Hi, my name is Barb and I am new to cancer, or cancer is new to me. I was diagnosed just two weeks ago with cancer on my tongue. I don't know what stage I am in, but I have had a CT and will have an MRI on Friday, February 5th, my 47th birthday(a $100.00 gift to myself). I am not crying as have been a smoker for years, but I am scared. My doctor is wonderful, calm and exudes positive energy. He's also not bad to look at. He says that he will replace the piece of tongue that is extracted with a piece of my inside wrist flesh. Pretty cool, if you ask me. I guess I will be in the hospital for about 3 weeks, recovering, which puts stress on me for my family.

I have a loving husband and two daughters, aged 9 and 12. They are dealing with this pretty well, but I have not mentioned the "C" word to my girls. My mom will come from Florida to stay with them, so that is a relief. My husband will appreciate her support. HE can't cook.

The surgey may involve a tracheotomy and a feeding tube, so it sounds so scary. Any feedback?

Staying positive in Colorado

It's good to see the positivity in your post, even though "scared" you've got humor there and that's a good sign. The hardest thing I've ever done was tell my kids (4 and 7 at the time)I had cancer...I don't regret it but it was hard on them and me.

The more information you can provide, the better feedback you'll get. The staging etc... Where are you being treated? Comprehensive Cancer Care centers are the best places to start. The surgery and treatment can be scary, however I think you'll do just fine.

Best Wishes

Eric

Hi EricS and all,
I have this insurance called Kaiser, an HMO. They were so busy with new cancer patients that they referred me to a surgeon and his team in the Denver Metro area. This office is a "Head and Neck Surgical Specialist" place and he said he has a multi disciplinary team that will review my case and come up with the best treatment plan, such as the one I mentioned in my first post. I don't know enough to speak as if I do, so I will keep asking questions.

Can anyone fill me in on being in a hospital for 3 weeks or more? That's possible in my case, and the only 2 times I was ever hospitalized was for an overnight for each of my kids' birth days. What should I bring? Can I wear my own night clothes? Can I bring my laptop?

With a partial glassostomy sp? (tongue removal) will I be able to speak within a week, two weeks, month?

I have lost 20 pounds so far, but is this from the cancer or because it hurts to each with an ulcer on my tongue? I am eating more since I began reading other posts today that said that the feeding tube will cause more weight loss.

This is good because I love to eat, but have a painful time of it with the ulcer. I am currently craving empty sugar, but have restrained and been eating bananas and yogurt. And to the guy who suggests chocolate pudding with lots of whipped cream. "I love you, man!"

These are just a few q's to start. Thanks for the encouragement.

One more, what is a young Frack?

Barb

Barb,

I like your attitude. Looks like you are ready to fight.

I had a hard time telling my 12 year old but they have to know at some time. I took him to the center I was being treated at to see where I was going all the time. That helped.

Take some time to view as many posts here as you can. I did when I started and it helped me tremendously. There are some scary stories here but also some fantastic tales of personal courage.

Ask us anything you want. Someone here will have an answer for you.

Kelly

Thanks Kelly,

Good advice about taking my daughter to the center. She loves science, and will hopefully have comfort in knowing that I will be in a safe place.

By the way, I don't know what you mean by center. I'm assuming by your post and Eric's, that there are cancer centers where all the treatments are done. I will ask my doctor, but I think I will be at the hospital for everything.

Thanks also for including in your profile that you quit smoking. I continue to cling to the single morning smoke, but will give that up on Friday, my birthday.

Also, can you describe where the soft palate is?

Thanks,
Barb

Welcome to the forum, Barb, and good fortune in the coming battle, whatever form it takes. "Frack" is a word used in Battlestar Galactica in place of a well known 4 letter word, if I may be so bold as answer for Eric.

Barb,

I have said this before: I do not have to suffer the question of why me? Many here who did nothing to deserve this terrible disease ask themselves that every day. As a smoker for years I knew I was playing Russian roulette. I did this to me.

My doctor told me he wanted me to be a non-smoker BEFORE treatment started, so I worked my way down and then went on the patch.

