[seth323]

I am now 31, was diagnosed stage 4b oral cancer in 2022 when I was 28 - underwent the same general surgery as parent comment to remove positive margins left after the initial biopsy of my tongue and almost all lymph nodes in the left side of my neck. I also underwent 6 weeks of radiation. I was not HPV positive and don't smoke or drink so doctors are still clueless as to why I developed cancer.

Can confirm radiation is brutal and almost indescribable. Everything tasted bitter and sulfurous for 6 months, even water. I had a feeding tube placed after not eating for 3 weeks and losing 25% of my body weight (roughly 35 pounds). I was days away from death. I would wake up every night with blood pouring out of my nose and was not able to open my jaw for almost a week. 2 years later, after many iterations of lymphedema, physical and speech therapy I am still in significant pain every day and cannot even swallow my own spit unless I am on narcotics around the clock. That in itself is a nightmare because finding a provider that will prescribe a steady supply of narcotics instead of pushing expensive procedures so they can get rich is difficult. I am routinely drug tested so I can get medications that prevent me from starving to death. It is humiliating.

I am lucky in that my speech is virtually the same as before treatment which is rare, and my taste has returned to normal. I would die of starvation without narcotics and I don't know if I will ever gain the energy and stamina to have children, and yet I still consider myself extremely well off compared to other survivors.

Please get vaccinated for HPV and lower your risk factors for oral cancer in general. It is one of the worst late stage cancers to recover from. You may be alive after the treatments but radiation will destroy your quality of life and you will likely be dependent on doctors for basic tasks for a long time, if not the rest of your existence. I don't want to think about what my life will be like if my cancer ever returns.