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Your experiences with radiation therapy to tongue

Posted by healthydeb @healthydeb, Jun 11 4:28pm

I have had 3 surgeries on my tongue for PVL (Proliferative Verrucous Leukoplakia) which is an aggressive lesion with a high transformation to. I will see my ENT surgeon in 2 weeks to discuss next steps because a segment of cancer remains at the back of the lesion and one therapy brought up is radiation if further surgery is impracticable.
Question: what has been your experience with radiation therapy? I have read a lot of information about immediate and long term side effects.

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healthydeb | @healthydeb | Jun 15 12:56pm

I hear you and am sorry what you are going thru. I had a severe autoimmune resection to a biologic so my options may be limited. I’m also struggling to gain weight! It’s particularly unkind when your mouth is affected.

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56tburd | @56tburd | Jun 16 8:40am
In reply to @stephiejoon "Hi there. IMHO I would look for other alternatives. Radiation is destructive. I finished 6 weeks..." + (show)
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Hi there. IMHO I would look for other alternatives. Radiation is destructive. I finished 6 weeks in August 2025 foe aggressive SCC of the tongue. I now suffer with severe tongue. lymphdema and with rehab and PT it is not getting better. If I knew then what I know now I would avoid Radiation at all costs. There's gotta besolutions. Better remedies and solutions. Best of luck.

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@stephiejoon I was given the choice of radiation and chemo or have a significant portion of my tongue removed. I still had to have surgery afterward, but my tongue remained intact. My sister didn't have radiation as an option as it was her second bout with HNC, so she tried immunotherapy rather than lose her tongue. It didn't work. Until something better comes along, we are left with few options.

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stephiejoon | @stephiejoon | Jun 16 11:44am
In reply to @56tburd "@stephiejoon I was given the choice of radiation and chemo or have a significant portion of..." + (show)
Profile picture for 56tburd @56tburd

@stephiejoon I was given the choice of radiation and chemo or have a significant portion of my tongue removed. I still had to have surgery afterward, but my tongue remained intact. My sister didn't have radiation as an option as it was her second bout with HNC, so she tried immunotherapy rather than lose her tongue. It didn't work. Until something better comes along, we are left with few options.

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@56tburd Wishing you all the best for a positive outcome!

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healthydeb | @healthydeb | Jun 16 5:58pm
In reply to @56tburd "@stephiejoon I was given the choice of radiation and chemo or have a significant portion of..." + (show)
Profile picture for 56tburd @56tburd

@stephiejoon I was given the choice of radiation and chemo or have a significant portion of my tongue removed. I still had to have surgery afterward, but my tongue remained intact. My sister didn't have radiation as an option as it was her second bout with HNC, so she tried immunotherapy rather than lose her tongue. It didn't work. Until something better comes along, we are left with few options.

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@56tburd Just found out that the Tumor Board recommended surgery to remove the remaining cancer and a major flap procedure with a graft and removal of neck nodes. Now radiation sounds better than this but that option is in reserve should I need it in the future. Hopefully, this will preserve function and be a cure. One can hope.

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56tburd | @56tburd | Jun 17 7:03am
In reply to @healthydeb "@56tburd Just found out that the Tumor Board recommended surgery to remove the remaining cancer and..." + (show)
Profile picture for healthydeb @healthydeb

@56tburd Just found out that the Tumor Board recommended surgery to remove the remaining cancer and a major flap procedure with a graft and removal of neck nodes. Now radiation sounds better than this but that option is in reserve should I need it in the future. Hopefully, this will preserve function and be a cure. One can hope.

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@healthydeb I wish treatment had come further along than it has, but it has definitely improved in the past 20 years. I hope it all goes well for you.

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calenbd | @calenbd | Jun 17 3:57pm

I had HPV SCC at the base of my tongue in 2023. My treatment was 6 weeks of radiation (30 sessions) and chemo. Honestly, the side effects about half-way through and three months after really sucked, but the results and side effects long term, at least for me, were outstanding. I’m still cancer free and no real long term side effects, thank God! If you choose this route, I pray you get the same results.

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sandy8043 | @sandy8043 | Jun 17 4:43pm

I had the full treatment for tongue cancer in late 2023 into 24. Reconstruction, flap, neck dissection, chemo and radiation. Lymphedema and radiation fibrosis are still a challenge. Some days I wallow in self pity but for the most part I am grateful and amazed at how far I've come. I love this quote...
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healthydeb | @healthydeb | Jun 17 5:51pm

I am grateful that you shared your story. I hope for a good outcome.

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healthydeb | @healthydeb | Jun 17 5:52pm
In reply to @calenbd "I had HPV SCC at the base of my tongue in 2023. My treatment was 6..." + (show)
Profile picture for calenbd @calenbd

I had HPV SCC at the base of my tongue in 2023. My treatment was 6 weeks of radiation (30 sessions) and chemo. Honestly, the side effects about half-way through and three months after really sucked, but the results and side effects long term, at least for me, were outstanding. I’m still cancer free and no real long term side effects, thank God! If you choose this route, I pray you get the same results.

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@calenbd thank you, I feel inspired by your story, good luck to you!

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zenren14 | @zenren14 | Jun 18 2:11am
In reply to @healthydeb "@56tburd Just found out that the Tumor Board recommended surgery to remove the remaining cancer and..." + (show)
Profile picture for healthydeb @healthydeb

@56tburd Just found out that the Tumor Board recommended surgery to remove the remaining cancer and a major flap procedure with a graft and removal of neck nodes. Now radiation sounds better than this but that option is in reserve should I need it in the future. Hopefully, this will preserve function and be a cure. One can hope.

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@healthydeb
Somewhat relief knowing a plan is in place. Wishing you wellness in every step of your recovery.

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