My name is Chelsey, I am 21 years old and was diagnosed with tongue cancer on December 3, 2009. I am a non-smoker, have the occasional drink, otherwise healthy 21 year old. I had a tumor removed from the side of my tongue on December 16, 2009 that was about 1.5 cm in diameter. Two days before Christmas i was told that the cancer had spread beyond the tumor removed and i would need to have futher treatment. 4 days ago which would be about 3 1/2 weeks post-op 2 small tumors have come back... I am going to the BC Cancer Agency in Vancouver on the 18th of January to see the oncologist and the head and neck surgeon. I have been told that i will need radiation and more surgery. I am so scared and i feel absolutly broken. I am the first person in my circle of friends and family to have cancer and i feel so alone....

Oh Chelsey, 21 seems way too young to be dealing with this. I'm so glad you found this site. It will help get you through. If you have any questions, want to vent or anything then this is the place to do it. You will meet some amazing people on here that will help you get through the road ahead. Everyone on here has been through or is going through what you. Be it as patients or as carers.

Probably the best advise I can give you now is to stay positive, ask lots of questions and get as many calories as you can. Read this site as much as you can because you will learn so much. I did that and having some knowledge before we went through treatment certainly made it seem less scary, less of the unknown. Take care and keep us posted on how you are doing.

Wendy

Chelsey-You have come to the right place. You will find alot of support here. Pay attention to all the advice you get. These people are survivors and have helped me beyond measure.

Chelsey
Welcome to OCF. Im so glad you have found this forum. It will help with your questions and give you the support you will need to get thru this. When people ask what they can do for you, at this point just make a list and write down their name and number. After treatment stats you will need help with things.

Right now try not to panic, it wont change what you have. Try your best to enjoy yourself before you have to focus on treatments. Go out to eat with your friends and family. Eat everything you can and dont worry about gaining any weight. Once you start treatments they can be difficult and you might not feel much like eating. You could be pretty tired too. Being so young will help you get thru this. You may not experience the side effects as much.

If you have any questions, please ask. We will do our best to help you with honest answers. One thing that is very important, always take someone with you to your doctor appointments. They can write down info you may not have heard.

Best of luck with everything.

Hello Chelsey,

Welcome to the forum. Odd to get cancer like this when you are young, but it is a weird diseade! Great support here and advice to help you with your trearment. Many of us have gone through the treatment and we are still typing! Please let us know what the oncologist and ENT says.
You are not alone. I am sure that your friends and family is BC will suprize you with support.
You also have a thousand new friends here!

Steve

welcome to the OFC chelsey! u are very young but more and more i see that cancer doesnt discriminate. it gets the young, the old, black/white and everything in between, healthy and sick, rich and poor.

this is a super site with newbies, those going thru treatment, and survivors. u will get alot of great advise and support here. please keep us updated.

Chelsey

Sorry you had to join our little club. My advice is to insist on getting a TSH blood test of your thyroid BEFORE any radiation. Without a baseline of your TSH level before radiation, you will find it very difficult if not impossible to get any doctor to take seriously the long term complication of radiation damage to your thyroid. It may not happen, but if it does, you only need to take one little pill. I have had to fight for two years before I finally found an endocronologist to help me and that is only because I dug up a forgotten TSH blood test done a month before radiation. I know you are scared, and there are lots of things to do, but this is an easy request since the doctors will be doing lots of blood tests anyway.
charm

Chelsey,
I too remember those dreaded words. You have come to the right place for support and encouragment. Many of us have been where you are. I second what everyone is saying, eat as much as you can now! Rant and rave al you want. I know I did my share on here and was always encouraged. You will be inn my prayers.

Chelsey,

I have a sister your age, her name is Chelsey as well...I can't imagine getting this news at your age. I'd give you the same advice I'd give my sister...make sure you are getting the absolute best medical advice available to you. After that the only thing you can control is your nutrition and your attitude.

I'll echo what others have said, stay calm this doesn't mean it's certain death, eat all you can as you can and hit these forums to vent all you need and ask questions.

This site has soo much information and the people are here to support you.

Good luck my dear, we are here for you.

Eric

Chelsey, welcome aboard the greatest site and the mst intelligent peole for OC tha could possibly be. Mine measured out at 1.5 also but then reappeared on the rigfht side of my tongue,. It's tough but you will do it and win. We have had as young as 14 I think it was , a young girl from England. She kicked and won but after many problems. When you get into treatments, drink a lot of water everyday. Good luck and we are all behind you so keep us informed.

Thanks everyone for you support, i have been told that i will need to have more of my tongue removed and graphed and have a radical neck disection, with all the lymph nodes removed on the left side. With this surgery i will have a trach and a feeding tube :'( I am sooo scared about this and i have no idea what to expect to feel like with all these tubes going in and out:( Any words of advice for having a trach???

Hi Chelsey, sorry to say I can't offer you any advise on this one but I know many of the guys on here have had this done. It's only a matter of time before they see your post and answer your question the best they can. I will be thinking of you.

