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.