Funny thing about kids, they will imagine what they know. I was treated at a Cancer Center, not a CCC (Comprehensive Cancer Center), but I had two opinions from CCC�s that concurred with the treatment I was getting. The center was only 6 months old so everything was state of the art. It was very nice and my son liked it. When we left I asked him what he had imagined it looked like before our visit and he said the emergency room, which was a scary place for him but the only hospital he had ever been in. He was impressed with the IMRT machine and my center had a waiting area with wood paneling and a fireplace. Looked more like a Hilton then a hospital.

By the way; As much as you like your physician, you need to get second opinion. Someone here can post a list of the CCC�s available nationally. The University of Colorado in Aurora is your regional CCC so I hope that is close.

Kelly

Barb

sorry you had to join our little club. Yes, it is pretty cool how they take a wrist flap, replace the part of the tongue they cut out, and graft skin from the thigh back onto the wrist. I had all that done and more yet (see my signature block), I was in the hospital for only 12 days, and cannot imagine three weeks.
I am curious why your doctor is not starting out with radiation and chemo instead of therapy. Take it from me, tongue surgery requires a lot of speech therapy to recover from, plus it make swallowing very hard and in some advanced cases like mine, impossible. They can always do the surgery if the radiation & chemo does not work. What my team of doctors all said at the CCC was that they were very very good at taking me apart to get at the cancer, but not so good at putting me back together again. One more reason to get a second opinion.
Charm

Barb,

Here's a list of some CCC's

http://www.oralcancerfoundation.org/resources/cancer_centers.htm

Barb,

David (Deejer) was kind enough to explain "frack" to you. It's a title and term of endearment from my friend and "frackhood" founder Charm (Old Frack). Where age seperates us our outlook and attitudes are very similar.

Hopefully you are getting the recurring theme here, which is get a second opinion and do so starting at a Cancer Care center or a nationally ranked medical facility. This disease warrants a second look even if you feel comfortable with your current medical team.

The soft palate is the muscle and tissues seperating the nasal and oral cavities, constituting the back of the roof of the mouth.

Barb,
So sorry you had to join this club. I like Eric, had a hard time telling my kids. Once I did they were able to ask questions and we were able to celebreate the last day of treatment today. Please keep us updated and do let your kids know what is going on. It will be hard, but it will be easier for them to understand what is going on if they know.

My surgeon looked like Andre Agassi!

After a multi-disciplinary team looked at me and made a team decision I didn't ask for a second opinion. However, things are different in NZ where there is less choice.

I had the wrist thing and was in hospital for 2 - 3 weeks. It took so long because my tongue took a while to heal enough for me to practise drinking and eating. It drove me mad being in a ward so long but in the last week I was able to go over to the cancer hostel my husband was staying in - a huge relief.

As soon as they took the trachie out I could speak intelligibly. There was a rapid improvement after that - same with my swallowing. I had a lot of tongue out and I'm still waiting for the flap to go down. I'm three to four months out and expect a good outcome eventually.

Welcome to this group. Sorry you have to join us - but still welcome. All I can add to what everyone else has said is to eat, eat, eat, eat, eat, what ever you want. Don't worry about bad sugars vs good sugars. Just eat anything and everything you want. And as far your children go - I think you will be surprised at how well they understand and will rise to help you. May I suggest you purchase a bicycle horn. I had one at home and one at work. After I lost my voice I used it to summons my family and co-workers. We still get some good laughs about that horn now. Good Luck

Welcome Barb. I have tonsil cancer, not tongue cancer, so I can't offer any wisdom or experience with the procedure you are about to undergo. However, I love your positive attitude - humor I think will go a long way in helping you keep it throughout your journey.

I don't have any kids but did find it difficult to break the news to my cats They took it better than my husband did !

Anyway, just wanted to add my welcome; I have found this site to be an invaluable support tool so far. I start my chemo/rad treatments on 2/8 and take comfort that the folks here will hear me.

Chris

Alpaca . you sure have a good positive outlook which is needed for this nasty stuff. Ihave a good feeling for you and your toughness.

