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.