big tumor but it is localized and I am hopeful. I'm 33 recently married and a light drinker and non-smoker. Very sad.

misskate,

Welcome, but sad you are here. What are the treatment options your are discussing with your Drs? Have you had 2nd opinions? Tell us your story...

I'm at UCSF. Several opinions. I definitely have to get surgery , tongue reconstruction, lymph nodes removed and radiation therapy abd now maybe chemo with the radiation because I am young and they want to insure that they get it all out so I have more chance of surviving. So I have a long tough road ahead of me. I just finished up work- took a leave of absence etc- so at least that piece of my life is settled so I can focus on getting through this and getting healthy.

I'm just trying to take each day one by one- and be positive- that's all I can do.

KB,

They didn't offer me surgery for my primary BOT cancer although I did have a neck disection and many nodes removed. If they would have offered me surgery I would have taken it. They said because of where the cancer was located and size surgery wouldn't be prudent. I wanted to throw the kitchen sink at this, so I had radiation and chemo.

You do have a long tough road ahead of you. It's good that you are in a position where you can take leave from work and focus on yourself. There are many folks around here to help and support you through this. Just let us know what you need.

Godspeed on your journey.

Tim

KB,

Mine was big & spread out. Like Stoj, I couldn't get surgery and had to go the chemo/rad route. Not the most fun I've ever had, but not as bad as I feared.

I'm a strong believer that knowledge is power. This board is a great resource. Ask away...

Clint

Greetings misskate

My guess is that it is pretty chilly in San Francisco these days?

Its great that you can focus all your energy on the task ahead of you. Your attitude sounds great to me. There are so many folks here on this website that can offer help and support, you are definitely in the right place.

I'm twice your age but I was fortunate that surgery was an option for me. I quit all of my bad habits at age 58, but not soon enough. There is just no escaping your past I suppose.

I'm wishing you all the best on your treatment and recovery.

Russell

Actually Russell it's been pretty nice the last few days with temps in the 70's predicted. The chilly time is during the summer. Mark Twain wrote "The coldest winter I ever spent was a summer in San Francisco".

KB,
I was treated ay UCSF as well and still go to Mt. Zion CCC for follow-up. They are the 7th highest ranked CCC and the only public one on the list. They have some top rated docs and researchers there.

Hi: I've just been diagnosed with cancer at base of tongue. Instead of surgury on the tongue (they will remove nodes in neck) they are going to insert radioactive seeds in my tongue and also treat with radioactivity and chemo. You may want to ask about this option. Ed

Hi Gary- How did your treatments go? Who did you do the IMRT with? I'm so so scared for the surgery but know that the radiation and chemo treatments are probably going to be the hardest physcially and emotionally.

I feel likeI am one of the yunger people out there with this disease. I only smoked casually in college and I just drink wine and beer occassionally- not hard alchohol. I don't know how I got this. The Doctors are saying they are seeing it more and more.

misskate,

You may want to have them test you for HPV. We were told recently that, I believe, 70% of new Head and Neck cancer patients tested at John Hopkins tested positive for HPV.

There have been numerous posts on HPV and it's connection to Oral cancer since I have been a member of this site.

Hi Mistake


Welcome to the group, unfortunatley you have to be here , but I can tell you as a new comer myslef if you have to be anywhere this is the place to be and the people to be with . I am fairly new to this myself. But i can give you any info I have on my experience. I am 35 non smoker very casual drinker ( very, not even once a month ) 10 days ago I had 20% of my tongue removed and 32 lymph nodes from left side of my neck ( all clear). My face is swollen and neck and tongue ( LOL) I am in discimfort. But I am ok cus I am cancer free at the moment. I do not know if I need chemo or radiation I will find out within the next week or so. so anything i can answer for you feel .free to ask. Second opinions are good

Hi Mistake

I am the care giver for my husband Marvin. We too have just found out that he has same type of cancer. At first we felt our whole world was destroyed but after seeing the doctors, lots of prayer and finding this site we are doing much better. We live in Indiana and for the past two weeks had bad snow storms and you can guess we had to drive 65 miles to indianpolis for our appt. But with Gods help we made it to all of them. Marvin will be getting both chemo and rad just not sure what kind of rad. They haven't said anything about surgery yet. You and your family will be in our prayers. We will all get though this.

I had surgery for SCC of tongue 5 months ago at UCLA,with a free flap reconstruction and modified radical neck dissection.

The information I found on this site helped me to be prepared for what might be coming, and also what questions to ask. For me, knowledge helps combat the fear. The information and encouragement here are so helpful.

I had the cancer removed, and almost 1/2 of my tongue. Because so much was removed, they reconstructed my tongue with tissue taken from my left forearm (called a free flap), which was in turn covered with skin grafted from my left thigh. I also had a modified radical dissection of all the lymph nodes on the right side of my neck. My nodes were all negative for cancer, so my prognosis is very good. No further treatment is planned - Had no radiation or chemo.

They will check my tongue this month to see if it needs to be trimmed for better speech. My speech is almost back to normal already, but the "new" tongue is probably a little larger than it could be, so think they will end up trimming it at some point. I was never completely unable to talk, but right after the surgery the tongue filled up my mouth so it was pretty garbled, but understandable. It has rapidly improved. Already, people who don't know me say they didn't notice anything until I mentioned it. I feel like it sounds like I have gum in my mouth.

My scars are healing beautifully - I am amazed at how well. I have been able to eat since a week after the surgery - eat about anything I want - some things irritate my tongue a little, but nothing has been unbearable.

My neck is recovering great, too. They removed a muscle, so there is some tiredness, aching sometimes, but I have full range of motion of both my head and my arm/shoulder. I have most of the feeling back on that side (was somewhat numb from ear to shoulder.

All in all, I feel totally blessed to have had my treatment at UCLA and at the miraculous recovery potential of our bodies.

You are welcome to contact me via email for more specifics.

Rhonda

Misskate,

I was younger than you when I was diagnosed 4+ years ago (just turned 32) and had zero risk factors. I had 1/3 of my tongue removed and a modified neck disection. I also went through radiation.

The information on HPV is good above. You should ask your doctors to check for it just in case.

Take care and fight hard,
Jim

i too had 1/3 of my tongue removed i was lucky so far 3 yrsit is a long hard fight.i was in alot of pain didn't let it get me down went back to work within 2 weeks,i had to take it easy though.i had the very best surgeon
lynnlynn

I replied to you privately but you haven't read it yet. Click on "my (your) profile" on the top of the page.

i can't find it please cantact me again i am new at this i will keep trying to find i'm sorry just help me out here


lynnlynn