I've just spent 4mnths with various hospital introduced infections such as staff n golden staff....and it just wouldnt heal, spreading & disfiguring as it went. Eventually I rejected medical care & saw a dermatologist, who took me off all the medications and I healed within 2 weeks.....but i just wasnt feeling any better...pushed myself along as best I could & three weeks ago had an ulcer n toothache so saw my dentist just incase it was a simple tooth infection making me feel so ill. Now, I should mention I live in a regional country zone, so usual wait time for any 'specialist' (including Dental) is 6-12 weeks. Luckily (haha) because I suffer from medically triggered PTSD from prior cancer treatments etc in my youth, he saw me immediately apon my call before I could change my mind :-) I generally only go once every year at best. He was suspicious of an ulcer (I chew the inside of my mouth & tongue in my sleep, side effect of PTSD) & referred me to a Surgeon. He diagnosed on sight a malignant tumour squamous cell, and booked me for surgery within 36hrs....or he would not be available again for 2-3 weeks to do it, which would be the difference between life & death apparently. He would not refer me to Sydney as they would take time too whats the point Im ready to go now. My 'family' & support networks are unusual, fragmented over large distances and I have 1 daughter who's only sense of real family is me, who lives in a city 500Kms away. He would not allow me to fly over to see her, or prepare and ensure a network of support or practical plans with friends & loved ones. I objected to this and at that point was threatened with being put into 'mental care'(another side effect of admiting you have PTSD, they can 'lock' u up) and be forced to comply with his wishes, he would call my daughter & tell her. Obviously this was to be avoided in my view, so I complied, was only able to call my daughter regarding issue, or what little i knew of it, and had my tongue mostly removed left side following day. I now can't talk to be understood at all, its devastated my entire social & financial world, (I was a speaker/marketing & management/media)it also allowed dreadful miscommunications & misunderstandings, of which some relationships can never be repaired as a result, or even maybe should be, but could have been avoided perhaps with a pre conversation & plan.
Prior to surgery & after the tumour was cut out I was refused a HPV test, or antibiotics by Surgeon who offered no explanation as to why, even though I had cervical cancer at 19yrs of age due to HPV, Im 45 now, and had recently had resistant staff. I did smoke 10 cigarettes a day for 10-12 years, that obviously over an open chewed tongue wound was probably the cause, but still...shouldn't I have the HPV test? He didn't say if it was cleanly removed or any margin etc after surgery, or even specific care instructions for that matter, just indicated stage 3, chemo n radio next, we have a 5 year relationship now. I feel we are so incompatible in styles he actually made me much more ill emotionally & mentally, even though I should feel grateful he cut it out? I'm glad its out....but why do I feel so violated now :-( so sad, so alone in some ways...like no-one really understands, and now I can't talk, no-one does. I had a Pet Scan because of these feelings, and it came back 100% clear. The subsequent 'team' planning meeting let me know the tumour had a clear margin around it, size (2.5mlx1.5mlx.5ml deep left lower edge of tongue, & stage 2 not 3!!! However because this cancer type recurs? I would have chemo (said no, isnt it gone??) and radiotherapy (indicated ok...but I dk? What should I do? Its so unhealthy!) I gave up smoking 6mnths ago when I moved to remote location for a new relationship, away from family & friends,I've never really drank much, I live an active fit lifestyle prior, was attractive, obviously had PTSD but other than in medical situations was generally a confident capable & outgoing girl. I want a HPV test n if its there can they kill it please, but regardless of what I do does that mean nothing in the statistical survival race? Is it really worth radio? Has anyone not done Radio n survived? I wish I'd found this site sooner (or even been given the time!)& had the courage to stand up for myself, now I've lost so much of my life for the want of a little preparation! and I can't even say that cause that means I'm ungrateful :-(.

Welcome to OCF! This forum is full of members who have gone thru radiation and survived, myself included. Every patient is different and will respond in their own way to treatments. Some breeze right thru while others will struggle. Nutrition will play a huge role in how easily you get thru it. Daily you will need a minimum of 2500 calories and 48 oz of water. No skimping and thinking you can make it up the next day, it never happens and playing catch up doesnt work.

If I were you I would educate myself as much as possible by reading the forum and main OCF pages. Some of the info you related is not how patients here in the US are treated. Im sorry you clash with your doctor, that does not make things easy at all. They could be the very best doc in the world but their personality makes it hard for you to see it.

