Hi everyone,
I had surgery 2 weeks ago to remove tumor on right side of my tongue. I also had neck dissection. I am T1N0. No aggressive features (nerve or vascular invasion). Margins are clear so this all the treatment that is needed now. This was missed by 2 dentists and an ENT because I did not fit the risk profile. I am a non smoker non drinker and HPV negative. I was told it was oral lichen planus. I found an expert in OLP and was immediately sent for a biopsy. Opportunities were missed to be biopsied and treated earlier. The lesion was there for about 9 months.

I visited two universities for treatment options. I was told I am not alone. There is a significant increase in women under 50 non smoker non drinker HPV negative that are developing oral SCC. This makes me think something environmental is contributing to the increase. I have lived on my cell phone next to the right side of my head for years for work and personal calls.

For those of you HPV negative and NS ND, did you use a cell phone often next to your head? I am sure it is not the sole factor or this would be an epidemic. But the uptick in this age group and wondering what we all have in common brings the cell phone to mind.

I have made a few changes like using the phone on speaker and not keeping it on me at all times. Just curious about what others in the same boat think about the cell.

Marya
April 2018 T1N0 Non smoker, non drinker, HPV negative, surgery

I too had a lesion on the right side of my tongue. Also non smoker and occasional drinker. I had clear margins but it was near a nerve so on to radiation. This is interesting about more women developing this, although I'm older, and used a bluetooth in the ear where the cancer occurred while working. Makes me wonder. Good luck on your journey!

Welcome to OCF! Im so sorry to read about what you've been thru. You are lucky to have had the right doctor do the biopsy to discover your oral cancer (OC).

Over the years Ive been here, Ive seen all ages get OC. It could be for any number of reasons including their own body's predisposition. Years ago cell phones were touted as being dangerous. Im sorry but I dont know what the outcome to the studies was. Long term usage may not have been reported either as the popularity od cell phones wasnt as much before around early 2000's. I havent seen anything yet about a new rapidly growing group of female patients who are young and non-smoking. There is 5-7% of patients who do not fit any of the main causes of OC that are deemed to have no known cause. OCF does have quite a few of the no known cause segment, both men and women.

I also had a lesion on the right side of my tongue. Stage 3 SCC. Hemiglossectomy this past Feb and just started radiation last week. Surgeon and oncologist had different opinions about chemo but at this point, it's a no go.
I'm 44, non smoker and occasional drinker. Negative for HPV. No idea why I got OC. I'm not a big cell phone user and think I was just one of the unlucky ones. My first signs of the SCC were 3 years ago. I had the area biopsied by an O.S. and he said it was epithelial dysplasia and not to worry. HA! Lesion somewhat healed for a few years and then came back with a vengeance this past Summer. It's been a tough journey and you HAVE to open up and tell family, friends and neighbors. You need everybody at your side for support. I isolated myself about 2 months after surgery and went into a depression. Thank goodness I reached out for help. Much better now. Definitely have better days than others but am moving forward.
Good luck in your journey!!

Hi,

I had SCC on the right side of my tongue, too. T1 N0, well differentiated. I’m almost at the 5 year mark but I got it at the age of 25, am a non-smoker, HPV negative, and didn’t drink other than occasional socially. The sore was there for 6 or 7 months before my biopsy.

There is a rise in young, non-smoking women who are HPV negative getting tongue cancer. Not any other type of oral cancer. Tongue. I think I read that it’s one of the faster growing segments of patients being seen for this but I’ll have to find the article/study. I wonder about environmental factors, too. There’s got to be something that will connect the dots. They mentioned something about mouthwash and teeth whitening and an interaction with estrogen but this was just in pondering what possible reason there would be for the increase. I’m not sure about cellphones but I haven’t thought much of it. But I do feel it would be interesting to do a study on our specific group to see if they can find a common factor. Although I realize that epidemiological studies, while they can prove correlation, can rarely prove cause.

I wish you a speedy recovery and am sorry you are going through this.

Kat

I was diagnosed in 2005 with SCC of the right lateral tongue. I also had no risk factors. I did a lot of research, asked a lot of questions, and even submitted some of my “cells” for a study looking into a genetic connection and another study (but don’t recall specifics). Over the years I meet many women (in person and on-line) who also had no risk factors and based on the people I meet I think the 5-7% of “no know cause” is on the low side. I did have a cell phone in 2005, but at that time it was not my primary communication method. My doctors suggested irritation from a sharp tooth rubbing my tongue, but I didnt have any sharp edges on the teeth in that area.

Hi,

I too fit this demographic. Diagnosed at 33 (12 years ago) with SCC on right side of tongue HPV- I am a lot got social drinker and smoked briefly in cmy pledge mainly socially

the time or was large and very aggressive and I had a full glossectomy, skin graft and neck dissection chemo radiati N the works.

I had a removable denture in that side hat rubbed my tongue so maybe that plus smoking did it who know. It is a strange phenomena that it is rising amping our demographic.

I think mine was caused by a broken crown on that side. I chewed a lot of gum that rubbed on my tongue. I developed leukoplakia there that turned into a SCC after 3 years.

I truly also think that trauma played a HUGE factor in my situation. I had ortho done as an adult and the retainers afterward would rub alongside my tongue. In the exact spot that my SCC was diagnosed. Now, I also believe that I am genetically predisposed to cancer based on some genetic testing I've had done. For some reason, the DNA in my cells cannot repair damaged cells as they should. So, after having 2/3 of my right side tongue removed and 7 weeks of radiation, I am on the mend.
I keep praying that this NEVER comes back but I have to wonder as long as I super duper take care of my mouth and inflict no future trauma, I might get lucky.
The other HUGE lesson I've learned is to address the problem when I notice it. I had a canker sore for over 6 months before I had it biopsied.

