I am just starting the battle with tongue cancer.I had a stage 2 cancer on the right side of my tongue,had it removed 2 weeks ago along with all the nodes on my right side,which all came back negative for cancer.Am recovering from the surgery fine,lost about1/3 of my tongue so I can still talk and am adjusting to eating.In 2 weeks I am to see about radation treatments and i have read some pretty nasty stories on here.Am wondering if anyone out there has bypassed the radation and still doing ok.The Dr that did my surgery says that he feels good about the surgery that he got all the cancer but the radation will be my call.He says it can come back whether I have the treatments or not.any advise out there.

Welcome to the Oral Cancer Foundation Paul,

Glad to hear you are doing so well after your surgery.

I don't believe there is a surgeon who can positively say he got all the cancer. If you read some of the older posts most recommend radiation and/or Chemo after the surgery. You want to make sure all the cancer cells are gone. Radiation should clean up any tiny cells that may have spread waiting to start up again. Everyone reacts differentely to the same treatment. You may not experience the bad side effects of the radiation. My advise to you is to
attack this cancer with every weapon avaiable to you the first time.

Best Wishes, Dan

Hi Paul,
and welcome to the site.

You are on the fence. Stage II NCCN practice guidelines are that radiation is "adjuvant RT" optional, depending on "adverse features", such as close margins, vascular invasion and other things.

It is a tough call to make. Tongue cancers seem to be more agressive than other types of oral cancer. Radiation is not easy and no guarantee. But I urge you to also read the posts about metastesis and recurrence and balance out your decision with that knowledge. Dan put it very well about "attack this cancer with every weapon available". It is ultimately your decision what tools in the arsenal will be used.

Paul
Welcome..
The only thing nasty on this site is cancer.. treatments are harsh.. sometimes horrible.. but the goal is the elimination of very last cell of cancer.. so ask plenty of questions and be preparded to go the 'extra mile' if that's what it takes...
sunshine..love and hugs
Helen

Hey guys thanks for the replys.I am really dreading talking to th radiologists.I hate the thoughts of loosing half my teeth,missing another 6 to 8 weeks of work and the possibility of it still comming back.From what I have been told, once you have the treatments they can not do it again.Yeah i am on the fence.

Hi Paul-

Well, my two cents worth ---having lived with this disease for the last 2 years I too would say "go for the gold" and give it everything you can the first time around. The treatment is tough but very survivable. After treatment you will have enough anxiety waiting from test result to test result without the added doubt of whether you were aggresive enough to begin with. Going for the gold now will at least take some of that anxiety away. Good luck - Kris

Paul: Welcome to the site. Sorry you're here, but if you have "it" (notice it is not capitalized), this is the best place to be. These folks are terrific. I just finished my treatments, and while my cancer was a little different than yours, the treatment options are basically the same, radiation, chemo, surgery. I took the most aggressive path I could at the start because I wanted to get to the point that if it recurred, I could console myself with the fact that there was nothing else I could have done to kill this thing and I want to win, not lose, to this butcher. Wanted to kick it in the...shins. If it does recur, I will know it is not due to my efforts, but it is in the good Lord's hands, and if His plan is for me to get it again, then that is His will. And I will accept His judgement and go on fighting. That's why he gave us free will. In your place, I went for the whole thing and would recommend you consider that as well. If it recurs, would you rather say you did everything you could, or would it be OK to say I wish I had only ... Your call.

