Hello
I am new to this forum and new to this cancer. I previously had microcarcinoma in thyroid and had a thryoidectomy in 2010 which left me with a paralyzed cord.

I developed an ulcer under the front right side of my tongue in June. Went to the doctor and she said it was stress and would take a while to heal. I have Crohn's disease so ulcers aren't uncommon. In October it still was there and I was having ear pain as well. My dentist sent me for a biopsy and it confirmed that I had squamous cell cancer.
I have established myself with a ccc and saw a head and neck oncologist yesterday. I have an appointment with a surgeon on Friday but feeling overwhelmed.

My CT/PET scan showed a spot on larynx and the cat scan showed some enlarged lymph nodes but they didn't show on PET scan. The doctor thinks that the larynx is ok that it just might be a mistake on scan since I have a paralyzed vocal cord so I use that side to talk.

I don't know what questions to ask the surgeon. Any questions that you feel are important to ask? I also wondered how long I might be in the hospital for a partial glossectomy? I work three jobs and have a child in high school and one in college, so being off work for very long is not an option.

Any advice would be greatly appreciated. So glad I found this site.

Partial glossectomy - 10-14 days depending on the hospital some people get sent home earlier depending on hospital protocol. I would ask if they will be doing a neck dissection (they should) this cancer has a tendency to seed to the nodes. How many they are removing - usually it's between 30- and 60 - I would ask if they will be putting in a trache. (Usually they do) where the graft is coming from often it's the wrist but each surgeon has their favorite locals. Bring something to write with you may not be able to speak for a few days. You may have issues post op with your arm and shoulder if they are doing a neck dissection - they cut muscles that are needed for this movement. It sounds like a daunting surgery but it's not too bad. Welcome and best of luck.

Lisa42

Welcome to OCF. You have found a good place here on this forum for help. You say your being treated at a CCC well that is the best place you can be . Ask if a HPV test was done when the biopsy was taken. On my mothers first biopsy she wasn't tested for HPV and we were left wondering what the cancer was linked to, My mother had a second biopsy with a recurrence so we were able to find out that she didn't have HPV. It makes a difference on how this type of cancer responds to treatment.

I remember asking the surgeon in detail what he was going to remove. What Stage the cancer was. How long was the surgery going to take, If my mom was going to need a trach due to the swelling.

I'm sure other members of the forum will respond with some very good questions you should ask.

You say your working 3 jobs, well you will need time to recover so this may be a problem. I'm sure after surgery you will also need some type of treatments. The side affects from treatments could surely stop you from working for a while.

Don't stress yourself out that's not good at all. After your visit with the surgeon you will have a clearer picture of what you are facing. It may not be to bad at all.

Feel free to ask any questions you may have and someone will answer.

Good Luck
Heidi

Welcome to OCF Lisa.

Sorry you had to find us and so sorry your doctor messed up and did not diagnose it earlier. At least now, you know and plan and get on with treatment and recovery and back to a full life.

Once you get a full diagnosis and treatment plan things will become clearer. Just as a heads up, most cancer treatment does force folks to take some time off work. If you have a very small stage 1 diagnosis with surgery and no chemo or radiation you may be able to slide through without missing work.

Just be patient until the picture becomes clearer then you can start doing more specific planning about work and child care and such.

Good luck
Don

Thanks so much for all of your replies. They did a p16 stain and it was negative. I wrote down all the things to ask, really nervous about having a Trach. . The ulcer is towards the front right side of my tongue, so I was hoping that would help me not have one. I will update all of you after my appointment Friday afternoon. Glad to know I have the support of this forum, I am sure I will need it in the coming weeks.

If you are going to have a trach, ask for a possey muir valve trach so if you are able to speak you will be able to with this type of trach. Try to have someone with you during your hospital stay. Its important to have someone you trust be your advocate and help you get thru this. If possible round up a few people to take shifts staying with you.

I understand you have alot going on and many responsibilities. Make sure that anyone who offers their assistance you write down their name and number. Tell them when the time comes you will contact them. There will be a million little things that can help make this easier. Dont be shy, people really do want to help so let them pitch in. If it were someone you knew, Im sure you would want to help them.

As far as work goes, I know its hard not to be concerned but your health must take precedence. I would be surprised if you stayed longer than 4-7 days in the hospital. Recovery can be a few weeks. Your speech and eating will be affected so it could be over a month, maybe even 2 months before you are ready to return to your jobs. You may need physical and speech therapy to help you learn how to speak clearly and maneuver your new tongue. Im sorry this is probably not what you want to hear but I must be honest. I do understand, I was a single mother of 2 teenagers when I went thru my first round of OC and I needed this type of info so I could prepare.

Until your procedure try to eat all your favorite foods. Your eating will be compromised for a while so its best to go into this having no regrets. Hang in there, we are in your corner.

how much of your tongue they are removing and whether you are having your nodes removed will determine the trache placement. Ideally if they are reconstructing a portion of your tongue they want it immobile and not interfered with during the first few days this is the reason for the trache. What christine suggested was the second trache they put in for me on day three - it made life way more bearable. The told me they wanted the trache in because of swelling and healing. They put the closed trache that allows you only to breath through it - not your mouth and nose - just for a few post op days - same reason as above - they want as little interference with your mouth as possible. I think by day 5-6 my trache was gone entirely. you will be okay.