Dont worry yourself over statistics. Either you make it or you wont. Sorry to be blunt but I dont put much stock in the odds as I should not be here after going thru oral cancer 3 times. Please continue to be a non-smoker. You do NOT want to tempt fate and have a recurrence. Seek out a speech pathologist to help you regain your ability to speak clearly. They really can do wonders!!!! Anyone who offers their help to you, write down their name and number and let them know when the time comes you will let them know what you need. Dont be proud, if someone offers to help they really do mean it so take them up on it.

We have several members from Australia. Im sure some will chime in soon.

Best wishes!!!

Hi there... I had a very similar tumor - while the way your dr. Went about treatment wasn't even remotely kind or right from a moral stand point, what he did was right in terms of insisting on immediate surgery - when I found out about my tumor (almost exactly the same size as yours) I wanted my surgery ASAP. That said he may very well have saved your life. This cancer can be very aggressive, and time is always of the essence - you should have been allowed the choice of getting your stuff together and sorted out, but realistically speaking when your life is on the line why wait?

Re the HPV test, what your dr. Should have explained (seems he's lacking in this department to say the least) is that most oral cancer (tongue, gum, cheek, etc) is not HPV related. Usually tonsil and base of tongue (down your throat) is. So it's highly unlikely, despite the fact you had HPV when your were younger, that ts is the cause. There are many different forms of HPV but only two actually can cause oral cancer.

Rads and chemo? Why? I know it's a valid question...I'm not sure if your dr. Did a neck dissection... He should have - but even if your scans come back clear there's a very much the possibility that there is microscopic cancer hiding in your nodes or elsewhere - chemo and rads is the best chance you have of stopping this in its tracks. My dr. said to me post op - "in my opinion you're cured... But just to be on the safe side I'm recommending you for chemo and radiation" he removed 40 lymph nodes from my neck with one being positive for cancer.
Based on the depth of your tumor I would suspect perineural involvement, this is indicative of the need for further treatment - because cancer tends to move along the path of least resistance - And nerve pathways offer little resistance. S that's probably why he is pushing. A clean scan is great but scans don't pick up microscopic cancer. Also a lot of drs make the mistake of removing the tumor and then send the patient home saying youre cured only to discover there was some hiding inthe nodes, it has spread, and now they're chasing it. This ver thing happened to my dear friend Liza - who was also from Australia - your district actually - she passed away the day Whitney Houston died, but she fought long and hard. Drs are sometimes not nearly aggressive enough with this cancer. Perhaps your dr. Is being cautious and rightly so.
Personally I had almost half of my tongue removed and yes speech was hard at first, but it does come back once you gain more control over your new tongue. (missskate - a member here - has had her entire tongue removed and is doing fantastically several years out) Chemo and rads will be a big step backwards but it's usually for the best. And eventually you do recover. I would suggest that if it doesn't cause a delay In treatment get another ENT - but at this point whether you like him or not is moot as you will soon be in the hands of a medical oncologist and radiation oncologist. I personally am not a fan of my rads guy - bedside manner 0 - but he is great at what he does so I live with him, and use my ENT and GP when I really need someone to talk me down of the ledge (usually if something odd pops up) I only see my rads guy every 6 mos at this point. My ENT is my main contact but they tag team me, so I see someone every 3 mos.

I'm 14 mos past radiation and I can speak almost perfectly - there are days my tongue doesn't want to cooperate but eventually it calms down.

As for stats - ignore them - stage 2 is curable but so are 3 and 4 - people diagnosed at stage 1 have passed away, and some at stage 4 have survived - there are many factors - health, dr skill, treatment, aggressiveness of the cancer etc... As someone here is fond of saying your chances of survival are either 100 % or 0...
Hugs to you - I know this must have been very traumatic but you will get through it. Please dont be afraid to ask questions of your dr. You should be well informed. Take care and welcome.

As far as the radiation and chemo goes - I did them both, and I am 6 mos post-treatment and feel almost 100% back to normal. My speech is not perfect, but I don't think the radiation had anything to do with it; I had over half my tongue removed after all. Radiation was hell, but I think if I wouldn't have done it and it comes back later, I would hate to know that I could have done soemthing to prevent it when I had the chance. I figured I would be as agressive with the treatment as possible,that way if it ever comes back I can't blame myself. I was the most scared about the chemo, which turned out to be the easiest part of the entire experience. They most likely will give you a low-dose of chemo, so you will probably not lose much hair and I only got sick a couple of times. Good luck! I hope this helps some with your decision