Of course oral cancer fear fuels up on a Friday night

[Worrywart84]

....because there’s nothing better than knowing you have to suffer the entire weekend before you can even call your dentist to demand a referral.

I’ve posted about this worry before in other threads but in case you aren’t stalking me, I have this red “sore” on my upper gum way in the back that I’ve noticed since June. Dentist dismissed it as irritation in August—when he dismissed it I sort of did too until I had my cleaning 10 days ago and on the way there I looked and the sore was still there. When I asked him about it he said to try brushing softer and do a salt rinse and then said he could refer me to an oral surgeon and they may biopsy it—this immediately had me panicking.

I’ve been trying to do as instructed but it is NOT going away and that’s not surprising given that it’s been hanging around since June.

So I obsessively googled oral cancer stats and then found that due to my age (34), I have a low chance of this being oral cancer. However, I went down the google rabbit hole again tonight, scouring photos and articles, and two things came up that have me absolutely freaking:

Erythroplakia, which is basically a creepy red patch that’s likely cancerous or precancerous and should be removed ASAP and also has a high recurrence rate

Or

Oral Lichen Planus, which is an incurable autoimmune disorder that can cause a red sore and carries with it the increased risk of cancer

Now all of a sudden I am terrified that while maybe I might not have oral cancer (yet), even having one of these sounds horrible and something that will haunt me with a cancer fear for the rest of my life.

It seems people of any age can get these so all of a sudden I don’t feel like the stats are comforting me.

My mind is saying...what ELSE could this be?! There is no benign red sore that just lasts for over 5 months. It has to be one of these awful things, doesn’t it?

[Fishmanpa]

Or

Dr. Google

Ya know, You're 34. I'm an oral cancer survivor. It's incredibly rare for OC to affect someone under 40yo. Your age and the fact that you've had "something" since June that hasn't changed or grown speaks volumes. I WISH my situation was like yours.

Cancer is an uncontrolled growth of abnormal cells. It doesn't come and go nor does it stop once it starts.

Real life professional help for the illness you so obviously are afflicted by would be my recommendation.

Positive thoughts

[Worrywart84]

I’m new around here but you’re like a legend/celebrity/great and all powerful oz on this forum so I really do appreciate your reply, especially given that you have actually battled oral cancer (I hope you are well now?)

I know hands down I have HA. I have been to 2 CBT therapists before, but my anxiety didn’t seem to lessen any.

But I legit am terrified that in addition to my HA, I also may be afflicted with Erythroplakia or Oral Lichen Planus. And both have this association with increased cancer risk. I am just a mess. I have more photos of my mouth and screenshots of Internet people’s mouths on my phone right now than I care to count.

If I could just grab onto one idea of something harmless that it could be, I could try to focus on that but my hopes are shot for it just being “irritation.”

[Sparky16]

One thing I have learned, the hard way I might add, is that there are far more things out there than just what is in the textbooks. Google, and to a surprising extent medical publications and books also, do not document the wide variations of benign things that can happen. It's good that although this spot has not gone away, it has remained unchanged otherwise. Talk to your dentist on Monday about getting a referral to a oral surgeon, and try to concentrate on something else this weekend. I like to play video games or do activities on Khan academy - stuff that keeps me too busy to think.

[Worrywart84]

Thank you Sparky.

I *hope* it hasn’t changed since June. Dumb me didn’t photograph it back then. And I don’t know if my dentist would remember exactly what he saw in August compared to this last visit.

The pic I took tonight looks way creepier than the pic I took 10 days ago but I am hoping it’s just lighting and angle that’s doing that.

But yeah, no drastic change I guess.

[Worrywart84]

Woke up this morning convinced there’s nothing else this could be but cancer. Why wouldn’t it have gone away by now? Already envisioning the call after the biopsy with the horrible news.

Has anyone with an oral cancer scare ever had a red sore on their gums for this long and had it NOT be cancer?

[AMomentofClarity]

Do you use tobacco? If not your odds of having oral cancer on your gum at age 34 are practically 0. Not to mention dentists are very well trained to recognize cancer....they wouldn’t be messing around if they thought it could be. And lastly, if you had OC for 5 months, it would be huge and have spread throughout your mouth by now.

[Worrywart84]

No tobacco and just moderate alcohol. But I have read it’s on the rise in young people for unknown reasons and there are young people getting it with no known risk factors.

