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Rahel Offline OP
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Hi David,

Could you give me a little more info about that?

Thanks,

Rahel


Leukoplakia 3/07, 34y.o. non-smoker/drinker
Biopsy 3/08: clear (no monitoring suggested - grr)
Biopsy 10/18/10: SCC, Stage 2 1.
Surgery 11/15/10: glossectomy R side oral tongue & partial neck dissection. Margins, nodes & salivary gland clear!
Subsequent MRIs/CTs/PETs: All clear!
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Well this thread has realy made me think . Rahel I wear a mouth guard for roller derby and the part of my tongue where i had the SCC was where the mouth guard used to rub on. In fact I used to rub my tongue over the bumps of the guard quite subconcioulsy/unwittingly- so who knows? I also smoked for over 10 years (although quit a year before dx)so that's prob the more likley cause


Monica,33 Mum of 3. Former smoker
SCC right lateral tongue. Intially thought to be cell dysplasia and dx as SCC after surgical excision.
Nov 2010- partial glossectomy (1cm in width), partial neck dissection. Margins clear, nothing found in nodes- YAY! Benign tumor on saliva gland.
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[quote]
Here's the shocker: there was no cancer to be found anywhere in the tissue removed from my tongue, lymph nodes, or salivary gland. The 2 cm firmness was apparently inflamed tissue and scar tissue. This is apparently unusual, but not unheard of. The surgeon gave 2 possible explanations: either the cancer was so small it was removed with the 2 mm biopsy, or the biopsy stimulated my body's immune system to kill off the remaining cancer. The latter scenario is apparently unlikely for this type of cancer. I asked if such a large mass of inflamed tissue is common for this size cancer, and the doc said No, it's very unusual.
[/quote]

I also had no cancer found in the tongue or nodes after my surgery. the intial biopsy had apparently eliminated it all.


Monica,33 Mum of 3. Former smoker
SCC right lateral tongue. Intially thought to be cell dysplasia and dx as SCC after surgical excision.
Nov 2010- partial glossectomy (1cm in width), partial neck dissection. Margins clear, nothing found in nodes- YAY! Benign tumor on saliva gland.
Joined: Nov 2010
Posts: 29
Rahel Offline OP
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Monica, that's really interesting.

Here's an update in my case - the first path report following surgery was incorrect. Apparently there WAS cancer beyond the biopsy - but it was an unusual type ("poorly differentiated") so hard to be seen.

Once the pathologist looked at the biopsy slides, which had been stained with a special keratin stain by UCSF where they diagnosed me, he realized that he had missed the cancer when he looked at the surgery slides without such a stain, because he was looking for a more common pattern of cells. The pathologist was profusely apologetic and repeatedly said he should not have missed it - as head of the path dept he apparently had higher standards for himself than this. He explained how it got missed, and acknowledged that even though there are reasons, there's no excuse for the mistake.

He was also very patient-friendly, taking time to show me the slides, walk me through what the cancer looked like, etc. And he's now running additional slides WITH keratin stain - for some of the margins, and on the larger nodes and on an area where the cancer appeared to be near a nerve. It was amazing how obvious the cancer was with (vs without) the keratin stain - it showed up completely clearly.

Nonetheless, I'm still suspicious of the tongue-rubbing, and doing everything I can to get a solution.

Rahel



Leukoplakia 3/07, 34y.o. non-smoker/drinker
Biopsy 3/08: clear (no monitoring suggested - grr)
Biopsy 10/18/10: SCC, Stage 2 1.
Surgery 11/15/10: glossectomy R side oral tongue & partial neck dissection. Margins, nodes & salivary gland clear!
Subsequent MRIs/CTs/PETs: All clear!
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I wasn't given as much info on the pathology as what you were. But my intial biopsy showed moderate cell dysplasia which was treated in day surgery by surgical excision (bascailly they just scraped the surface) and I recovered and was eating normally within 2 days. The pathology results from the the scraping they took however showed 3 SCC "foci" - which from what they told me are tiny, tiny cells. From then on in I was refered to ENT specialists as previously I was being treated by dental specialists. THe intial dental surgeon I was dealing with felt we could just leave it be and monitor it, but the MRI and cat scans showed enlarged lymph nodes so it was all a downward spiral from there. I've had fleeting thoughts that the neck dissection and further partial glossectomy were unnecessary but I've found that dwelling on those thoughts is just too negative- I'm comfortable with the treatments that I've had as precautionary and hopefully preventative. The way one ENT surgeon put it was that they have cut out all the pathways therefore elminating its possible spread.
THe chronic irritation hypothesis is interesting, will be curious to see what others say.

Last edited by monicacc; 12-08-2010 07:10 PM.

