Started off with tongue lesion 4 months ago, got it biopsied a few months later (don’t know how I got this- I’m pretty healthy, non-smoker, rare drinker). Newly diagnosed SCC- lateral back of tongue on one side. Had head CT scan. Meeting with oral surgeon in a few days to hear results and go over the plan (I think she even mentioned reconstructive surgery before the biopsy even!). Wish I had someone to go with me to help me take it all in!

Hello...and welcome.
Yes...you are about to embark on a journey none of us chose to take...
Mine was hard...having no one to help me through the treatments....especially the side-effects.....other than the companionship of my adoring old cat.
R.I.P..precious little friend....😪
During, and after treatments...l amazed myself that l had the strength to cope....
It is surprising what you can do when you have no other choice..
That old adage. "Do...or die"..is apt at times like this..
During those weeks of grueling treatments..( H& N stage 4) l read somewhere that there was a women you could pay to come to you and give you cuddles....she actually did this for a living..
Goes without saying l could have used a few dozen back then..!!!
My son used to say l had the constitution of a Gladiator...l guess he was right about me after all. ....l. just needed to get cancer to realise it..
I am 7 years in remission..so there is always hope ..

Good luck to you...and please come back to let us know how you are getting along..

Thanks for the reply. You sound very brave and strong- happy you’ve had 7 years in remission!! Yes, it’s scary to think about going this alone. I’m usually a pretty brave, independent gal, but this is very scary stuff. Just wish I had someone with me tomorrow when I meet with oral Surgeon to discuss results of scan and what the plan is moving forward. Wish I had some tips for asking all the right and important questions to the Surgeon tomorrow- the Oral Surgeon seems to be the one heading up this whole thing, but it would be nice to meet some other Dr.’s also at the University Hospital, to get a multi- disciplinary approach, but not sure yet if she’ll just “Consult” with them herself.

Hello Laurac welcome to our support group,you have come to right place. You will find lot of helpful information read as much as you can under treatment forum that helped me a lot and ask any questions you have Goodluck.

Your comment "but it would be nice to meet some other Dr.’s also at the University Hospital" is right on the money. I believe that being treated by people who specialize in oral cancer is the best thing you can do. See if there is a CCC in your area.
If you have to travel to one, it is often possible to have follow-up care done locally. Let us know what you find and this group will do all we can to help you. TLC

Hello Laurac, sorry to hear your biopsy results. I had a similar SCC tumor on the left side toward the back of the tongue, I also am a non-smoker, healthy, non drinker (not idea how I got it); I'm not sure what oral surgeons can do or not do but I went directly to an Oncologist and ENT surgical team that put together a treatment plan . You might already be set up that way but you didn't mention anybody else but the oral surgeon, I went to a Dept. of Otolaryngology (Head and Neck Surgery); they specialize in removing cancerous oral tumors and are trained in robotics if needed. With mine located toward the back of the tongue they couldn't even do robotics so they had to split my jaw open to get to the tumor. It wasn't pretty but the healing part and scars are getting harder to see . Mine was done Aug 17 this year, and yes I had the forearm reconstruction to rebuild the tongue. I'm still very early in my treatment, I'm at # 19 out 33 radiation and # 4 out of 6 on chemo . Its been tough but manageable . I don't pray much but this time I have been, pretty much every day. It helps keep my spirits in check and I am hoping someday it will pass. The more you read on this forum the better prepared mentally you'll be on what to expect. There is some great information from others that can help you start your journey.

Hi Laura,

First off welcome to this amazing group. I am new to this as well but have already found it to be great for extra support. I am so sorry you are going through this, it’s scary and filled with so many emotions. Not to compare but yours sounds very similar to mine..I had gotten diagnosed in 2019 with stage one, then it came back in 2020 and just last week had my third surgery for a new lesion that popped up thankfully pre cancer but still requiring surgery and was causing me pain. I had just hit my 2.5 year marker at the end of September so this time around has definitely been a mixed bag of emotions! Happy to chat and listen anytime! I’m new to this site but if you want to exchange emails we can! The best advice I can give you is to listen to your body and be your own advocate!! Here to listen anytime!! You got this girl!

Take Care,

Jamie