I wish I would have taken a pic of it back in late June to compare because technically it could be growing bc I can’t remember exactly what it looked like then.

[AMomentofClarity]

No tobacco and just moderate alcohol. But I have read it’s on the rise in young people for unknown reasons and there are young people getting it with no known risk factors.

I wish I would have taken a pic of it back in late June to compare because technically it could be growing bc I can’t remember exactly what it looked like then.

Yes it’s on the rise in younger people due to HPV, in which it occurs back near the tonsils.

You would know if it was growing over the course of 5 months....there would be no question.

[Fishmanpa]

In the months since you first started this worry, you would be pretty sick. I was as well as everyone I know who had OC.

Positive thoughts

[Worrywart84]

Thank you both for talking me down. I know “reassurance” is a short lived feeling but at least it helps temporarily and I guess I can always just keep re-reading it.

So does OC grow fast? I was having a hard time finding the growth rate so I didn’t know if the “been there since June” was to my advantage or disadvantage if you know what I mean.

Either of you know anything about how long Erythroplakia lingers around before it grows and/or becomes cancerous?

[Fishmanpa]

Are you doing anything to treat your anxiety?

Positive thoughts

[Worrywart84]

I did start to read that free ebook link I saw you post for someone else...working on it :/

Hard to do “mid-panic” though once my mind is so far down this path. Almost think I need to start in between health anxieties (ha—this window of time seems nonexistent these days.)

[AMomentofClarity]

I did start to read that free ebook link I saw you post for someone else...working on it :/

Hard to do “mid-panic” though once my mind is so far down this path. Almost think I need to start in between health anxieties (ha—this window of time seems nonexistent these days.)

Sounds like you’d be a perfect candidate for medication

[Worrywart84]

Yeah I’ve considered it eventually but for the last 4 years I’ve been either pregnant or breastfeeding and I just don’t feel comfortable taking anxiety meds during that (health anxiety worries of course!)

[Worrywart84]

Just had my appointment at the oral surgeon’s...he was confident that this is not cancer, but is in fact, the autoimmune disorder oral lichen planus. I said I read that that carries an increased risk of cancer and he said that was from a study over 25 years ago and not to put too much stake into that. He gave me a steroid cream to use if this spot hurts me but I told him I am still breastfeeding and likely wouldn’t use it now and he said that’s fine and I could keep it for a rainy day if it ever flares.

Just wanted to update for anyone searching this thread later on.

[AMomentofClarity]

Just had my appointment at the oral surgeon’s...he was confident that this is not cancer, but is in fact, the autoimmune disorder oral lichen planus. I said I read that that carries an increased risk of cancer and he said that was from a study over 25 years ago and not to put too much stake into that. He gave me a steroid cream to use if this spot hurts me but I told him I am still breastfeeding and likely wouldn’t use it now and he said that’s fine and I could keep it for a rainy day if it ever flares.

Just wanted to update for anyone searching this thread later on.

Great news all in all. Sounds like you can rest easy and use the treatment as needed.

[Worrywart84]

So here I am again, battling with the “cancer” angle of this diagnosis.

So basically this lovely autoimmune disorder I got diagnosed with on Tuesday is considered a premalignant condition by the World Health Organization and between 1-5% of people with it go on to get oral cancer. It’s controversial if there is truly a link and more studies are needed apparently but basically I may have an increased risk of oral cancer because of this. So now I’m dwelling on that increased risk and feeling like I’ll for sure be in the 1-5%.

I don’t use any tobacco products and I drink in moderation (glass of wine at dinner, 2 beers at a party kind of drinking), but stuff I’m reading is saying to avoid alcohol b/c it will further increase my risk. So now I’m like terrified to ever have a glass of wine again. The oral surgeon who diagnosed me never mentioned eliminating alcohol, and in fact he was skeptical of the cancer link entirely. Now I’m not sure who to believe.

I feel like I am just marching toward an oral cancer diagnosis in my future. And stuff I am reading is saying basically by the time it’s discovered it’s usually in the advanced stage so I feel like I can’t even stay ahead of it if I tried even with 6 month checkups.

So long story short, while I got relief from my fear of currently having oral cancer, I now feel like I inevitably will get it in the future and that’s freaking me out.

[Worrywart84]

So I’ve posted a couple times about my oral cancer fear. It’s flaring again hard.

