I believe it depends on how much radiation (how many grays) you are getting. For example, when my husband got his first treatment, it was 70 grays given over 35 days, so it’s 2 grays each day. Then when he needed some more radiation later, he was given 20 grays over 5 days, that’s 4 grays a day. I asked the RO and that’s what he told me. The second dose would actually be stronger.

I’m not saying you will have a lot of side effects, I just think it’s good for you to know.

Relate to you 100 percent. I was diagnosed with cancer of tongue yesterday and had a ct scan and getting a pet scan on Thursday then back to dr next Tuesday for results. Praying like you that it had not gone anywhere else. Surgery end of next week. My prayers🙏

Hello everyone,

I was a member of this board 6 years ago when I was diagnosed with oral tongue cancer for the first time at the age of 25 - (32 now) squamous cell carcinoma, no risk factors and hpv negative. I thought I had updated since then but I guess I never did. I may have reached out to people individually as I was lucky enough to connect with some truly amazing people on this forum, many of whom helped me in so many ways. I've always been grateful for and to the individuals in this community and don't think I would have been able to maneuver some of the early days without its amazing support.

So, for that exact reason, and because it's 1:30 AM and I feel helpless waiting around for the world to wake up so I can deal with this, I find myself here venting to people who may understand, feeling perhaps truly panicked for one of the first times since 2014. I've had some other concerns before, obviously, as I'm sure many have when something new and unknown appears, but this one... this new spot on my tongue seems different. It seems a little more malicious. I know better than to assume anything before a doctor can see me but in the meantime, I'm finding myself back here feeling all different levels of deja vu praying that I am worrying for nothing. To top it off, for some reason the fact that my doctor left the University Hospital and sent us all letters just last month has me even more panicked. I love his team, I am grateful that the hospital has an amazing staff... but this is one of those moments I wish I could ask the doctor who operated on me last time. The worry center of my brain has clearly won at this point because it's saying, you made it 5 years, you're in year 6... remission... just in time for your doctor to leave and this spot to appear...

I realize I may sound ridiculous. But I feel slightly calmer now that I've written the words out. Thanks for letting me vent.

-Kat

Sadly, my husband passed about a year ago. The aspiration issues, weight loss, etc from treatment became too much.
Anita

I'm not sure how to do this. I was diagnosed with squamous cell carcinoma on my tongue Oct 23, had partial glossectomy and neck dissection Nov. 10th. Margins were clear, no lymph node involvement, .8mm cancer (I don't know what you call it). My risk factor, and why my surgeon recommends radiation, is peri-neural invasion on a small nerve. Radiation has it's own risk factors and I haven't been able to make a decision about it.
Has anyone had radiation and still had a recurrence? Has anyone not had radiation and not had a recurrence? Any experience with this sort of scenario would be helpful.
Thank you for you time and caring.

Yes I take 3200 milligrams of gabapentin daily but it does not help much, I also take 15 mill of hydrocodon that still does not keep the pain away. I have met with many doctors and no one seems to be able to find an answer. Thanks for sharing your issue, best of luck.

I use ACT, not a gel but a tablet which works for hours.

Good dental work. My husband did the same but still ended up needing a root canal.
Are you using Prevident toothpaste? Also watch that dry
mouth.
Oral cancer is brutal in its side effects.

Glad to hear you have stayed on top of it. Happy Holidays SSL!

A lot of this is sounding familiar to me at 7 years out. What became of all this? Thanks in advance