Hi everyone,

I am a new member here. 38 yrs old, diagnosed with SCC of the tongue. Had surgery on Jan 20th, a "nearly total hemiglossectomy" and bilateral neck dissection. Multi-sattelite tumor, negative but closish margins, left nodes clean, two right nodes with micromets. Staged as IVa. Never smoked, very casual drinker, no second-hand smoke around, no history of cancer in the family, generally healthy.

I am speaking and eating well so far. A week from tomorrow, I am starting radiation (7 weeks) and chemo (wk 1,4, and 7, cisplatin, 100 mg or something)... I've been talking to many great and experienced doctors, both H&N surgeons and oncologists, and nobody seems to be certain whether or not I need chemo. Everyone says that I am as borderline as they come. Only one doctor (at Sloan of all places) was absolutely unequivocal in his opinion - no chemo. I decided that since chemo opinion is out there, I'd rather go for it because at least I will know that I did everything I could have. I guess I will never know whether or not I made the right decision.

I am deathly afraid of the side effects, not as much those that will go away eventually, but mainly of the irreversible ones. Everyone tells me how great I will do because I am young and healthy (well, except for that one little c-word), but everything so far has been just a tad bit worse than expected, so I am not holding my breath. I am fairly disciplined, so I will drink my fluids and rinse my mouth and do all the right things, but it seems like there is only so much I can control.

Aside from that, I am really disappointed that diagnosing me took 4 months because nobody took me seriously. Everyone I saw (my internist twice, ENT twice although he did brush biopsy and blood test and both came back negative, ER when I went with horrendous pain in my tongue) kept telling me that it can't possibly be anything scary because I don't belong to any risk groups. Rinse your mouth with saline, get a mouth guard because you are probably biting your tongue, it's probably ulcer because you have three young kids and a full-time job and just stressed or something... And then when my dentist told me to see oral surgeon ASAP, it was November and appointments took weeks to get because it was Thanksgiving... Just seems like time was going down the toilet.

But I am here and now, and really hope to weather the next two months somehow and hopefully move forward.

Thank you so much to the creators of this site and the foundation. There is so little awareness about oral cancer among the doctors who don't come to contact with it frequently enough, and so little information so that they don't take patients like me seriously enough that it makes you wonder how many lives can be saved if only people knew more.