Alright gang! Met with a team of specialists and here is the treatment plan. Partial glossectomy (hopefully no flaps), selection node dissection, and removal of part of the thyroid. I will have a feeding tube in the hospital, but will not at home.

So what should I expect. They do not know how deep the cancer is in my tongue, so there is that big question in the air, but they did mention several times yesterday that it appears to have a lot of depth. What is recovery like? Am I allowed to talk? I am a teacher, how long before I can/should return to work? What foods will be my friend? Thanks friends. You all are GREAT! So excited to have a plan in place.

Surgery is set for next Thursday, April 4th.

Oh, they do not think that I will need chemo/rad. But they said they will know more after they look at what the cancer. They said if the cancer appears to be agressive, and highly involved then they may think about doing radiation.

Also, I have a two year old. So I am worried about how this will effect me being mommy. Please help, I don't know how to prepare for this unknown adventure.

Las, your questions are great! I think you can find alot of this right on the main OCF pages, or by reading thru the posts.

Think about your support system and anyone who has offered to help you. Write down their name and contact info and tell them when the time comes you will let them know what they can do to help you. I would definitely line up play dates for your toddler. Other moms could be a great resource. Ask a few moms if they wouldnt mind each taking one day per week and making that "their day" that they are your helper. Even if all they do is spend an hour at your home making your child lunch and putting them down for a nap, that can be a HUGE help for when you arent feeling well. Make a list of chores that friends and relatives can select to help like making dinner, doing a load of laundry, vacuuming, taking the little one for a walk or to the play ground, picking up meds from the pharmacy, etc. Maybe look into one of the free housecleaning services for cancer patients. They arent available everywhere, so its hit or miss but it would be helpful.

Your recovery could be anywhere from 1 week - 4 weeks before you are feeling somewhat ok. You may be on some strong pain meds which will make you sleepy. Take the meds, being in pain is NOT helpful to any patient. Usually if a patient is to do radiation that will be about 6 weeks after the glossectomy.

Here is a list of easy to eat foods. It was originally made with radiation patients in mind but it may work for you after surgery too. The foods have a smoother texture and are not spicy which could be easier for you to eat.

Easy to Eat Foods


I always say its best to hope for the best but to prepare for the worst. Do your best to stay busy to help prepare for the surgery and keep your mind busy so you dont worry too much.

Good luck!!!

I forgot to mention your return to work probably wouldnt be before 6 weeks. Has your treatment team given you a speech pathologist to work with you after the surgery? You may need help with speech clarity and pronouncing some words clearly depending upon how much tissue is removed. Its really hard to predict how your recovery will be as its all up to how involved the surgery is. If your doctors can give you prescriptions to pick up now that would be a big help.

Good luck!!!

Hi there, I think your recovery will depend on how much they take from your tongue. With no flap it may be a little shorter recovery time. Surgery is not bad despite how it sounds. You'll be numb from the neck dissection, and swollen and may have drains, but it will be relatively painless because of the dissection. You'll need physio on your shoulder as they cut the muscles - healing will take a few weeks -by week three I was speaking and eating ok. Your tongue may be sore for a bit but will heal. I looked god awful but felt okay - my drains came out day two, I stopped the pain meds that day too as they made me loopy and I wasn't in much pain. I was home by day 10 and by day 17 I was in Mexico eating soft food from the buffet. I had a flap, and stitches in my wrist but I was okay. Try not to worry - you'll come through okay .

As you can see from my signature, they took a little over half of my tongue with a forearm flap, and I had a bilateral neck dissection with removal of nodes.

I had a trach tube for 1 week in hospital, so no speaking, eating etc. (had an NG tube for feeding). Once removed, I begged to be let out, and was released a couple of days later and you couldn't shut me up. I talked whenever I could to get used to the new tongue. I was off all pain meds by day 4 (had some allergy issues), while still in hospital.

There's major swelling on the tongue, so I sounded like the godfather for a few weeks, but I made my first court appearance on October 30. I worked part-time for about 2 weeks, then was back full time. It will depend how comfortable you are about your speech. I wanted to get back, as I felt like a sick person sitting at home.

Look on the internet for tongue exercises. I found that helpful in getting it moving right. I also spent a lot of time practicing words that were more difficult to help my speech, and I sang as well.

Good luck Tuesday!

Thanks. I am such a planner and I feel that I am not able to plan for this unknown future. Obviously there are stressors like healing, money, returning to work, running out of sick leave, getting help, taking care of my family, etc. Just so much to take on. And friends keep telling me to take it one day at a time, but I have to have a plan in place. I believe in a failure to plan is a plan for failure.

I have a goal of returning to work on 4/22. My procedure is 4/4. Is this a realistic goal? Just so nervous.