Paul, I want to chime in too and tell you not to mess around with this awful disease, which can spring back up and bite you again. Have the radiation! And have both sides radiated because this cancer jumps from one to the other with impunity. Yes, it is tough, but it is a small price to pay for a chance to live the rest of your life. Thousands and thousands of us have gone through it, so you can too. If you are in reasonably good health otherwise, it will be very doable. Do not dread talking to the radiology oncologists -- those people saved my life. Give them a chance to save yours too! And if you are on the fence, remember that a recurrance is a million, gazillion times worse than a few weeks of radiation. And if you still are undecided. think of someone who would miss you if you are not around, and do it for them. If I sound a little crabby, I am. I am just so darned tired of people dying from this horrible disease. Hit it with everything available, and don't wait around to do it!
Joanna, now stepping down from soapbox

Hi Paul,

Welcome to our community, unfortunately dubbed the club nobody wants to join. You are getting some emotionally charged advice from people that have had many struggles and seen many friends get taken out by this dreaded disease. I am sure no matter how tough the treatment, each of us would do it again in a heartbeat. I hate to quote statistics but...80%-90% chance of getting it all versus 10%-30% if you don't.

As my otolaryngologist put it, he has seen in the past 5 years especially that with or without the neck dissection, radiation combined with chemo has shown to be the most effective weapon. I had two lymph nodes light up on the PET/CT scan and did not have the surgery. Knock on wood...8 months post treatment this week. I am still just as nervous as the day they told me what I had and I stay up all night before exams but I have had many nights to get to stay up!

I am sorry you have to go through all you have gone through and maybe even more. I don't wish any of the treatment on anybody, unless it extends their life.

When in doubt, get a second opinion from a comprehensive cancer center.

Ed

Hi Paul, Eric here... welcome, welcome to OCF -- this is a great place to be for what you are going through.

I, too, had stage II tongue cancer. They took it all out with clean margins and told me I, too, was on the border of needing radiation. I pondered putting myself through the harsh treatments, but many, many folks assured me that I needed to be ultra aggressive the first time around, that this isn't something to toy with.

So, I decided to do it. The first few weeks of my six weeks of treatments weren't too bad. I remember strutting a bit and thinking I would be the one person who sailed through radiation treatments unscathed. Haha!!

Of course that all changed around appointment 12 or so. It was rough, but you know what -- looking back, it wasn't that bad!! You'll be surprised at what the human mind and body (with lots of prayer and support) can get through!!!

A few keys of wisdom to pass on should you choose radiation (and I highly recommend that you do):

* Stay on top of your nuitrition and hydration. I let these lax at times, and that caused me some problems, especially toward the end of my treatments. I didn't use a PEG tube and made it OK, but at times I wonder if I should have...

* Don't be afraid of pain medication. I tried to play hero for awhile, boy was that stupid. Make sure you have pain med prescriptions in hand BEFORE you need them. And don't be afraid to ask your docs to increase your dosage if it's not working...

* If you are on pain meds, ask your docs about treating constipation issues. Truly, and I laugh about it now somewhat, this was the worst part of radiation for me. Imagine a grown man whimpering on the bathroom floor. That was me on two occassions. Not pretty but I could have avoided this with better care on the front end...

* Try to stay as active as possible. I actually worked through much of treatment, though my hours went way down toward the end because I needed the rest.

I'm a sports reporter/photographer, and I got credentials to cover the Fiesta Bowl in Tempe -- which was right at about four weeks of treatments for me. It wore me out some, and I'm sure I looked silly drinking my Ensure on the sidelines during halftime, but I wasn't about to let radiation keep me from that!! Set goals for yourself and that will help you stay strong.

As you can see from my signature below, I did get a recurrence, even after taking radiation. Somehow something slipped through, and a lymph node right underneath the radiation field grew a tumor (all my nodes were negative at the time of surgery and radiation). So I had a radical neck dissection last Friday.

I don't say that to scare you but to show you reality. This disease is feisty and needs to be dealt with using "an elephant gun" as my ENT says. Sometimes we need to pull that gun out a couple of times, but you'll help your chances greatly by delivering the big blows early in the process... Hope that makes sense

Feel free to email me anytime if you have questions... Keep in touch -- pulling for you and praying for you...

What part of WV are you from? My parents are WV natives -- Beckley and Oceana in Raleigh and Wyoming Counties... I was born and grew up in NC, but I still feel like I have a deep connection to Wild and Wonderful West Virginia.

Peace to you,

Eric