Monica,33 Mum of 3. Former smoker
SCC right lateral tongue. Intially thought to be cell dysplasia and dx as SCC after surgical excision.
Nov 2010- partial glossectomy (1cm in width), partial neck dissection. Margins clear, nothing found in nodes- YAY! Benign tumor on saliva gland.
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Check this out. This site is great for the printed info. Anytime you need to go to the bottom of the page and click on SEARCH and it opens up to this site's info.

www.oralcancerfoundation.org/facts/stages_cancer.htm

Grade

The definitions of the G categories apply to all head and neck sites except thyroid. These are:

G - Histopathological Grading

GX - Grade of differentiation cannot be assessed
G1 - Well differentiated
G2 - Moderately differentiated
G3 - Poorly differentiated
G4 - Undifferentiated

Differentiation: In cancer, refers to how mature (developed) the cancer cells are in a tumor. Differentiated tumor cells resemble normal cells and tend to grow and spread at a slower rate than undifferentiated or poorly differentiated tumor cells, which lack the structure and function of normal cells and grow uncontrollably.

In other words, poorly differentiated tumors are able to cross all boundaries of tissue types (muscle, soft tissue, etc.), even into bone.







David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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You sound like Me - your story is Exactly like mine - except for the tongue twitches! My story starts 6 years ago! When I had a molar capped. From that point on the left side of the tongue was irritated - in 2008 I had a biopsy it came back inflamed tissue... (in between I asked them to file down the tooth a little to limit the irritation but it didn't help) - this year I had another cap put in as my dentist recommended it for the tooth directly beside it. The situation worsened! Went back to my doctor - he sent me to a specialist for a second biopsy - it came back ssc - well differentiated - no
metastacies based on the CT scan... I am due for an MRI this week for staging (it's approximately 1x2 cm) then to the specialist 1st week in January hopefully - I asked the same question you did about the chronic inflammation - that's how I found you - I used to be a nurse so let me share - lung cancer - most of it is caused by smoking - what does smoking do? It irritates the lung tissue causing long term inflammation and cell changes - do you not think the same is likely true of this kind of cancer? I hope my outcome is as good as yours - despite the unnecessary pain you went through...
I am very much considering having the two molars removed... If nothing else it would minimized the irritation and pain - they initially thought I had lichen planus (I may still have it ) but while looking into that I read that allergies to the amalgam in some dental fixtures can mimic lichen planus - all in all - I agree with you - treat the cancer but the real issue HAS to be - figure out WHAT is causing the
irritation (or in your case how to stop your twitches) - I also need to point out - I go to the gym regularly am a vegetarian do not drink alcohol or smoke - nor do I do drugs! Paranoid - I had them test for HPV - I was negative - bizarre!
Best if luck!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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I am sorry I didn't read through to the end here only the first page, Rahel.. I am sorry that they didn't catch it in the second pathology hopefully your margins were clear. But thank you for the update. It will give me a few extra questions to ask post operatively. I am to meet with the specialist hopefully next week. And get details on what he wants to do with regards to surgery. To any of you out there who have had the hemiglossectomy with the neck resection... can you tell me a little about the recovery, scarring etc? I do work - will have to take the time off but - it's hard to get an idea of what I am facing. Reading up on the procedures isn't as helpful as hearing from people who've been through it. I am scared but optimistic.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Re Chronic irritation causing cancer of the tongue

I am a dentist with 25 years of experience. i had SCC of the (L) lateral border of the tongue 8 years ago (at age 43), which was surgically and successfully removed (twice). I have never been a drinker or a smoker.
In my opinion, there is no doubt that chronic irritation can cause SCC. I have been �nipping� and biting my tongue for a long time, causing an ulcer on the tongue, which had been biopsied twice (with a negative result both times) previous to the SCC diagnosis.
Here is my theory. I have a narrow palate, courtesy of 2 upper premolars extraction when I was in my teens. The narrow arch had not accomodated my tongue well, as was shown by scalloping on the lateral borders of my tongue. Scalloped tongue is a tell-tale sign that the upper arch is too narrow. It follows that when the tongue �appears� to be too big, it is very easy to bite the tongue inadvertently during the course of normal talking, eating and swallowing. Furthermore, i have been nipping my tongue while I was asleep, my wife has frequently heard my teeth �clanking� together while i was asleep. My understanding is that when the tongue lodges in between the teeth, it prompts a proprioceptive reflex for the mandible to rapidly elevate, brought on by the receptors in the periodontal ligaments of the teeth. This is a similar action to the knee jerk reaction when the knee is tapped. When the teeth chronically irritate the tongue, it is feasible that there would be cellular changes in the tongue tissue.
So there is another reason not to extract teeth for orthodontic reasons. Extractions will only further collapse the already underdeveloped arch.

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Interesting. The chronic irritation thing here in the US has never been proven, though speculated on greatly, the subjects are mostly denture wearers, and as a dentist you know there is no such thing as a happy lower denture patient, particularly as they age and the ridge gets smaller. Those things move around against the soft tissue a lot. But any look at the situation here (as a cause of malignant transformations) has neglected to remove bias. Most reports have not excluded (or properly documented) other known risk factors in their published opinions and patient populations examined, of patients such as tobacco use.

You would think that chronic irritations mostly likely cellular changes would produce hyper keritosis to protect the tissue. We see this commonly as a linea alba on the cheeks of patients, also from chronic nighttime contact with the juncture of the maxillary and mandibular arches.

I wish that we had a peer reviewed paper that addressed the cellular changes from things like this since in the OC community people are very divided about it.



Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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