Lori,

I would check with your doctors about when you can return to work and they probably won't know until after the surgery. If they need to remove more tissue during surgery and do a flap, your recovery will probably take longer. Also a factor is the thyroid removal and neck dissection. I needed a doctor's OK (written note) saying when I could return to work.

Your tongue will be swollen after surgery, so eating will definitely be a challenge. Look for easy foods that don't require much chewing (check out list Christine mentioned). Exercising your tongue will definitely help regain mobility and speech but check with your doctor as to when you should start. Many patients are referred to a speech therapist.

You said you have a 2 year old - do you have someone to help care for him/her? Two year olds are very active and won't understand much about your surgery, so minimal info is better. You will probably be tired and in some pain for the first few weeks after surgery, so take all offers of help (shopping, cleaning, food prep, laundry, child care, etc). How long is difficult to answer at this point -- it depends what you have done during surgery, and how you react to the surgery. Everyone's experience is different.

Your #1 priority after surgery is your recovery. Don't overdo things. If you feel tired, rest. If you are in pain, take your pain meds. Get others to help you - don't try to be super women during this time.

I was extremely anxious before my first surgery as I didn't know what to expect and I hadn't found the OCF forum until months later. Use the forum as a resource for information and support. Unlike your family and friends, we've been through what you are facing and are here to help.

Wishing you the best!

Well, I had the surgery. It turned out the tumor was much smaller than they expected, so they did not do the partial neck dissection (they saw nothing on CTs). Now I am just trying to figure out how to use my new tongue. They did not remove much, but I sound ridiculous when I talk and can't eat anything but soup because I can't feel most of my tongue. Already getting frustrated because otherwise I feel good. Pain is manageable, but just feel really special when I try to talk or eat, I can't figure out where the food is. UGH!

But on the whole good news. Makes me a little nervous that they didn't do the neck dissection because they said it would lower my chances of the cancer coming back.

Congrats on the successful surgery! Getting a speech pathologist involved right away will help you learn how to manage your new tongue.

Best wishes with your recovery!!!

Great news, Lori!

At your age you should bounce back quickly.

My tumor was small, and removed by excisional biopsy. I had no additional treatment (surgery, neck dissection, etc.). That was over four and one-half years ago! I saw two top ENTs who both recommended the "wait, watch and see" approach. This involves frequent appointments with an ENT, and constant surveillance of changes in my mouth. So far so good!

The fear of not having more extensive treatment will subside over time, though it will never go away.

Wishing you the best!

I am doing better with speech everyday. I can't get over how gross my tongue looks. They warned me there would be white, but gross. I am definitely getting sick of soup, but everything else gets stuck under my tongue, on top of my tongue and I have to use my finger to fish it out. Last night I was chewing on my tongue and didn't realize it.

I hope to go back to work next week (maybe Thursday), and I am going off the prescription pain meds because they don't allow me to drive. I have post-op appointment on Tuesday AM and hoping to get clearance to go back to work. Though I am a Spanish teacher, so I am not sure how my school is going to feel about me teaching Spanish when I cannot speak English properly (do I technically have a disability now?).

I have a feeling I will also be like you Catherine, watch, wait and see. But I am moving to Tampa in July and hoping to move all my medical follow-ups etc to Moffit. I first have to get the new insurance all settled (great timing).

Lori,

Please take the time you need to heal. I was a teacher, too, and I know the pressure you feel not to miss school. Your recovery is primary. Physically and mentally you have already been through a lot. If you can, put yourself first right now.

You ask, "Do I technically have a disability now?"
My answer is "No, there is no such thing as a "technical disability".

I think you're a bit down right now because you have been blindsided with a situation that no one would have ever anticipated or predicted. When you start to feel better, you will have a better outlook. Try to focus on the positives in your life (I'm really not trying to sound preachy).

I hope your move to Tampa goes well. Moffit has an excellent reputation and if your follow-ups are there that should give you some peace of mind that you are working with the best possible team. I traveled 3 and 1/2 hours, one way, to Johns Hopkins for my follow-up appointments for two years, as well as seeing an ENT in Richmond.

And please don't worry about the insurance aspects (easy for me to say,no?), there are always work-arounds for things.

My best to you!

Catherine, I appreciate all the advice from you BTDT folks. It does not seem preachy at all, I am worried about getting back to my students and normal routine. I am out of sick leave, so that is also adding to the pressure of wanting to get back to work. I know there are so many positives in my life (besides the most important ones of my beautiful family). But also finding this cancer early and having doctors that took it seriously. They didn't write me off saying I had no risk factors.

My husband got a new job that is moving us down to Tampa. I know it will all work out, but the planner in me wants to be overly prepared. I am just anxious to get back to normal life. But beyond grateful every single day!