drink orally anymore. However, when I had just finished my radiation, my doctor advised xylocain spray.I used to spray it just befofre eating or drinking anything. It was really fantastic as it made eating or drinking really smooth - no pain and you get all the taste.
However, this is just a suggestion and I could be wrong.
Regards,
Ananth

hi mom
how well i remember the stage that you are in now.you poor lady you must feel so down and it was bad enough for me but i did not have children to look after,you must also be worn out as the radiotherapy takes it out of you.i was given some sachets of a gel but i cannot remember the name of them.they coat the blisters but i still could not eat because i had no desire too.if you can have the peg fitted then i strongly advise you to go for it.i hated people staring at me when i had the ng tube but the peg hides nicely under the clothes.i have my feed going in overnight while i am asleep so it does not interfere with my day to day life.i found at your stage that i could not manage to eat anything at all so the peg was invaluable,now i can eat a little but the peg makes sure i get enough calories and also the feed contains all the vitamins you need.good luck with your treatment and keep us informed of your progress.love shirl xxx