Hi there,

Are there any other members who have had tongue cancer early on in their life?

I had cancer and had most of the surgery when I was 29 and celebrated my 30th birhtday just before having a week of brachytherapy (not a good present!). I feel dismayed to have such a potentially serious health issue at this stage.

I did think I might have a slightly higher risk of cancer than people my age my mother died of cancer (different type) in her early sixties, but I thought it would come later rather than sooner.

It would be great to hear from someone in their 20s or 30s who has had similar tongue cancer experiences to see how they coped.

Also, I came accross a study carried out recently in Ireland which noted an increase in the number of young non smoking women with tongue cancer, and I am interested in why this happens. My doctor had no idea.

Eilish

I was 32 when diagnosed and had all my treatments at that age.

I had no risk factors: Never smoked, dipped, used anything with tobacco, don't drink alcohol. They even tested for HPV and it was negative. Only thing they said that has a remote chance of causing my cancer was that I had adult braces and one of the rubber band hooks but my tongue a few times close to the spot I developed cancer. A repetative injury can sometimes lead to cancer but they thought it was highly unlikely that was the cause and of course could not prove it.

Jim

Interesting, I had adult braces too and one cancer specialist made some comments to the effect that the original ulcer may have been provoked by rubbing from a particular tooth which was out of line. I was also tested for HPV but it was negative.

You are alright now?

Eilish

Just past 4 years all clear and everything looks normal. Waiting for the fifth to be all clear this December

Jim

Eilish,

I was 39 when I was diagnosed. I'm a non-smoker and social drinker, and because my doctors considered me not to be at risk for oral cancer, they delayed much too long in dealing with it, even though I repeatedly asked why the lesion wouldn't go away. I've never known for sure what caused the cancer -- back when I had it, HPV wasn't known to be a factor, so I wasn't tested for it (although my cervical exams have never indicated the presence of HPV). I do know that the site of the tumor was a spot on my tongue that was frequently irritated by a sharp tooth. From what I've read over the years, I think several studies have discounted the notion that chronic irritation can contribute to it, but I'm still not convinced.

In any event, that was almost 18 years ago. Thankfully, my medical team pushed for aggressive treatment, and so far it has been a success.

I'm glad to hear you're recovering well at this point. Please keep us posted on how you're doing.

Cathy

Wow. I'm *really* not convinced about the irritation thing not being a factor now, hearing these other stories. I was diagnosed when I was 46 but the spot on my tongue that turned into cancer had been chronically irritated by a sharp tooth as well. This worries me since I actually have spots in my mouth now that are being irritated by teeth but my dentist can't get back to the tooth to smooth it because of my trismus. Yikes.

I did not have tongue cancer......my lesion was on the gums of my upper jaw and spread to the hard palate.....but I, too, had adult braces and am prone to aphthous ulcers and injure easily. I am not convinced that there is nothing to the "repeated irritation" theory of causation. I smoked 37 years ago....never drank enough to count...have NO cancer in my family.....tested neg. for HPV.

I have a young woman friend who had tongue cancer in her mid-20-s, while she was in med. school. She had surgery, and they worried about her speech and her salivation from radiation. She is just fine now...is a practicing ob-gyn dr. and the mother of three young children.

Eilish, I've heard the incidence is growing in younger people and there have been several posters in their 20's or early 30's on this forum. Jack is not a youngster, he was 55 when diagnosed, but his tumor was positive for the HPV 16 virus and he's a non smoker too.

If you do a search on this forum you will find a lot of information on this viral connection. For us it answered the why question. Perhaps this is something you could look into.

It's very unnerving to be diagnosed with such a serious illness at a young age. This is not what you expect to be dealing with and frankly it seems more unfair than for those of us that have had those extra years. Unfortunately, cancer is an equal opportunity illness and HNC is on the rise.

There isn't a good reason on why some people get to deal with things and some do not - at any age. It just happens and it can make us stronger or bitter - our choice. In the end there are no guarantees in life, and we need to make the most of every day we have.

