Hello I just found out I have squamous cells carcinoma. It's on my tongue. Next week I go in for surgery. They will remove about 2 cm of tissue. Plus a patch in my neck to replace the tissue in my tongue. Removal of my wisdom teeth and lymph nodes on the left side of my neck. I will have a trachea for about 5 days after surgery. I had a ft of my chest also yesterday to look for more cancer. No results yet. Pretty scared at this point. I'm in law enforcement, married with 3 children. Talking to them about it had to be the hardest thing I've ever had to do. Any news or info would be a great help. My wife has MS and she is a trooper. She doesn't let it get her down and I strive to be like her.

Hi Moona, welcome to OCF! Im so sorry you have been diagnosed with SCC. We will be here to help both you and your wife get thru this.

Im glad you have a great support system. Make sure you write down contact info for anyone who offers their assistance. Let them know that even though you may not need anything right now, but down the road you may need some help. There are a million small things that friends or extended family can do to make this go easier on you and your immediate family.

The best advice I can give you is to focus on what is within your control, your intake and pain management. Hopefully you will be one of the lucky ones who bounces right after their surgery. Just in case ask your doc to write orders for 2 different prescription pain meds so you can switch off and on and not have to lie there in pain waiting for the clock to tell you its ok to get another dose of meds.

You probably wont be able to talk so take along a dry erase board, cell phone or laptop to type and others can read it. If possible try to have someone stay with you for your entire hospital stay to help run interference between you and the countless hospital staff that parade thru your room 24/7. When unable to speak its not easy to manage the intrusions when most will expect you to talk to them.

Have you gotten a second opinion? Just asking since surgeons always recommend surgery, radiation docs say rads is the way to go, etc. Once its out there is no putting it back. Of course thats what you want with cancer but you also want the least amount of collateral damage possible.

Plan for the worst and hope for the best. We are here to lean on. Best wishes!!!

Thank you for all the advice.

Welcome to OCF! Best place to get real answers and information about oral cancer. Good luck on the surgery. Many here have had surgery and can offer suggestions with getting past the side effects. Don

Greetings. I'm new here but not new to the issues. I hope things go as smooth as they possibly can for you. Please, no matter what may be going on around you, rest. Keep your pain in check. Request two types of pain medication so you can moderate pain symptoms better. Be your own advocate. Unfortunately you have to do that. To me, that meant seeking answers and even questions on my own when I was beginning to feel like just a number in the system. Peruse this site as many threads will have answers/avenues you to explore and learn from. Another thing this site has is a LOT of comfort and support. Best wishes from North Carolina. You can message me at any time. I am at your service. Peace...

Welcome moona11. You have found an exceptional community to help you through this. Re: the fear. Everyone deals with it differently. What lies ahead can also strengthen you and your faith; it did for me. I wrote down my fears and shared them with someone I trust and with my higher power. Writing the fears down helped me face them, pray about them and turn them over which in turn gave me the energy to take care of the medical challenges one appointment, one procedure, one treatment, one day at a time. I read ChristineB's post with respect. There are people here with amazing insight. Share here what you have going on; I think there will be both psychological and practical benefits for you by so doing. Let me know if there are any specific questions.
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RogerP
SCC BOT with bilateral lymph node tumors - Stage IV
Dx 7/10/14
Biopsy shows HPV marker
Non-smoker, non-drinker
Came to MD Anderson a CCC on 7/24/14
PET did not show metastasis 8/2/14
Began induction chemo 8/10/14 Carboplatin, Paclitaxel and Cetuximab
Completed induction chemo 9/22/14
Completed chemo and proton radiation 11/13/14
Follow up checkups 1/15, 5/15, 8/15 12/15 Cancer free
Otherwise healthy 68 year old male from La Selva Beach, CA

Hello Moona

I saw Christine asked if you had received a second opinion. I went to two locations, both well respected locations in my area. One Doctor, a surgeon, insisted I have the surgery.

A tumor board at another location insisted Radiation treatment is all I needed. (not to make light of just radiation) They explained why this was the case in detail to me, I have base of tongue cancer that has not impacted the movement of my tongue. I share this because it looks like you are scheduled for your surgery on February 11th. I don't know if this is an HPV cancer or a smoking related cancer. I am told studies show HPV related cancers respond very well to radiation. I am not an expert on the topic other than I went through the process and receiving treatment now.

Hi Moona,

Welcome to OCF and very sorry you need to be here.

I was diagnosed in 2005 with SCC on my lateral tongue - the oral/mobile part of the tongue. Where is your cancer located - is it in the "oral" part or is it in your "base" of tongue (part of tongue down your throat)? The HPV virus is turning into a leading cause of oral cancer in the throat area (base of tongue, tonsils) and does respond better to radiation and chemo alone. If your cancer is on the mobile part of your tongue, surgery is probably the best option. They may recommend radiation and chemo depending on the results of the surgery.

I had 4 surgeries on my tongue over the years. The first 2 were done at 2 different local hospitals. The last 2 were done at Johns Hopkins in Baltimore (one of the best hospitals in the USA for this type of cancer). At Hopkins they routinely do "frozen sections" during surgery (a type of biopsy) to make sure they "get it all" during surgery - IMO this is critical. This was not done at the local hospitals and both times I had cancer in the margins which complicated the whole process and cause me additional surgery and radiation.

I learned the hard way that where you are treated is very important - you want a doctor/hospital that treats a lot of oral cancer. Over the years I saw 4 different ENT/surgeons, 2 RO, at 5 different hospitals - the recommend treatment was often very different and the quality of treatment also varied greatly.

If life had a "do-over" button, I would have gone to Hopkins from the beginning. Also, I did not find the OCF forum or website until about 6 months after my first surgery. The wealth of information and support you will find here is the best!

Wishing you the best!

I'm sorry for getting back late. Been really busy with work and and Doctors appointments.