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#196294 04-28-2018 06:33 PM
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Marya Offline OP
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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







Mary
Marya #196295 04-28-2018 07:25 PM
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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!


Diagnosed 11/17 SCC right side of tongue
Surgery 2/18 Partial Glossectomy
Radiation 3/18 - 5/18
Clear PET scan 10/18
Non smoker, occasional alcohol use
Marya #196298 04-29-2018 03:11 AM
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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.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Marya #196358 05-06-2018 07:04 PM
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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!!

Last edited by Kristen S; 05-06-2018 07:04 PM.
Marya #196482 05-22-2018 05:56 PM
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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






Last edited by kfisher; 05-22-2018 06:00 PM.

3/2014: 25, no risk factors (nonsmoker, rare drinker, HPV negative) SCC right lateral tongue, T1N0M0 - well-differentiated; surgery - removal of tumor, salivary gland + neck dissection
11/2017 - ovarian torsion
12/2018 - basal cell skin cancer



Marya #196484 05-22-2018 07:21 PM
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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.


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
Marya #196543 06-03-2018 08:54 AM
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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.


Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor

Finished all treatments May 25 2007
Surviving!!!
Marya #196545 06-03-2018 01:17 PM
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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.


Diagnosed 11/17 SCC right side of tongue
Surgery 2/18 Partial Glossectomy
Radiation 3/18 - 5/18
Clear PET scan 10/18
Non smoker, occasional alcohol use
Marya #196644 06-23-2018 06:24 PM
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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. frown


Kristen S.
Stage 3 SCC Surgery 2/18
35 radiation treatments-completed 6/18
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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.


Stage 1 SCC on tongue 3mm (7/1/14)
Biopsy had clean margins
Successful Surgery to remove more tissue and confirm wider margins (7/8/14)
Hoping I'm one of the lucky ones and this is just a small blip in my life, and just makes for a story of "how I spent my summer vacation" down the road.
Non Smoker, Social Drinker (pre DX, but no more!)
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