OSCC of the tongue, heading into chemoradiotherapy...

itschautime

Hi. My name is Gary Chau. I am a 40 y/o male diagnosed with OSCC of the tongue back in May 2025. My story begins almost a half a year ago after I bit the left side of my tongue. After a day or two it healed up like most tongue bites do, however, in the following weeks it had formed into what I thought was a canker sore. Fast forward a few months (I know I'm stupid for not acting sooner, trust me I'm beating myself up more and more knowing that at the very least I will lose quality of life and at worst, I'll be dead) I am in between jobs and just remembered that I have medical options through the VA as I'm a veteran.

From April to July 2025, I go through the following:

1. Biopsy
2. Carcinoma-in-situ diagnosis
3. Partial left side glossectomy (pathology -7mm depth of invasion, moderately diff, clear margins)
4. Selective neck dissection of level 1-3 on the left neck (pathology reveals single node, 3mm, no high risk features
5. Radiation process begins with the idea of treating microscopic/occult disease.
6. PET scan (reveals no distant metastases but a new spot in the neck
7. July 21, 2025, my ENT did an ultrasound and discovered 2nd tumor in level 4 lymph node region (addition of chemo recommended after consult with radiation oncologist)
8. July 22, 2025, video call with radiation oncologist, hopefully to discuss new plan with tentative treatment start sometime next week.
9. Currently T2N2bM0 OSSC (lateral tongue primary site)

I guess up until now I've been in a mix of shock, denial, sadness, frustration, etc. Nothing special I'm sure. Since this process began I've done my best to ask questions and do research to get a better understanding of my situation, to try and understand and give myself a % of survival and its been demoralizing to say the least. My mother has inflammatory breast cancer and is receiving long term targeted treatment after finishing main chemo course and has been disease free for a year, so I thought I understood that the only guarantees with cancer/cancer treatment are the side effects.

Making treatment decisions when neither testing or treatment promises results has been crushing and with the recent findings I am both relieved (with no distant metastases for now…) and filled with dread (with the discovery of second tumor further down in the lymph system). It's been daunting knowing that I'm about to go through this process knowing the only sure things are long term side effects of unknown severity. Reading through research papers trying to find parameters that fits my situation has been hard.

I apologize for all the doom and gloom, woe is me attitude. My doctors have done a great job thus far and I know my case is neither special nor unique. It's just so unexpected and with my personality, the whole process of gathering info and maintaining any semblance of control has been vey frustrating.

This was a spur the moment kind of thing so I know I'm all over the place. I look forward to hearing from people with similar experiences and would appreciate any input/thoughts. I welcome any questions regarding anything I may have omitted. I will continue to browse this board. Thank you for reading.

Sidenote: Just more complaining but does anyone else find (x) year OS from studies to be super frustrating. I supposed that they aren't necessarily produced to give patients any kind of promises but its been difficult to mentally determine my odds given that the numbers don't look great anyway and not knowing what certain patients died of….*sigh*

LWT16

Hello brother, I just came across your post and your path is different and unique. Just as mine was both times. Im not gonna sugar coat it, it’s difficult and it does make you angry, sad, shocked and all those feelings are valid. Keep positive as hard as it is. Having visitors will help a lot. You’re doing it right asking questions and hold them accountable. If you don’t understand something ask until you do. If they’re going to do something ask why and how could that affect me. You got this!

wbcgaruss

Hi Garry, just stopping by to say hi after I saw LTW16 notice of a new action.

Reading your story, I can't really say you have anything extremely unusual about your case but if there is and I am missing it please let me know.

Whatever new plan they come up with, you have to be sure all the cancer that is there is found, and it needs to be a plan that eliminates it this time. A one-shot deal is the best, but you don't want to retreat in the H&N area any more than you have to.

Garry, just move forward on this and make up your mind that you are going to beat this. You need to foster a positive attitude and forge ahead.

I would say most properly treated H&N cancers these days are a win; they can defeat the cancer. What happens to some folks is the cancer comes back.

It is not exactly known why but can happen.

So take heart, be strong, move forward, do you have confidence in your doctors?

I had H&N cancer 3 times.

You can't let it get you down.

Each cancer you beat and go on living.

You can't always go by survival percentages much; everyone's case is unique.

One thing especially that I did was I always myself prayed a lot, and prayed to God to help me through each day, each radiation, each whatever, one day at a time, and he brought me through.

Many people say Prayer is Powerful.

So lastly stay away from negative thought and stay positive, stay busy also, less time to have your mind dwell where it should not.

Check out the video below of a man who had a concept of how he handled his cancer situation…

Biggest Emotional Challenge Of Hearing You Have Cancer

https://www.youtube.com/watch?v=pz50YQ4N2fU

I would also recommend you check out the Superthread at the top of the head and neck home page there is loads of information in there with links and you will find it helpful.

Our Motto on here is NEGU (Never Ever Give Up)

So, Wishing You The Best

Take Care, God Bless

Russ

And also if you like you can private message me for extra support and there are some things that can't be posted in the open forum.

itschautime

Thanks for taking the time to read my rant. I'm as positive as I usually am, its just when my mind wanders, I feel really stupid that I did this to myself.

In any case, I am going to start my 4th week of radiation + chemo (cisplatin 40ml/mg2). All taste is gone, non painful mucositis has started, thick saliva if any at all. I have chemo on Wednesdays so Thursday-Sunday are the worst. Slight tinnitus has developed. Going to talk to doctor about alternatives or a break from cisplatin as I do not know if I can live with extreme tinnitus. Should be done with treatment on Sept 12th.