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Joined: Apr 2021
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rkinjo Offline OP
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Joined: Apr 2021
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Hello all! Just wanted to introduce myself. Ray Kinjo in Southern California. About 3 weeks ago I was diagnosed with tongue cancer, and last Wed. I had a partial glossectomy. I'm curious to hear about radiation, as right now I'm at the borderline area: radiate, or manage through close observation.

I was hoping people can help me understand the long term effects of radiation.

I'm 38 year old male, new dad (have a 2 yr old daughter) and breadwinner of my family.

Any suggestions and information is much appreciated!

Thank you,

Joined: Feb 2015
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Joined: Feb 2015
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Ray: When I was being advised about radiation, initially there was mention of a feeding tube and physical limitations (no work, sports etc.) which was more than I wanted. A different level with few restrictions was proposed that I went through with, so my advice is to understand the costs involved with your treatment. Also, remember that free advice is worth what you pay for it.
Also if your cancer was not from HPV, learn about the role even mild alcohol use plays in this issue. You'll fight this all your life. With very good care and great attention on your part, that should be a long time. Best of luck, Tom


SCC stage 1 Nov. '03,
SCC stage 2 (clear mrg, no rad, no chemo) RND, Feb. '15

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Hi Ray

I went thru surgery and radiation last year for stage IV SCC on my right back tongue. They also took all my lymph nodes on the right side. I chose to do radiation treatment as my oncologist said it improved my odds by 2x (40% chance of recurrence vs 20% chance). This was based on many variables but at least gives you a feel.

I was able to exercise (run, surf, bike, yoga) all the way thru treatment. Some days were harder or i was just tired but i made sure to at least go for a nice walk at least a couple times a day. Some of my side effects - burnt neck, thrush in my mouth, tooth damage, loss of taste, loss of saliva. The taste and saliva are still problems for me today but manageable. I can now eat almost everything but spicy food or alcohol. Alcohol tastes like poison!!! Hmmm, what is that telling me? I had been a light social drinker since my stupid days in HS and college. I had a couple crowns/root canals, receding gums that may mean a couple extractions which are tricky as RX weakens your jaw bones. I have to brush my teeth after everything i eat, snack, etc. I mean it. I brush about 6-7x/day. I have to do daily tongue and throat exercises as the RX tightens your muscles over time.

Everyone responds a little different. This is just my experience about a year out. For reference, I am a 53 year old otherwise very healthy and active male.

Talk it over with your oncologist. Get a second opinion if still not sure. Share all this with people you love and trust and then follow your gut. It's your body and your life. Don't let the Doctor's just tell you to do it. Make sure you have reconciled everything in your heart.

Prayers for a clear path and full recovery. I am also Southern Cal. Be happy to jump on a private email or phone call with you some time if you want to talk further.

Best
Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20

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