I’ve been seen by my dentist twice and an oral surgeon—the oral surgeon visit last week confirmed the “gash” is caused by an autoimmune disorder (likely triggered by stress..lolllolll) that can cause red sores in the mouth. It’s called Oral Lichen Planus. I would be satisfied with this finding (he said he was confident by appearance alone and didn’t think a biopsy was necessary or worthwhile being as though the treatment the same—do nothing or do a topical steroid if it bothers me)...but 2% of people with OLP end up getting oral cancer. Although 2% seems low, it’s significantly higher than the average population.

So since this finding, my jaw and ear throb and ache all day long, and my cheek and gums sting. Like are you kidding me—-this sets in AFTER my appt? So my HA brain spirals and says “this is the onset of your oral cancer!” Or “they missed it and you’ve had oral cancer all along!”

Here’s what I’m doing to not spiral—

-remind myself that oral cancer at age 34 is rare.
-remind myself that the spot has been there since June with no changes.
-remind myself that I’ve had periodic flare ups of jaw/ear pain for a decade, likely TMJ and it tends to last awhile.
-remind myself that between the first visit to the dentist and the second which was 2.5 months I felt no pain or discomfort and literally forgot about this and then the pain set it at the cleaning visit when I discovered the gash was still there and it has continued since then and has increased only AFTER the oral surgeon appt—psychosomatic? Is that really possible?
-telling myself not to Google anything.

But I’m tempted to call and demand another appt or a second opinion or a CT scan of my face or something.

[venusbluejeans]

This is just a courtesy reply to let you know that your thread was merged with another of your threads.

Please when posting on similar topics add it onto your previous post rather than starting a new one.

It is nothing personal it is just to make it easier for people to follow your story and to give you advice as a whole.

Emmz

[wilky44]

You can't just demand a second opinion or scan just because you want it. Nor should you be allowed one. You have a diagnosis by a trained professional, leave it at that. Let people who need a scan get one, and not be selfish.

[AMomentofClarity]

So I’ve posted a couple times about my oral cancer fear. It’s flaring again hard.

I’ve been seen by my dentist twice and an oral surgeon—the oral surgeon visit last week confirmed the “gash” is caused by an autoimmune disorder (likely triggered by stress..lolllolll) that can cause red sores in the mouth. It’s called Oral Lichen Planus. I would be satisfied with this finding (he said he was confident by appearance alone and didn’t think a biopsy was necessary or worthwhile being as though the treatment the same—do nothing or do a topical steroid if it bothers me)...but 2% of people with OLP end up getting oral cancer. Although 2% seems low, it’s significantly higher than the average population.

So since this finding, my jaw and ear throb and ache all day long, and my cheek and gums sting. Like are you kidding me—-this sets in AFTER my appt? So my HA brain spirals and says “this is the onset of your oral cancer!” Or “they missed it and you’ve had oral cancer all along!”

Here’s what I’m doing to not spiral—

-remind myself that oral cancer at age 34 is rare.
-remind myself that the spot has been there since June with no changes.
-remind myself that I’ve had periodic flare ups of jaw/ear pain for a decade, likely TMJ and it tends to last awhile.
-remind myself that between the first visit to the dentist and the second which was 2.5 months I felt no pain or discomfort and literally forgot about this and then the pain set it at the cleaning visit when I discovered the gash was still there and it has continued since then and has increased only AFTER the oral surgeon appt—psychosomatic? Is that really possible?
-telling myself not to Google anything.

But I’m tempted to call and demand another appt or a second opinion or a CT scan of my face or something.

Be honest.....would you believe a clear CT result if you got one?

[Worrywart84]

AMoment, yes I really believe I would. I think my anxiety comes more from trusting human judgement than test results. So I get nervous when it’s just one guy and his opinion vs a biopsy result or scan result. But I get what you’re saying. I know my doubts are most likely unfounded.

Wilky, in the US, you actually can request a second opinion and request tests (whether they allow it or not is the preference of the doc of course) because I’m paying for it lol.

[NancyW]

You can't just demand a second opinion or scan just because you want it. Nor should you be allowed one. You have a diagnosis by a trained professional, leave it at that. Let people who need a scan get one, and not be selfish.

Well, yes we can and getting a second opinion or scan isn't "selfish".. it's not like there's a limited number.

Now.. does he need one? That's a different question.

Healthcare is very, very different in the US, It sucks, however I'm not sure socialized medicine is better.

[Elen]

But it is 2 guys and their opinions so you have already had your second opinion.