Wendy

Thanks Wendy:)

I have had two trachs and no, they aren't anyones idea of a good time but they are certainly manageable IF you don't panic and do the breathing exercises they tell you to. Had I relaxed I think the first time would have been ten timex easier. It kinda grossed me out but in the end it is just there to help you, and another thing to"get through" . Beforeyou know it you will have forgotten it ever happened. Good luck

Donna

Your situation sounds similar to mine. I had minor surgery then major surgery - only difference is that there were two years between - and I'm 40 years older than you. I wondered if my aging body would handle it but there was no trouble in that respect!

I had a trach (end of October) and a feeding tube in my nose. I wish I had found out more about the procedure before I went in. The trach frightened me a bit at first but at the end of the first week I was cleaning the tube myself and even at my age the transition from the first trach to the second was easy and the removal problem-free. I have a neat little scar so no worries there. If you could ask them before surgery to explain how the trach functions and how it is kept clean and clear, that might help. I was a bit confused about the suctioning and so on to keep it secretion free. Overall it was very doable.

I didn't like the feed tube much because I felt they force fed me with supplements but it is put in when you are barely conscious and is easily taken out once you can swallow those lovely liquid foods yourself. Apparently the protein is essential for healing and the person with the most authority seemed to be the dietician!

It's a horrible thing to happen to someone so young but when the time comes for the surgery you will cope day by day. Get all the info you can about the procedure and be glad that the cancer will be gone.

Chelsey

The lack of information I got before and after the surgery about the trach was scary to me also. The doctors and nurses just seemed to think it was so routine a procedure compared to the tongue surgery and free flap reconstruction and neck dissection that they just glossed it over.
The good news is that the trach really is not that big a deal. While I hate the PEG tube, I have to admit that getting that was better than the interim nasal feeding tube because with the PEG tube I could deal better with the mucous buildup after the surgery. They do wonders with the trach and in a few days I had a special valve put into the trach hole so I could talk easily. Amazingly, you just end up coughing or suctioning out the mucous in the trach, then keeping it covered with a bandage, and it heals up neat as can be all on its own. It turned out to be the easiest part of my cancer treatment, but still upsetting on an emotional level as I would look in the mirror and think: OMG, I have a hole in my throat!.
Charm

Hi Chelsey,

When we first went to the ENT, he was very thorough in explaining all the things my husband would have to have done along with the cancer surgery, ie, trach, NG tube, catheter, and JP drains. (There may have been more but I can't remember.) The surgery was a week later and with all of the pre-admission testing, we had little time to digest all of it. The ENT did say it would be challenging but he kept reinforcing that my husband and I could do it.

I guess I am trying to reassure you that YOU CAN DO IT! You are young and resilient, and you have many others who have been there and if they can get through this, so can you.

As my husband's caregiver, I cleaned and suctioned his trach. I got to be very good at it. Do you have someone who can help you with this? My sister is an RN and she stayed with us our first night home. I admit that the first few times I was nervous, and having her there reassuring me, really built my confidence.

Now, two years later, there is a faint line on his neck, like a distant memory. I wish you the best as you move forward. Hang in there--YOU CAN DO IT!

Anita

Chelsey- I am so sorry to ehar of your diagnosis. It sounds like you have very good resources. I know it is terrifying at first to accept that you have cancer and that you have to go through these treatments. You will be resiliant. It isn't fun but you will get through it and come out healthy and strong again.

Be strong honey.

KATE

Chelsey,

From my experience, between the trache and PEG, the trache bothered me more because it caused constant coughing. Needless to say, the trache had to be suctioned and cleaned on a regular basis (I had two trache pipes which alternated between what's being used and cleaned). That was the only problem I had with the trache which, incidentally, was removed much earlier than my PEG. The trache wound also healed much faster (within 24 hrs) than the PEG wound.

Jojo

Welcome, Chelsea. Neck dissection is kind of a hot button issue on this forum. Many have been told they need it, then got a 2nd or 3rd opinion that they didn't. When it comes to something like that, one doctor's opinion is really not enough. Best of everything to you.

I got 5 opinions. First one said No ND, 2nd one said YES ND, 3rd one said Radical ND, 4th one said Partial ND and finally #5, Moffitt, said NO ND and oddly enough they gave me the highest % chance of survival which really doesn't mean anything but it was curious.

Hi Chelsea,

Feel free to email me with any questions at [email protected]

I was diagnosed at at the age of 25 in Sept 2008. I'm still fighting this thing, but I have been through much of what you will have to go through, and I'd be happy to share as many words of advice, encouragement, and knowledge as I can.

I wish you the best through all of this and please track me down if you'd like to talk,
Kristen

Hi Chelsey Honey, I have a 21 yr. old daughter, so I feel very "motherly" toward you. I am so sorry for you to be burdend with this @ such a young age. It will cause you to have to deal w/such grown up issues. You Can Do It. Take 1 day @ a time. You (in no time flat) will be feeling better, healing & getting your old life back. During around the 5th week of radiation, I wrote my dr. a note, saying " can't do this anymore" She ever so sweetly reminded me of her warning, that treatments are not easy. I pressed on. I am fine. Not the same, but here to talk about it! And so will you! You will look back on these days that call for courage, and take pride in your accomplishment! All my best to you sweetie. I have not stopped thinking about you since I first read your introduction. My every thought of you, is also a prayer for you. Press On.

i have children ur age as well and couldnt imagine them having to go thru this. as dianne stated, it is awful u are burdened with this at ur age.
i feel for u and will be praying for u. but u can get thru this.