Hi, I am 3 weeks post surgery for a tumor in the right side of my tongue. The tumor was 2 cm. After removal the margins were clear of cancer. They removed 20 lymph nodes from my neck on the same side and found one 2mm tumor in one of the lymph nodes but the others were clear. Everything else was clear. The doctor is recommending 6 weeks of radiation on the mouth and both sides of the neck. I have already had one salivary gland removed (negative for cancer), and I am worried that the long-term side effects of radiation will have a significant impact on my quality of life. I am particularly concerned about the loss of taste and long-term dry mouth. I also read about damage to the carotid artery and other worrying side effects. Is it all too much?

I guess I am looking for advice from the community. I know every case is different and it's impossible to know what would have happened if you hadn't chosen radiation, but how does your decision to go through with radiation sit with you now? Do you regret doing it? Or are the side effects manageable and it's worth the extra insurance it buys you that the cancer will not return?

I am grateful for any stories you can share.

I am 48 yrs old, healthy in every other way, and I have 2 kids (12 & 14). I have a lot of life ahead of me aside from this diagnosis.

Thank you so much

Hello Mela,

I'm the OP for the discussion concerning radiations affects on the carotid artery. I am currently pursuing opinions on dealing with the stenosis present in my artery that was in the line-of-fire of the treatment radiation.

I remain very grateful for my treatment regimen and have absolutely no regrets. It was explained to me at the time that the Standard for treating my cancer was a combination of radiation & chemotherapy. Having said that, they talked to me about current research that was pointing towards removing chemo from the Standard treatment as there was concern it was "over-kill" and not absolutely necessary. After due consideration, I declined the chemo aspect of the Standard treatment. I remain comfortable with that decision.

Post-treatment, I remain determined to research the possible chronic effects of the life-saving treatment I received. I believe in nipping things in the bud as the best means of dealing with any issues that may arise. I accept this as the natural consequence of my problem & it's treatment. I plan to make the very best of the rest of my days.

I wish you the best possible luck going forward. Talk to as many people as you can, weigh the pros & cons, then make an informed decision.

Take care,
Dan

Mela

I want to add my experience. I went through a very similar process about 18 months ago. I was an otherwise quite healthy 52 year old, active, non-smoker whole life and social drinker when I got my stage 4 SCC diagnosis (right side of tongue). I chose radiation as my oncologist told me the chances of recurring (for me, every one is different, as you already noted) went from about 40% to about 20% if I did 60 Gy of IMRT treatment to mouth and neck areas.

The side effects so far have been as expected/discussed with my medical team - lots of dental work (root canals, crowns, fillings), dry mouth (significantly improved but still there), loss of flavors (most are back now except nothing spicy and no alcohol), some tightness in jaw and neck muscles and tongue. I have reset my expectations to always have some sort of dental work in my future. But, for me, reducing my odds in half was worth it then and I still feel that way (but it has only been a short period).

Trust your gut and good on you for reaching out to this space. I did not find OCF until after my radiation treatment. Tons of great info, helpful people, and support here. Happy to answer any other questions you may have as I went through similar surgery too.

Wishing you the best.

Nels