After months of sinus infections and strep, I finally saw an ENT. We did tests, then this week a CT w dye, and found a mass. Results today from Biopsy says squamous cell carcinoma, it's at the base of my tongue.
I live in Texas, trying for appt at MD Anderson.
Have yet to see oncologist, waiting on referral from ENT.
My brain doesn't seem to wanna wrap around this!
I would appreciate some "what will happen next" info.
And is Proton as good as Tomotherapy? Is it the same?
ENT Doc recommended first chemo then radiation. No surgery due to location. They didn't see anything else on the CT scan... But he basically told me that this was beyond his level of expertise and there was nothing else he could do.
Thanks in advance... I'm floundering here..
I hope I've posted in the right spot. I really appreciate finding this forum and being able to connect.

Welcome, Rebecca. You will soon get replies from people who know more about base of tongue cancer but I want to commiserate. I know how hard it is to be cast adrift after the initial diagnosis. Once you see the oncologist or a multi-disciplinary panel at MD Anderson you will feel better. You can then focus on treatment and cure.

You're going to have to brace yourself for weeks of treatment and several months to recover. But you're not alone. Most of us have been through radiation with many people having chemo too. We can encourage you through it.

I hope you get your appointment soon. Meanwhile it would be useful to search for BOT cancer and its treatment on OCF's main website.

Wishing you well.

Hello Rebecca, I'm so sorry that you too need to be here. That said, this is a wonderful site for information and support. A diagnosis of cancer just completely throws your life into disarray doesn't it. It does take time to wrap your head around it . But, you will get through this.
I think your plan to get an opinion from MD Anderson is a good one. This is a Comprehensive Cancer Centre, a CCC, and you will get expert and cutting edge treatment there. You should then be seen by a whole " Tumour Board" , this comprises Head and Neck surgeons, chemo oncologists, radiation oncologists, dental oncologists, Speech language therapists, dieticians etc. This gives a whole of team approach to your individual case. A treatment plan that is best for you is decided upon by the whole team.
BOT - base of tongue - cancer is usually treated with chemotherapy and radiation. Make sure that your biopsy was tested for the HPV virus. About 70% of BOT cancers are caused by this virus. The good news is that they are more responsive to the chemo and radiation than nonHPV. There is a survival advantage to being HPV positive. Who knew there'd be good news?
Christine and others will come along shortly and give you heaps more advice on things like nutrition and dental care.
Keep posting , we will be here for you.
Tammy

Rebecca, sorry you had to join, but welcome. Just a few things to add to the already good advise given.

You will find everything will be happening all at once, at lightening speed, if you didn't already find that out. Often, it's hurry up and wait, and many find relief/ calm when treatment begins, as I always did.

Much of your treatments will be based on the stage, and TNM grading system, Tumor, Nodes and Metastases, and other diagnostic prognostics, physical exam, your health, contributing co- factors, and your decision, but basically it's Surgery, Radiation, Chemoradiation or a combination of such that will be used.

Both Proton therapy and Tomo Therapy are both external beam radiation. Protons are a superior form of radiation using atomic energized particles, elections. It's usually used in certain head and neck cancers, as well as approved by insurance, in the recurrence setting for cancer that wasn't treated successfully with other radiation, except I believe in a clinical trials, which MD Anderson has. They also have a newer form of PT called, Intensity Modulated Proton Therapy or IMPT, so the time is shorter time, and multiple locations can be used. It's expensive, at least 2x that of IMRT, like Tomo Therapy, but Medicare paid for mine, over $7,000 a day.

Tomography is another form of IMRT using photons.

Another consideration is TORS, Transoral Robotic Surgery, and TOLMS, Transoral Laser Microsurgery, used in select patients with BOT/Tonsil cancer these days.

One thing you can do while waiting for your treatments is to educate yourself, and begin exercising now, and if possible, through treatment, which has shown to be beneficial, in addition too, adequate nutrition and hydration. I'm not saying to run a marathon, and lose the fight in the gym, but basic exercising, and it's not a good time to start any fad or restrictive diets, and It's actually better to have a higher BMI ti begin with than not to get you through, although gorging with excess nutrients feeds cancer.

Here is an OCF link regarding radiation, and links to treatment side effects, and other useful resources.

http://www.oralcancerfoundation.org/treatment/radiation.php

Good luck, and I hope this helps.

Welcome to OCF! You found the best place for info and support. We will help you get thru this

Im so glad you are going to MD Anderson! Thats one of the countrys top treatment centers. Its been scientifically proven that patients treated at CCCs fare much better than those treated at other facilities. For some its not an option but for those where it is, thats the best route to go.

From my understanding IMRT is what most of us here have had. There are a very few who have had other types of rads. This is another reason why a second opinion is so important. You do not want to be on the receiving end of antiquated methods.

You will have a flurry of appointments and seem to always be running here and there. Once you decide on your treatment plan and start, everything will settle into a routine.

If you havent already made a dental appointment, do so right away. If going to MD Anderson, Im pretty sure they have a dental oncology section. Ask about this, its important to see a dentist who is familiar with treating OC patients (surprisingly many arent). You will want to have flouride trays made and any teeth that are questionable pulled at least a couple weeks prior to starting rads.

Start rounding up your friends and family. Write down names and contact info for anyone offering their assistance. Tell them when the time comes you will let them know how they can help. Sadly, not all your current contacts will hang around til the end of your treatments. Some people arent able to be there when someone close is facing their own mortality. Ive lost some very close friends and worse relatives who ran for the hills when I got sick. Hopefully this wont happen to you.

Best wishes!

Thanks so much!

Does anyone know how fast this grows? At biopsy last week it was 2x4 cm. since surgery I've had pressure in my chest, and more difficulty swallowing, with lots of mucous. Is this normal? My ENT a has told me almost nothing, and I've yet to see an Oncologist...
Feeling light headed, but that could be anxiety?

Everyone is different and will vary slightly from other patients. Even patients with the exact same type of tumor in the same location can have very different outcomes and experiences.

Sounds to me like you are worrying alot. Its only normal to be concerned. Just remember, stress is not good for anyone and can make symptoms appear much worse than they actually are.

Have you scheduled an appointment with an oncologist yet? Hopefully you will get into MD Anderson and things will start to move along quickly. Ive been fortunate to have met the top guys at MD Anderson at the OCF Houston walk last year. To me, it sounds like they really know their stuff there.

If you get in at MD Anderson they will set you up with a surgeon, a medical oncologist, and a dental appointment. They try to do as many in a day as possible especially if you are out of town. It won't feel like it is moving fast enough, because it isn't possible to move as quickly as you want it to move, but I think on average at MD Anderson you have your surgery (if you are having surgery and I don't know the specifics of your case) within 3 weeks of the plan being agreed upon.

That few weeks will feel like a lifetime, but there is a lot to get done in that time period.

For some people proton therapy is an option but IMRT is more common. You can certainly ask about proton therapy and it is an option at MD Anderson, but depending on the type/size/spread of your tumor and quite frankly some insurance issues it might not be the best option in your case.

Ask your RO (radiation oncologist) about radiation options.

Thank you for the information. I am much relieved after hearing from several of the members with supportive information. This is a beginning walk for me, and I am one to research and question in order to wrap my mind around what's going on.... I don't get to be in control with this, do I? LOL!
However, I am more at peace. I have begun to accept this unwanted visitor in my life. For a couple of days, I felt like I had a constant Invisible Companion who dominated and demanded my thoughts and attention... But today, I'm better.
I want to thank all of you who have responded.