I hope that the HBO treatments are helping and that you're going to be done with this cancer for good. Where are those stupid leprechauns when you really need them?

Regards JoAnne

Redser,

I'm not a youngster, but I'll add my 2 cents.

I was taught in dental school many, many years ago that constant irritation can cause cellular changes that can lead to cancer. I have warned my patients about this over the years.

After developing SCC on the side of my tongue and having no risk factors, I decided to find some research that showed a relationship. I have had no success in this search. I've spoken to many people in the field and there is no conclusive evidence.

However, I strongly believe that mine developed as the result of a habit I developed of rubbing my tongue on a crowned tooth. Pretty stupid for someone that should know better. With that being said and needing to have a reason, I am convinced that chronic irritation can do this.

Jerry

Redser, sorry, I am not a youngster either, diagnosed at age 44 with SCC on the left side of my tongue....I had a tooth that always rubbed my tongue right where the sore eventually came, now was the tumor already in the tongue and it caused the rubbing against the tooth? I don't know, I had the tooth filed down, was prescribed several antibiotics, crowned, etc....when the sore did not go away after many, many months of wasted time, I was sent to my oral surgeon, he took one look and knew exactly what it was.
However, I am coming up on my 5th year since diagnosis (May 10th) for which I am grateful, sorry I lost my point, it had been mentioned to me that I did not fit the normal profile for tongue cancer but no one has ever said the tooth caused it, but I wonder? I mean the constant irritation and all, I don't know, just thought I would chime in....Carol

I was diagnosed last May at the age of 32. I do not fit the "normal" profile either, but my doctor said that their is a huge rise in our age group with no apparent risk factors. Just in the time that I was treated, 3 other people my age range were treated by my doctor.

I was pregnant when mine developed, but other than that, my health was normal.

I to was recently diagnosed and do not fit the "normal" profile , I am 35 never smoked , some what of a social drinker ( very infrequent) , never had braces or even a tooth that rub that area . My lesion was on the left side of my tongue. I am going to ask Mon when I see specialist about Hpv, I am some what familar with Hpv due to working in a female clinic, however all my Pap smears have been normal and I do want the test for hpv 16. Interesting to hear they are saying a rise though, I mean maybe they will find another reason so people can take more precaution. My mother in law thinks maybe becasue I have Tattoos or I had my belly button pierced dont know if any of those would have any effect, I personally dont think so , but I am not a dr

Hi Redser,

Like you, I was just past my 29th birthday when diagnosed. I was stage II and had the neck dissection. I did not have radiation though. Like the rest of you - I also had no risk factors. I did not have braces as a child or before the cancer - but have since started Invisiline adult braces. My dentist (who found it initially) thought that it might be due to chronic tooth irritation - but I don't know. Mine started as a lump inside the muscle of my tongue and opened up into an ulcer at a later time. I, of course, had no idea any of it was cancer - until the dentist saw it.

I smoked and drank (but quit smoking decades ago and quit drinking more than ten years ago) but also had a rough tooth and my benign lesions started in 1990, with my tumor appearing in 2005, even 'tho I occasionally had the tooth smoothed (enough of my tongue in that area is now gone that the tooth is no longer in contact).

I find much credibility in the irritation as contributing factor theories!

HPV is rarely involved in tumors of the outer (oral, or movable) section of the tongue --I recall someone did a study and it was about 2.5%, as opposed to about 40% of base-of-tongue cancers (one recent study found 60%). However I would not be surprsied that chronic irritation or inflammation can be involved. I heard a very interesting paper once by a specialist in the progression of prostate cancer and he showed how chronic infection (such as prostatitis) can induce a cascade of cellular changes that in a percentage of men, ended up as cancer. Not the only cause, of course, but one of them.

