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

If yours were an HPV positive cancer I would have a very definite opinion. Those cancers respond very well to radiation, and we now have seen excellent results over a period of more than 4+ years in de escalation trials of people at half the radiation dose having complete resolution of the cancer, with few of the long-term consequences of 65 gys over six to seven weeks of treatment. But yours if you are a non smoker (please comment) with an unknown etiology, are not eligible for that.

There isn’t a scientific answer that is black and white to your question. We have seen people have surgical only solutions and do well. Others have multiple recurrences and surgeries to resolve them. The cancer keeps returning even with what appear to be clean margins. They survive all these, but it’s a reoccurring issue every few years. People that have follow up radiation do not seem to have to deal with the recurrences. But they do indeed live with significant long-term issues that arise over a protracted period of time. Some of those you mention, but there are far worse ones. They are mostly things that are livable, but there is no denying that they compromise your quality of life sometimes in the extreme. I had lots of radiation, before IMRT and its improved targeting. My life is full of difficulty and compromises after about 18 uneventful years.

The issue is often that these tongue cancers are not focal areas of cellular conversion. It’s related to something called field cancerization. The surgeon gets clean margins, but in surrounding tissues there are cells that are not cancerous but dysplastic, meaning they are changing from normal to malignant and are at some in between stage of transformation. It not surgically possible to keep cutting to try to remove all those small areas as the size of the surgical field be one very large and that has significant life impacts of its own. A larger field of removal could be grafted with muscle from somewhere else in your body, but again a more involved process, and if too large is harder to ensure you will have full movement of that part of the tongue. These are all questions to discuss with your doctors. Everything has trade offs. And I do not think there are any absolute answers. You don’t mention etiology, and that would impact your decision.

I did not have a choice about radiation. My disease was very advanced. I would in todays world even at similar doses, have had a much more confined field of radiation that was closely mapped. That might have eliminated some of my worse after effects. They are really bad but I would not assume that your experience with IMRT radiation would be the same as mine with XMRT. You might explore getting more targeted proton beam radiation which is more sparing of surrounding tissues, but it’s usually very targeted, and that’s not why they are recommending your radiation. They want to paint the surrounding areas. Please let us know what you decide and their arguments for their recommendations. I wish you good luck no matter your future treatments. B

Hi Brian,

I can't thank you enough for your response. We are gathering more information to answer your thoughtful questions and we will post them here soon. Again, thank you so much for your response. I have been shouting into canyons with no echo, so it was so comforting to get something back.

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

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 had cancer under my left jaw and in my the top node on my neck. Besides removing my jaw, they removed ever node on that side of my neck. I proceeded to have 36 radiation treatments and chemo on top of that. My cancer was extremely aggressive and even though wide margins were achieved by surgery, it was felt to increase my long term survival percentages to greatly. I asked the team the same question- “is it worth it?” - my survival rate for 5 years tripled and maybe double my 10 year survival rate. It is not easy but I want to live to see our grandchild grow up - my salivary glands do not work and my taste is minimal - I knew these things might happen but I wanted to do EVERYTHING possible to increase my long term odds of survival- best wishes to you!