Hi everyone, I'm so glad to have found this community. My husband Dan was just diagnosed with squamous cell carcinoma on his tongue last Friday through a biopsy performed by our local ear, nose, and throat doctor. He's had a sore on his tongue that has gotten worse over the past couple of months, but it lines up with some crooked teeth on that side of his mouth so we didn't think anything of it. On Tuesday 9/15, his tongue became so swollen that he could not swallow very well and I had to call him an ambulance. He followed up with an ENT who did a tongue biopsy and called us with the terrible news Friday afternoon. We are hoping he'll be seen for a PET scan tomorrow. Any advice is much appreciated as we start this long journey. Thanks so much.

Welcome to OCF! You have found the very best resource for info and support. We will help you both get thru the treatments and recovery phases.

I suggest you read posts on the forum and also read the main OCF site. Educating yourself about your husbands illness makes for a strong advocate. Just remember everyones different and may experience things slightly different than others, even those with the same exact diagnosis.

For right now your husband should focus on eating all his favorite foods. His sense of taste and ability to swallow may make eating difficult for a while so eat now. Dont worry about gaining weight, he should enjoy eating everything and have dessert too. Many OC patients undergo substantial weight loss during their treatments so adding a few extra pounds is a good idea.

Your husband will have many appointments prior to any treatments starting. If having radiation treatments, the following is very important. Make sure to have a full blood workup done including testosterone and thyroid levels. Its important to have a baseline for these numbers before any treatments start. Your husband should get a thorough dental check up and take care of any questionable teeth, get flouride trays made.

Since your husband does not yet have a treatment plan, I suggest a second opinion. If at all possible at a Comprehensive Cancer Center (CCC) in your area. Thats a treatment facility where a team based approach is used so all the specialists are on the same page. Hopefully a CCC is an option for your husbands treatment. When looking at treatment plans, remember surgeons always say surgery is the way to go, same for radiologists and medical oncologists say chemo is necessary. Also remember once its been removed you cant put it back to its original functionality (even with skin graphs). This is why a second opinion is so important!

List of CCCs


Anyone you talk to about your husbands condition who offers their assistance, tell them when the time comes you will let them know how they can help. Make sure you make a list of everyone with their contact info. This could come in handy down the road.

As a caregiver you have your hands full. Make sure to take some time to be good to yourself. We are here to support not just your husband but you too. We understand just how hard it is for both of you. Stick with us and we will help you both thru everything.


NCI Cancer Centers

Main OCF site -- Understanding Oral Cancer (diagnosis, treatments, etc.)

So glad you found this site. Christine's note to you is spot on. Re-read it and even print it out. The people here are more fantastic than you will ever meet anywhere. The information, suggestions and insight here all come from people who have been touched by this journey. We all truly care ! Please keep us posted and do not hesitate with any questions you have. Sure chances are you will find someone or many who have dealt with it. Remember to take care of yourself too as you are walking this walk together.

Thanks everyone, first appointment is tomorrow...

I would agree with the previous post regarding the second opinion unless the PET scan and ENT / Oncology Team already located within a CCC affiliated with a hospital with a demonstrated success treating Head and Neck Cancers.

However, the PET scan results may also result in involvement of additional specialists as well.

If it can be at all helped, this is not something to be treated casually by well meaning, but inexperienced doctors / surgeons.

It may sound a little harsh, but you and your husband have to hit back effectively and HARD.

Good Luck

Unfortunately we left his first appointment with more questions than answers...in addition to the moderately differentiated squamous cell carcinoma on the right anterior of the tongue, they suspect that he has submucousal disease on the floor of the mouth on that side...I didn't quite understand if that means that they think he has cancer in the floor of the mouth too?? They also suspect lymph node involvement on the right side of his neck. They are recommending a partial glossectomy on the right side of the tongue (didn't give a percentage yet but partial means 50% or less correct?) with reconstruction tissue from his left arm, and neck dissection to remove lymph nodes. I don't know if any treatment is being recommended for the submuscousal disease? They will decide about radiation and chemo based on test results of what they remove during surgery. We don't have stage, TNM, or grade yet. They want him to do a scan as the next step in diagnosis and treatment planning.

Here's the part that scares me to death...my husband already suffers from Cerebral Palsy and Optic Atrophy. He relies heavily on oral communication. I am concerned about his ability to recover from the partial glossectomy. Sure, the cancer may be gone, but at what price?

A partial glossectomy does not constitute 50% resection. However, as the tongue is excised, additional material may have to be resected as well to achieve "clear boundaries". So a partial could become a hemi during surgery.

Was the neck dissection radical or partial?

If the lymph nodes are involved the cancer has metastasized from the original site and I believe that places your husband at Stage 3. (Don't get caught up in the numbers.)

The PET scan will show if any there has been any additional tumor growth outside of the head and neck areas and also better / more accurately locate the known tumors.

Regarding your questions about communication after reconstructive surgery - Your husbands other health issues combined with the course of action for the oral cancer, (resection / reconstruction / possible radiation and or chemo), will have a definite adverse impact on oral communication. Ipads or cell smart phones are an excellent way to communicate non-verbally.

We are hoping that he can regain as much communication function as possible meanwhile we are going to make flash cards for him to use right after surgery and he is going to look into getting a computerized communication board. He knows he'll need speech therapy too.

Regarding the neck dissection, I don't know yet if it will be partial vs. full...

Theres a text to speech app for ipads. Its called Speak It. Im not sure if it works on all tablets. I had a good friend who used this everyday. She could even make phone calls with it.

I find it annoying that some doctors do not tell the patients the stage/grade of their cancer. That happened to us. When I asked, the oncologist rattled it off very quickly that I barely had time to write it down. I suppose they feel that it is "irrelevant" since the treatment plan is likely to be the same irrespective of stage. It is irritating, nevertheless.