OSCC of the tongue, heading into chemoradiotherapy...

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itschautime
itschautime CSN Member Posts: 1 *
in Head and Neck Cancer #1

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*

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