Interesting. I still believe that's what caused mine too. I was actually going through a lengthy Invisalign orthodontia plan when I was diagnosed. During the earlier stages of the treatment, I'd had "hooks" on the inside of two lower molars, and the braces had little extensions that hooked over these. My lesion was exactly aligned with where one of those had been, and I recalled that it had rubbed occasionally to the point of slight bleeding. The doctor I went to for my 2nd opinion agreed that this could have been the cause, but also said that the bleeding might have been due to having the lesion there, vs. my theory and that there was just no way to know. My lesion was very small, caught very early, and the timing was right for that to have been a factor. I'm also now very watchful of any trauma to my oral tissue.

You are very fortunate that the lesion was caught early! Good to be mindful! Good luck on future health!!!

I too had no known risk factors. Diagnosed this past Feb at 52. T1,pN1,M0 on the right side of my tongue and floor of mouth. Had surgery in Feb for partial glossectomy and floor of mouth fill in where they took the tumor out. Did proton therapy and chemo in April-May and am now 5 weeks past rads.

Never smoker I drank wine socially, had braces as an adult, drank Diet Coke. Did white strips occasionally. I have a cellphone but use it on the other side of my head since I’m a lefty.

There’s got to be some common thread here. Something to help out women from not getting it in the first place.

Wish there were a study on this.

Hugs,
Linda

Linda,

My current medical oncologist did a study looking for commonalities between younger women patients with SCC on the mobile tongue that fit in the 6-7% "no risk factors" and found nothing to link us. (Yes, I was included in the study.)

It's perplexing and having recently been diagnosed with my third oral SCC extremely frustrating. I wish I had an answer to how I can make this stop.

- Margaret

For what it's worth, though mine was HPV+, I had NO known risk factors for either cancer or HPV. There's a list of ways one can catch HPV, and I don't fit any of them. (Yes, I am married with kids, but we were both not active at all until marriage. So ... nobody to catch anything from, because no previous partners to have caught anything from. Which is TMI but some doctors seem to need that spelled out.) So it appears that there are other ways to catch HPV than are currently recognized by the general medical community. That, and my so-quick recurrence, are what prompted my doctors to hit it HARD with rads and chemo that second time, even though the cancer itself didn't warrant such aggression. Doctors don't like things that baffle them, I have learned.

Even the family genetics are iffy on this one ... have some relatives who got cancer, but not till their 80s, which they say doesn't count (and since those same relatives are in and approaching 100s, clearly didn't slow them down, either).

I do have an issue with anxiety disorders and related illness, which might be the one contributing risk factor for me. Several years of non-stop throwing up from panic attacks had to leave some damage somewhere, though I would have expected it to be the throat (and that's sure showing now, post-rads!). But other than that ... nothing that anyone can pin down.

So if you broaden your parameters to HPV+ but no known risk factors there, you might be able to find something? Would your doctor consider a new study including that? I'd be happy to provide data if it helped. That's probably a separate study in itself, really, but it baffles me ... and since it comes with its own set of judgments from folks, not something I generally discuss when people ask, "Why? How did it happen?" (as if it matters anyway, once the cancer is there!).

Anyway, ((hugs)) and good luck with your research!

This is such an interesting thread. Although I am sorry all of you have had to go through this, it is comforting to know that I am not alone. I was diagnosed in Jan. 2018 with microinvasive carcinoma measures 0.25 mm. I had a partial tongue removal and neck dissection with the removal of 29 lymph nodes. I smoked less than a pack of cigs during my early teen years, drank some in college but I haven't had a drink in 20 years. I think it is interesting that most of us had it on the right side. I had not thought about the cell phones, but I was concerned about my long use of Aleve and Tramadol. I sleep on my right side and wondered if the toxins had pooled there. I did have a complete hysterectomy in 2004 so have been on estrogen patches as well. My surgeon also stated that they are seeing a higher number of women in their 30s, 40s, and 50s with low risk factors being diagnosed. There has to be a connection. Thank you for sharing your stories and I feel lucky to have found this group.

I just had my regular checkup yesterday with my ENT (4 years out now - yay!) and had to see a new provider as my regular doctor is out on medical leave. Anyway, the new doctor, who is new to that practice, is a woman and actually also mentioned this phenomenon to me during the exam. She said that no one knows the correlation right now, but that one school of thought is that it is estrogen related.

Kristin - While I understand what you are saying, HPV+ SSCOT tumors have a distinctive marking. They might not know how you contracted HPV but they know for sure that HPV is the cause of the mutation and your specific tumor.

For HPV- SSCOT, and I’m not sure if any of you mentioned this in previous posts, I also think it’s worth noting that it’s interesting that the increase has been seen predominantly in Caucasian females. Although, I’m not sure if it’s more prevalent in other races now than when that information was first presented?

I would ask another question too which is if our segment (or possibly people in general who are non-smokers, not heavy drinkers and HPV-) who get SCC are prone to canker sores and (and I know this might seem weird but stay with me for a second) maybe acne? If it’s happening in people who are already prone to inflammation, there might be something there to look at too. I’ll add something else here, just because I find it interesting - doctors aren’t sure what causes canker sores, however, hormonal changes can cause flares in some people. Acne too. So if certain inflammatory reactions are thought to be based on hormonal changes in women, maybe there is something going on there especially if they are already looking at estrogen.