I was recently diagnosed, by way of a biopsy, with squamous cell cancer of the tongue. I had a CT scan (at the VA) 2 days ago and am going to meet with the doctor tomorrow. Don't really know what questions to ask or what the potential treatment might be. I hope you all can help me evaluate my options.
Thanks
Bud

Hey Bud, if I were you I would start by reading everything you can on these boards. There is a vast amount of experience and guidance from folks that have gone through the same thing as you,including myself.

Eat while you're reading. Pack on some weight, you may need it. If not, hey gravy is gravy!

Hi Bud:
Well we have several things in common, SCC and the VA. I am working with the VA in Little Rock and have been very impressed with all my dealings with them.

Stay after them to do the pathology work necessary to confirm or deny presence of HPV-16 virus. That is an important test; you actually want it to be present as it makes your treatment much easier and usually more successful than if absent.

As Tom said above, start reading the forum. But, also go back to the OCF main page and start reading all the stuff at those links. You have hundreds of pages of stuff to bone up on, and all of it is important. Right now be concentrating on diagnosis, a little later on Treatment. By then you'll be an old pro at all this stuff and know where to look when the time comes.

It's a wild ride you're beginning, with a lot of opportunity to feel down about having the big C and what you think it will do for your future. Don't let that stuff bother you. We've all been there and had to learn how to not let it get in there and rattle around to detrimental effect. You will get lots of suggestions here how to do that.

Welcome to the family brother. It's a big and very supportive group; let them help you along the way. They have a LOT of experience in this area and will make your ride go smoother.

And by the way, and especially on this Veteran's Day ...
THANK YOU FOR YOUR SERVICE.

Tony

Most likely surgery for the tongue and radiation and chemo may be the next step after that as it depends upon a lot of things you haven't told us yet.

Have a notebook and pen handy while you are educating yourself on the subject. If you're anything like I was at this point you have a million questions fighting in your head for attention. Write down all these questions while you are researching. Make sure the doctor takes the time to answer all of them in a way you can understand. Don't let them play the "we'll get to that later in your treatment" game. If you are worried about it now, get an answer now. These forums are a great resource, but they can also be very overwhelming in these early stages of dx and treatment. If you find yourself getting bothered or worked up at all, take a break. I had to take breaks from the forums for weeks at a time. Especially during the time between the dx and the surgery. That feeling of "this thing inside me is growing and getting worse, why is nothing being done NOW?" was very hard to ignore. Use the forums and the people on them for any questions. You've found a wonderful group of warriors here.

Hi there - you want to know the size and lymph node involvement - is it of your oral tongue or in your throat? If it's oral tongue (sore on, in or under your actual tongue) you should have surgery which should be followed by chemo and rads. - depending on the amount of involvement. If you are having surgery it should be accompanied by a neck dissection. Even if you have no lymphatic involvement showing on the CT chances are it may have seeded to the nodes. If it's not oral tongue cancer unless it's a massive tumor (that needs debulking) or in the tonsils chances are they will do radiation and chemo - if it's confirmed to be HPV + - that is something you want to know if possible as it helps determine treatment. Welcome and it sucks but you will get through it,

Welcome to OCF! We will help you get thru everything.

You have found the best place to get info and learn about your disease and how its treated. Educate yourself so you know what to expect and how to advocate for yourself. There is so much to do to prepare for treatments.

Best thing you can do is to be treated at a comprehensive cancer center (CCC). At a CCC they will use a team based approach, all the specialist get together to give their treatment plan so everyone is on the same page. At the very least go to one for a second opinion. Very likely your treatment will be surgery with radiation and/or chemo. Just remember whatever specialist you are talking to (when not at a CCC) will always recommend their specialty (surgeons always recommend surgery, RO will always say you need rads, etc). Take your time to read and absorb info from OCF so you are an informed patient and a strong advocate for yourself.

Check out the main OCF pages too. There you will find all the info you are asking about. There are sections for treatment, radiation, etc. Of course we are here to help you along.

Right now you need to focus on your intake. You should be eating everything you like and not worry about gaining weight as you will lose some during treatments. You should get a hearing test, full bloodwork including thyroid and testosterone levels. Line up helpers. Nobody gets thru this alone so anyone who offers to help, write down their name and contact info. Tell them when the time comes you will call on them. Call the American Cancer Society, ask for a driver to take you to rads, and either $300 towards travel expenses or in the form of a pharmacy voucher (its ok to use for co-pays).

Two important things to remember thru all of this are everybody is different and will respond in their own unique way and the only thing you can control is the daily intake. Every single day you needs a minimum of 2500 calories and 48 oz of water.... NO SKIMPING! If you skimps one day and think its ok that you can make it up the next, you are wrong and will quickly fall into a cycle which can lead to dehydration and malnutrition. On chemo days and the few days afterwards push to take in extra water to flush the poison from the kidneys.

When treatment begins, If given cisplatin chemo, pay very close attention to your hearing. If you notice even the slightest change inform the doc immediately. Cisplatin (very common chemo for OC patients) is known to cause high frequency hearing loss which is permanent.

Those are just a few things to start with. We will be here to help you get thru everything. Lean on us and we will support you.

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Bud,

Welcome and thanks for your service. Being a military guy you have been through rough times before and survived so you will make it through this. I can't give much advice because I am just at the beginning of my journey but make sure you are happy with your doctors and treatment. Reading the posts on this site will help. Good luck.