Mine was okay.. for example in the morning when I awoke it would feel okay... but as the day went on it became more aggravated. Talking and eating and contact with certain acidic foods really brought on the pain. But that also has a lot to do with the fact that it was growing inside the skin. So you have a contained area, and it's burrowing into the muscle of your tongue. It was actually almost a relief after the first biopsy because it was frozen, and then the pain was there but less pronounced. Then it healed but still remained painful. The larger the tumor the more painful as it becomes more invasive. If what you have at this point is superficial - then likely it's only painful to touch. Some oral cancer is not painful at all. I think it depends on where it is located - (the tongue seems to be worse in the pain department likely because it is very vascular/enervated/and muscular, and moves a lot.)
My final biopsy - never healed because cancer doesn't heal. They can remove most of it so you will get something that simulates healing, but if there is even a little bit of questionable material left - then the problem has the potential to return.

Do I think that removal of leukoplakia/dysplasia etc... can push it into the cancer zone?

Yes. I think this depends a great deal on the surgeon. If they are going to remove it then it should be treated like a cancer - take a big enough chunk that you get clear margins and nothing insidious is left. Then hopefully it will heal (at this point you minimize the open wound's exposure to acidic foods and keep the area clean (rinsing and brushing after meals) . My actual tumor (and as you know it was cancerous) was 2.4 cm (just under an inch) by 1.4 deep (half an inch). It hit muscle - they removed a 3rd of my tongue.

I would also be inclined to change my diet. I know that sounds weird... but maybe move to a more alkaline diet... acidic bothers the area. Minimize sugars. I also noticed when I was going through it that live probiotics helped a bit with the inflammation.

Drs. simply don't know what causes it. I got bounced around dx wise - they said leukoplakia, lichen planus (which can also mimic an allergy to the amalgam used in some caps). Whatever it is I feel there is a connection to chronic irritation of the area (drs are split on this) I can tell you that people who smoke end up with long term irritation to the lungs - this initiates cell change - which can eventually turn into cancer - this is the same for oral cancer. So even if it's not from smoking - irritation can be caused by many things - there is still that potential for cell change and damage. So to me this is a very possible link.

(sorry for the biology 101 lesson)

As for idiot number 2 - he was an ass with NO COMPASSION. And I knew if I were to get a cancer DX - being that I had NOT precursors for this disease - I would be seeing someone better. In fact - I refused to be referred back to him. A friend who works for the head dr. at my local hospital asked the top ENT there who he would send his daughter to if she were me. He gave us the name of the top ENT/Surgical oncologist in Toronto - I had myself referred to him and that put me in the number 1 cancer hospital in Canada - and one of the top 5 in the world.

We all like to think that our drs have our best interest at heart - and to be honest some do. Some are amazing. However, they see thousands of patients, and while you are their priority that ten minutes you are sitting in front of them, NO ONE will look out for you and your interests the way a family member or you yourself will.

hugs.


Last edited by Cheryld; 01-16-2014 09:05 AM.

Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan