Hi, my name is Ilene and I've had two bouts of tongue cancer. The first was almost 15 years ago when I was 32. I ended up having two surgeries resulting in removal of 1/4 of my tongue and a modified radical neck dissection on the right side. I recovered quite well and was back teaching shortly after surgery. Since my lymph nodes were clear I didn't have radiation. Then after 13 years of nothing but a few benign sores I was again diagnosed with squamous cell of the tongue in December 2001. Two more surgeries left me with about 1/2 of my tongue and this time they removed the nodes on the left side of my neck. I had six weeks of radiation and that experience and the permanent side effects was worse than anything else I experienced. I am still recovering. I'm glad to find people I can talk with about these experiences.

Hi Ilene, My name is Eli, I am on this board to hopefully find others like my sister who are battling the side effects of radiation treatment from cancer of the tongue. You seem to be going through what she is. Approx. 2 years ago she was treated for cancer at the age of 33, not a smoker or drinker, of the tongue and they removed a portion of the tongue and several lymph nodes in her neck. She had radiation treatment afterwards. The radiation side effects appear to be worse than any other part of the treatment. Specifically the sores. All I know is she has an extremely difficult time eating and swallowing. She take pain killers and steroid treatment just started, but we don't know if that is helping yet. She had sores that came in her mouth on her tongue, eventually they went away and she was eating regular and gaining back her weight. At this moment she is having a rough time with severe soreness/sores in her throat, its been several months without it getting better. Can you tell me more about your experience and any helpful tips or treatment that you have done to alleviate the pain and discomfort of the sores? How are you feeling today after time passing? I know there is hope for both of you to get better. Please respond and be strong.

Eli (and others who are reading)
Like your sister I also was not a smoker or drinker and the doctors were totally freaked that someone so young should have tongue cancer. Doctors have told me that they are seeing more of it in people who don't fit the risk profile and so far they don't know why. I agree that the radiation was by far the worst of the treatment. I was in tremendous pain and had to be hospitalized to finish treatment and receive medication and nutrition by IV until I had a feeding tube put in. I was on fairly high doses of narcotics for several months until my mouth and throat started to heal. I don't have much trouble with mouth sores now. There is discomfort from the constant dryness - I wake up with a sore throat everyday and talking is painful - which doesn't necessarily stop me from doing it. I can eat soft foods although nothing tastes like it used to and some things taste really bad. I have some disability and ongoing discomfort and limited movement from the neck dissections and radiation. Physical therapy has helped a lot but there will also be some things that aren't as they were before. That can psychologically be the most difficult part. Some of the effects are permanent. It doesn't mean I won't have a good life anymore but some things will be different. I won't "get well" completely as friends wish for me - wanting me to be the way I was before. I still go out with friends but rarely eat much if anything because there are so few restaurant items I can handle. While I don't like this I think it makes others more uncomfortable than me. I still don't have my energy level back to what it was but that should improve as should my overall lack of physical strength from the huge weight loss and months of inactivity.
ilene

This post is in relation to more younger, non-smokers getting oral cancers. I was one of them myself. What I can tell you from many discussions with doctors around the country is there is at least anecdotal evidence that this is indeed happening, though there has been no peer reviewed study to confirm these general impressions that many doctors have. The changes a cell goes through from normal to malignant take several genetic mutations. Since all cancers result from this process, the question becomes, what can be causing this genetic damage? The most likely culprit at this time is the human papilloma virus. Two strains of it, #16 and 18, are already known to cause 95% of all cervical cancers in women. It is estimated that 40 million Americans have the HPV virus, but it is unknown how many have these two versions that cause cancers. To the best of knowledge, the other versions of this virus only cause benign things like warts. HPV is sexually transmitted. In California next year women will be tested for HPV along with their regular PAP. Finding out that you have it, doesn

Brian,

Since I was diagnosed with cervical cancer in my early 20's & treated successfully, does this mean that I may be prone to some form of oral cancer?

Susan

The prudent thing to do would be to have a HPV test at your next PAP, they can do it from the same sample for around $40.00. If you find that you are HPV 16/18 positive, in relationship to cervical cancers you are very prone to them. Since the role of HPV in oral cancers is just now emerging, what this might mean cannot be said with absolute certainty. As I said in the previous post, studies are just now underway to determine how big a role HPV is playing in the oral cancer issue. It may be years before a definitive, published paper emerges. There is no question that it is a factor, and no one has offered another explanation for all the young, non-smokers that are being diagnosed. In my own case, I believe that this is how I came to my oral cancer, being a non-smoker and having no other risk factors. I would encourage anyone who is HPV 16/18 positive to engage in oral self-examinations routinely, and have their mouth examined for the early signs of oral cancer at least annually by a professional. This last point does cause some problems. Recent studies show that those doctors who should be screening for this are not completely up to speed on what constitutes a proper oral cancer exam. Next week I will be adding a page to the web site, that describes to non-professionals, how to know if you have had a proper examination. Remember that this is only one cause of oral cancer, and it is certainly second to the other major risk factor, tobacco use.

In regards to the HPV, I had a recent PAP test as part of a presurgury checkup. It came back fine. I recall specifically asking the nurse on the phone who said the test was fine if this meant I did not have HPV. She said that you do not have HPV if your PAP tests are fine. I'm assuming that I can believe that information, but I'll make a point to discuss HPV again at my next PAP smear.
I've been wondering about other factors, like breathing cleaning agents or using nasal steriods for allergies or overdoing it using the artifical sweeteners.

PS. I forgot to mention that I was a non smoker, non drinker 40 year old at the diagnosis. I also was told that it's odd to get this for my gender and age and risk factors. I notice that a news article on this web site mentions a 60% increase in tongue cancer in the under 40 group. It angered me to read that in addition to smoking, drinking, and poor oral hygiene (I've never had a single cavity), that we can attribute the under 40 problem to marijuana use! Boy, that makes me angry! I don't know about you, but I'm not a marijuana user (or former user). I worry that as long as different groups can see this cancer as being caused by a life habit that we brought on ourselves, we'll not learn what's really going on.

You were given bad information. A negative pap has nothing to do with HPV. The histology of the PAP smear is looking for dysplastic cells (those not normal, but on their way to becoming malignant) and outright malignant cells, usually SCC just as in oral cancer. As to all the other possible causes of cancers; the list is long. Nothing that you have mentioned stands out as a definitive culprit, and you cannot live your whole life worrying about every POSSIBLE agent that may wreck havoc on your body. While everything that you have mentioned has gotten some bad press at one time or another, there is a distinct difference in bad PR and definitive proof that something causes cancer. If it did it wouldn't be on the market. Even those things which we know to be harmful, like the carcinogens in tobacco, don't affect everyone. We all know someone who has smoked his or her whole life long and didn't get cancer. Granted they may be a minority, but it goes to show that we are all unique individuals and what impacts one body doesn't hurt another. The list of potential harmful agents around us would take thousands of pages to list. Start with the pollution in the air we breath, the chemicals in the foods we eat, and so much more. To look at a singular source of malignancy and try to avoid it only works in those agents that have the most toxic effects. As to the millions of others, perhaps their acting in concert with each other finally burdens the immune system and allows malignancy, in someone susceptible.

You and I are in the minority. Lifestyle issues do cause most of the oral cancers we see. As to the marijuana issue, it isn't so much smoking pot as smoking anything. Pot, pipe tobacco, cigars, etc. all produce carcinogens as a by-product of the combustion of the tobacco. They probably just didn't want anyone to think that pot doesn