Barb,, welcome to our home and a lot of good friends with great advice. I did notice that your Dr isn't bad to look at either. LOL You ladies are worse than we guys. You have a great attitude and will beat this. The worse part is the wondering how long for things. Time goes by a lot faster than one would think tho. I wore my at home clothes in the bed after I was awake enough to put them on. Good luck lady and keep up with the positive outlook on things, It makes a difference. Heck, I was walking the halls more than in the room.

lol...i had been puzzled about the "young/old fracks" also, but made my own assumption of what it meant...turns out i was right .
welcome to the forum.
i dont have "little" ones, my youngest is 17 but it is always hard to tell them about the c word. just find a way that they can understand it.
good luck in your treatment and keep us posted.

Hi Barb,

Welcome to OCF. I'm happy that you found this site so early on in your journey, it will help you.

My cancer was also on my tongue, on the right side. I've had 4 partial glossectomies. I won't lie, they are painful. Eating is virtually impossible for the first week at least. But...you will get through it. Plus you have a wonderful attitude and outlook and that is more than half the battle. I'm happy that you already feel that way.

I would suggest at least going for a second opinion. Where in Colorado are you? I have an aunt who lives out there and she was a nurse at a cancer center here in PA. I'm sure she would have some good suggestions if you would like me to ask her, just let me know.

Hi, I'm back. I have been busy with life, but needed to check back with all of you for feedback from last replies. I just want to thank all of you for answering my questions and providing me with support. I am scheduled for surgery on Monday, March 8th and I am a little scared. My mom and dad are coming from Florida and my 12 year old daughter has made me "pinky swear" that I will not die on the table.

Many of you suggested that I get a second opinion, but I just feel "right" about my doctor, Chris Oliver from Swedish Hospital in Denver.

My parents belong to a Unitarian Church in Ormond Beach, Florida, and the outpouring of support from the congregation has been incredible. My mom's friend from Iman even sent me some Frankincense. My doctor's teammate, Dr. Imola, will help him with my surgery, without payment because his practice does not accept my insurance. Tears of gratitude and joy, glisten on my face, even as I type. There is a Buddhist group who have kept me in their daily prayers. Wow, the love I am recieving is glorious. I know everything will be o.k.

Barb

Hi Barb,
I'm sending my love and best wishes as well.It sounds like you are in good hands with the surgeon you have.
Best Wishes for a speedy recovery.

David(UK)

Barb,

In May of '08, I had the surgery that you'll be having. After about a week, the swelling went down enough for me to put my lips together and from then on, my speech was intelligible. It was another week or more before I could put my teeth together though.

Today, almost two years out from surgery, no one that meets me now has any idea that about 1/3 of my tongue is made from my wrist, and with a new career in sales, I meet new people every week. I believe what 'saved' me is my surgeon was able to leave the tip of my tongue so speaking is roughly the same as it ever was. That said, the radiation/chemotherapy did leave me with a drier mouth, eating is still a challenge and I have to be ever diligent about recurrence, mouth care, etc.

I guess the gist of my post is, you can't predict what's going to happen or what your body will be, do eat your favorite foods as you are able and just focus on one day at a time.

- Margaret

What surgery are they proposing? I forgot?

Margaret, maybe that is part of my speech problem They took the tip of my tongue for my last biopsy a few months ago. It didn't shut me up tho. LOL

Hey Barb,

I remember the day over 10 years ago, when I was diagnosed with stage 4, squamous cell carcinoma. I asked the surgeon how long I had. He laughed and said,"We don't talk like that any more. The time you have left will depend on you as much as your oncological team."
He coached me on staying positive and I can't tell you how important that is. There may be times when you despair but keep in touch with us and your family and friends.
Incidently, I was also a heavy smoker and have only recently been able to quit, thanks to a miracle drug called Champix in Canada and Chantix elsewhere. Chin up, good fortune and call if you need any support, advise or info.

PS I was 53 when diagnosed, I'm 64 now.

You sure have that right about the positive attitude. I was given up fpr dying a couple of times but told my Dra now way was I gonna die,. I had the positive attitude, exercised and worked outside my home and inside if the weather was bad, was my own caregiver and here I be. LOL Still smiling and enjoying life. I had an aneurysm repaired 1 yr ago , but only half way but I do 100 to 200 reps a day with my arms. I feelke a kid and am 74. Good advice serfivr.

That's great! I'm a firm believer in that if you quit doing things, the less you are able to do. Keep up the good work.