How about asking what services the hospital offers, like therapist for cancer patients, speech pathologist, nutritionist, etc. There should be a team of these professionals to work with you to help you with your recovery. You can also ask about having a visiting nurse, they can be a huge help. Since you dont have insurance ask about financial aid programs the hospital offers. Many have programs available but they dont offer them to everyone, you have to ask.

Good luck!!!

Dear FlyFree,
Yes, there really IS life after tongue surgery-although, I won't lie to you, dealing with not being able to be clearly understood (or being ignored altogether) is probably the hardest thing I've had to suffer throughout this whole toboggan-ride. (not to mention drooling all over myself!!!):-p... Of course, this is just MY experience, of MY feelings being on MY sleeve ;-) and of course, your experience will be different.
I've found over and again that my PERCEPTION and feelings ABOUT what happens is generally as (if not more) important than what actually DOES happen. I'm trying to keep my mind on what I CAN change and do, and let the rest take care of itself. Maybe a bit Pollyanna-ish, but it's worked this far!
BTW, your questions are GREAT! Don't forget to write 'em down; and for your 5,003 other questions that inevitably pop up as you're driving home, come back to this site as often as need be, do searches, start new topics, and make some terrific new friends. You are truly welcome here and you'll find a wealth of info and experience.
Prayin' for you!
Gordon

Hi Lisa, I just posted my ordeal in this same forum. Best of luck in everything going forward. Seems like there are a lot of positive outcomes here on these forums, which only helps so much when it's you living it. your Leukoplakia is a similar condition to my Oral Lichen Planus, which is frustrating enough without compounding it with C!

Thank you Gordon, I like being a Pollyanna and find it is the only way to learn the lesson that this brings.
Best of Luck,
Lisa

Hi Flymama,

I read your post and you are the first person I've noticed so far that seems to have had a similar experience to me, as far as it starting with dental issues. I was just diagnosed and don't have my surgery until 1/23, so I really hope yours goes well and that you feel up to posting afterwards!

I have been very perplexed about the dental connection and no one so far can really explain it to me. Like you, I had a rough tooth that was causing some irritation on my left side of the tongue, near my back molar. Then, after the tooth was pulled, I thought it would get better. After being on antibiotics too long, I developed oral thrush, so I had a bit white spot there and pain all over the inside of my mouth. I had no tongue lesions or pain at all before my tooth cracked a bit and started rubbing against my tongue. After the thrush cleared, my oral surgeon advised me that the lesion and ongoing pain was NOT oral thrush - that cleared and then he did a tongue biopsy.

That was when he determined it was SCC. To this day, I still don't understand how a scrape from a rough tooth turned into cancer. If this lesion appeared out of nowhere, I would have understood and it would have made more sense. But, I still don't get how this cancerous lesion developed in the exact same place as where my tooth was rubbing my tongue - and it happened in like a two week period.

Sorry if I seem frustrated, it's just that no doctor has been able to explain the connection between the dental work and suddenly having cancer that same month. I just kept thinking it was an extreme coincidence until I read your post. So, you are not alone. If you ever get any answers or theories on how a rough tooth led to squamous cell carcinoma, I would love to hear about that.

Good luck with your surgery, and please keep posting here...it's been very helpful for me so I hope you remain on the boards. :-)

I've said this a few times and there are a few other people who've had similar situations (one had long term irritation from braces and discovered only post removal of the braces that she actually had scc). Mine was similar as it started out with a broken tooth irritating an area - I had built up a small callous under my tongue suppose to protect against the tooth - an oral surgeon removed it (the callous was biopsied and came back as thickened skin). After it seemed okay for a while as I had the tooth capped. Then long term the irritation began in earnest I had a biopsy but at the time my tongue had no sore - it was only irritated - however palpation of the area would have shown a small lump inside my tongue - I assumed this was scar tissue from where they'd removed the callous a few years previously. The ENT said nothing biopsy came back irritated and inflamed skin. I had the tooth filed, allergy tests etc.. No result. Jump ahead 2 years - i had the tooth beside the other capped and the situation became worse the ENT biopsied it - scc.
Some drs believe there is an association between long term irritation and scc - some don't. The truth is long term irritation causes cell change (this is what happens in the tissue of the lungs, and oral mucosa when exposed to chemicals from cigarette smoking - from which we often get cancer), so I think the same holds true for other types of irritation - whether it be mechanical or chemical. Take care.

Does anyone think being exposed to smoke from doing a wood burning stove could cause irritation in cells similar to cigarette smoking. My husband has fired a wood burning stove for over 30 years 2-3 times a day throughout our cold winters in MN. It not only heats our house but also a huge building next store so there is a lot of wood thrown in. (I know from times I have tried to help out but usually end up burning the ends of my hair.) If there is any chance it could of caused his rare cancer since he has never smoked or drank? I sure would hate to keep exposing him to an irritate.

Can second hand cigarette smoke cause cancer? I think the principle is similar.
No one can say for sure if breathing in the smoke from a wood burning stove long term can cause cancer - but if the wood you're burning has been related with pesticides etc... Then it's possible - it's also an irritant - period - is it super smokey? I don't even stand near open outdoor fires anymore - last Time I was someone's house and they got the fire going I spent maybe 2 hours breathing that stuff in and was sick for two days...
Smoke inhalation anyone?
Now I am sure there are many people who deal with stuff like that daily - and have no problem with it - but some people are sensitive to it - so it's an individual thing. My mom was a 3.5 pack a day smoker - she died of lung cancer over 10 years ago - at age 59. Her partner also smoked the same amount - he lived another 9 years - battled colon cancer and won but died from pneumonia - everyone is different.
Hugs.

It's multiple causes, and complex, but agree with Cheryld about constant irritation being a factor, and also the immune system breakdown to fight cell divison, heridary genes is being looked at, and 2nd hand smoke, as mentioned is suspect, nutrients, as well as certain vocations being exposed to carcinogens. I don't know if they really know what the cause of cancer is.