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Rahel Offline OP
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Hi David,

Thanks for your post, and thanks for taking the time to help me think this through! I'd love if you could give me a little more info about what you're suggesting, or why you ask that. I'm new to all this, so I can't tell what you're getting at.

In response to your question, there wasn't a group specifically identified to me as a "comprehensive cancer center," but a number of doctors who serve on the Head & Neck tumor board together met with me and evaluated my case before surgery - including oral surgeon, chemo & radiation docs. All suggested surgery as first step. The oral surgeon is apparently quite good, and serves as an oral cancer consult on difficult cases throughout the northern Calif Kaiser region. (However, that same oral surgeon is the one who saw me years ago and didn't have any solution for the chronic tongue movement/pain - basically said oh well I don't know what to do.)

So if you're asking whether an oral surgeon who specializes in cancer has seen my case, and has consulted with other cancer docs, the answer is yes.

Can you tell me a little more about "the question behind your question"? Were you just trying to make sure I had been seen by adequately trained oral cancer professionals? If so, the answer is yes.

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!
Joined: Sep 2006
Posts: 8,311
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Here's a link to OFC's CCC's

CCC's

http://www.oralcancerfoundation.org/resources/cancer_centers.htm

BEST CANCER HOSPITALS

http://health.usnews.com/health/best-hospitals/cancer-hospital-rankings/

Re your other question...yes I just wanted to make sure you have exhausted your treatment options. I personally got 5 different opinions before I let anyone treat me and I would be dead today (most likely) if I had stopped at numbers 1, 2 or 3 so I'm always an advocate of seeking multiple opinions even if you think you've been to the best.


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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Rahel Offline OP
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Hi David,

Thanks for the feedback. At the moment I've got a little different focus than you had, perhaps because my cancer was just stage I, and there was no cancer in what they thought was my tumor - it was just inflamed tissue, possibly from years of chronic irritation. My detectable cancer was limited to the biopsy, and my focus right now is on:

How do I find a medical professional familiar with addressing involuntary tongue movements?

It seems cancer specialists really don't know/care about involuntary tongue movements. I'm concerned that if I don't find someone to help interrupt the tongue movement, then my healing process is at risk at the incision site, and cancer recurrence is a greater possibility. Plus the tongue movement leads to constant pain.

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!
Joined: Sep 2006
Posts: 8,311
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Perhaps a nerve specialist?


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.
Joined: Nov 2010
Posts: 29
Rahel Offline OP
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Thanks for everyone's help so far. Anyone else out there with an experience of SCC showing up on the same site as chronic irritation/biting?

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!
Joined: Jan 2006
Posts: 756
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Rahel,

It has been suggested to me by a few doctors that chronic irritation could be the cause of my OC and OC recurrence. I�m in the 7% category with no know risk factors, and I had a recurrence this year on my tongue in the same spot as the first tumor. Although there were no rough edges on my teeth, my dentist made me a mouth guard to wear to hopefully cut down on any possible chronic irritation. I only started wearing it about a few months before it was confirmed I had a recurrence, but I suspected the recurrence a few months before it was confirmed with a biopsy.


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)
Joined: Nov 2010
Posts: 29
Rahel Offline OP
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Susan, that's interesting to hear. Your docs are suggesting that chronic irritation is the cause, and my docs keep denying it. Glad to hear there are at least some docs out there who acknowledge the possible relationship between chronic irritation & cancer.

I'm trying to find someone to help with the chronic irritation, and hope that I soon find someone who will be able to make an effective mouthguard - the "usual" ones, and even some customized ones, didn't really help enough.



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!
Joined: Jul 2010
Posts: 95
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I do not believe that there is a clear answer to the question" Can chronic irritation cause cancer?"
It is hard to separate the cause and effect in my opinion. A sore spot may be sore because it is precancerous. Opinions and believes by doctors about such a connection is mostly anecdotal and not based on strong data. It is still a good idea to have any chronic sore place checked by a specialist.

I Brook MD http://dribrook.blogspot.com/

Joined: Nov 2010
Posts: 29
Rahel Offline OP
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Hi all,

Here's an update - apparently the pathologist made a mistake in his initial review of my tumor tissue. He revised his path report, stating that there was cancer after all, in the tissue removed during surgery. The initial biopsy slides - done at UCSF not Kaiser - used a special keratin stain making the cancer visible, and the Kaiser pathologist had been unaware of that special stain when he first reviewed the surgery specimen.

The pathologist was very apologetic about the mistake. While this is less good news, it is also more comprehensible. In a strange way, it is a relief to have an explanation that makes more sense. I still don't need to do radiation or chemo, thank goodness.

I'm hoping to meet with the pathologist next week, to review the slides with him, and he can walk me through what was unique/different about my tumor which made it difficult to spot. Apparently my cells were "poorly differentiated" and "spindly" which made them different from the usual cancer pattern.

The pathologist said there's a reasonable concern that chronic irritation could lead to cancer, which was helpful. Maybe that will be the backup I need so the medical system finally acknowledges and addresses my irritation from tongue movements, which cause me pain and which I can feel myself continuing to do.

Thanks for all the support.

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!
Joined: Sep 2006
Posts: 8,311
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My cancer was poorly differentiated but don't think that "poorly" means that the cancer hasn't got it's act together, quite the contrary, as this is the worst diagnosis.

Watch this cancer VERY closely.


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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