Gail

The New York Times has an inte4resting article today about the special challenges facing people under 40 diagnosed with cancer. They didn't mention oral cancer as one of the ones where the rate of young people with a diagnosis is going up but since oral cancer tends to be overlooked a lot I guess I shouldn't be surprised!

http://www.nytimes.com/2007/01/30/health/30canc.html?_r=1&8dpc&oref=slogin

These posts certainly make for interesting reading! I imagine there are some other factors involved but irritating teeth is the most logical proposal I have heard yet.

BTW the HBO treatment is going great. After 20 sessions the ulcer on my tongue is slowly starting to heal, pain is lessening (ulcer was aggravating nerves in tongue) and scars on neck are getting softer. Also I believe the cells in my brain are being rejuvenated as I actually managed to complete a soduko puzzle today. Don't laugh, its the first one I have finished in three weeks! However I am still waiting for the beautiful freckle free complexion (I am sure I heard somewhere that oxygen is the latest beauty treatment). I will keep you posted.... ;-)

I was diagnosed last year at 38 years old (sorry, I'm pushing the upper limits of 'youngster'). I was in otherwise good health. I had none of the historical risk factors - family history, no smoking, no chewing, etc. Every time I see my medical oncologist he still jokingly asks me, "Are you sure you didn't use tobacco? Maybe you've just forgotten". I guess he hasn't seen many cases without the risk factors.

Oral cancer doesn't seem to have much sympathy for your age or even how you've lived your life - it can strike no matter how healthy you've otherwise been.

My treatment story was pretty much like many others...Cisplatin x 3 and IMRT x 35. Very difficult journey, and still not over as I'm concerned about a potential recurrence given some sypmtoms at the moment.

If there is a positive side, it's that as a young person I think you're physically better able to tolerate the treatment than somebody who is not so young and strong.
-Steve

Dear Steve,

I am sorry to hear that you suspect a recurrence. How disturbing that must be, considering all that you have already gone through. I will keep you in my prayers. I hope you are wrong about this! Please let us know.

Steve,

Sorry to hear some symptoms are causing you concern. I hope and pray they aren't what you suspect. Keep us posted please.

hi all!! im an oral/tongue scc "survivor",2 yrs out in april..knock on wood!I was a moderate/heavy drinker and smoked 1 ppd.My first occurance was @the age of 31. 2nd occurance just 3 months after that. In total 4 partial glossectomies. 33yo I found the tumor in my neck.
I have been told by several doctors....I was 2 young 4 oral cancer...drinking and smoking didnt cause it.. AND of course several doctors say it was the cause..what do you all think? HPV,HERPES?Im hearing alot of different things!!!

THANKS

rosebuddy,

I had no risks factors and the pathologists could still not determine the cause of my cancer in my tongue. You are probably never going to get a good answer to your question from any doctor.

rosebuddy,

You can be tested for HPV.

How does one get tested for HPV? Is it a blood test? Is it different from a PAP smear?

If you are a woman - you can ask for the HPV test with your pap smear. They automatically do the test now if you have ABnormal pap results - but do not if you have normal results (and you CAN have high rish HPV with normal paps!). So, you have to make sure to ask specifically to have the HPV test in addition to the pap. If you tell the doc that your ENT suspects that your tongue / tonsil etc cancer could be caused from HPV - they shouldn't give you a problem ordering the test.

Sorry - for men - I do not know.

I think they can also test your pathology slides somehow - but I don't know much about that part.

Thanks, Amy.....I did ask for an HPV test to be done when I had my last PAP smear done. My dr. looked askance at me, but he said ok. His nurse reminded him that they had received a notice that for the separate HPV test, they need to do a separate smear. He still didn't know for sure that he was doing the right thing, but he did it, and I got a report saying that both tests were negative.

I didn't know if this was the right kind of test or if I needed some sort of blood test.

If this was adequate, then I guess that my negative results give me the information I needed to know that my OC wasn't caused by the HPV virus.

As a virtual non-drinker, who hasn't smoked for 37 years, and who has NO cancer whatever in my family history, I am at a loss for determining a cause for my cancer. My surgeon feels that the smoking, even that long ago, must be the cause. It seems like a stretch to me.