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Joined: Aug 2013
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Ok, I posted a reply but don't see it? Lol So I will try again. Thank you guys so much! This is such a lovely place for help and support and you are all wonderfully strong awesome people. I will try what was suggested with the e-cig just to help with the final stretch of quitting, I have cut back but have not conquered quitting completely. My story, I found the lump around Christmas time 2012, just happened to feel it with my tongue, 2 months time it didn't go away. I went to a dentist because I thought I should get it checked, he dismissed it because he couldn't see it... It's in a very awkward place. 3 months more went by and it's still there, so I went to an ENT ( I don't have insurance) he wanted an MRI done on it but I couldn't afford it. So I had to get on carelink which is the Health System through the University in San Antonio they go off of income. I had to wait 2 weeks, then get referred to ENT which took another 2 weeks lol Then he referred me to the oral surgeon, he insisted I needed a biopsy because it was hard, and bigger underneath the surface, and because of its location. After biopsy everything hurt, my throaght, my right ear, my right jaw... It was like it connected with som many nerves. So anyways thank you for the support on the wait, I am going to try my best to calm down, and take some advice on moving appointment, if not I will at least know on Tuesday instead of Friday! smile I am extra nervous because I am pregnant and I may be crazy but I think hormones can do so many things to a women's body, may even speed up things. So silently trying to except something bad but hoping for the best. Thanks!


DX with MEC salivary gland 8/20/2013 age 27 F 9 weeks pregnant
Jessica, Mother to a 4 and 9 year old
11/18/2013 surgery to removed tumor, including bilateral jaw muscle. 2nd Trimester.
12/2/2013 results came back for clear margins
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Well as you can see from my previous post I was trying to stay positive, that is until they called me again this morning. Now I am just down right freaking out, I am in panic attack heaven. They wouldn't tell me what it was of course, but they told me I needed to schedule a CT scan for before my appointment on Tuesday. They said they needed more images? This can not be a good thing right?


DX with MEC salivary gland 8/20/2013 age 27 F 9 weeks pregnant
Jessica, Mother to a 4 and 9 year old
11/18/2013 surgery to removed tumor, including bilateral jaw muscle. 2nd Trimester.
12/2/2013 results came back for clear margins
Joined: Jan 2013
Posts: 1,291
Likes: 1
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Hi,

From what you wrote my understanding is the oral surgeon did the biopsy. Is the next appointment is with the oral surgeon or an ENT? Who is "they"?

Typically, CT scans are in the domain of the ENT and not the oral surgeon. The ENT would order a CT. Not to freak you out but a CT scan is generally not ordered if the biopsy is negative.

Please stay calm as there are still many facts unknown and things are moving pretty fast. don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
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The oral surgeon ordered the CT scan, and wanted me to have the scan before I come in and discuss the biopsy.


DX with MEC salivary gland 8/20/2013 age 27 F 9 weeks pregnant
Jessica, Mother to a 4 and 9 year old
11/18/2013 surgery to removed tumor, including bilateral jaw muscle. 2nd Trimester.
12/2/2013 results came back for clear margins
Joined: Jan 2013
Posts: 1,291
Likes: 1
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ok. Get the scan and be pleased and positive that you have solid medical professionals working so quickly. Next few days will zip by, just try not to dwell on it as nothing is firm yet.

You will want to save and use your energy later IF you receive a cancer diagnosis.

best, don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
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"OCF Canuck"
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Yes get the scan. They may have detected something, it could even be a dysphasia of some sort - and maybe they want to know how deep it is. ideally I would want to get an ENT involved at this point as an oral surgeon can only take you so far. I could very well be at whatever it is has to be removed so an ENT is the person who should do that. Try to relax. I know its hard but before Tuesday nothing will be done so freaking out will not help matters. Hugs.. Vent if you have to smile we're here


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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Ok getting the scan, just a little irritated that they can't tell me exactly why I need it before hand since there are risks to a fetus, minimal but childhood cancer would break my heart knowing I caused it. I am much calmer now, got some anxiety meds and decided my huge anxiety was worse for the baby then the meds at this point in time. Thanks for the support, I can't go through an ENT unless they tell me too due to my limited option of health care. If it is cancer I will need to figure out a way to go somewhere else but no insurance sure puts a damper on things lol Be back Tuesday to let ya know!


DX with MEC salivary gland 8/20/2013 age 27 F 9 weeks pregnant
Jessica, Mother to a 4 and 9 year old
11/18/2013 surgery to removed tumor, including bilateral jaw muscle. 2nd Trimester.
12/2/2013 results came back for clear margins
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
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"OCF Canuck"
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I actually meant dysplasia not what came off my ipad... Which is abnormal but not cancerous tissue. However the scan says to me they are concerned and want to be thorough. Clearly there is something they are seeing so they likely want to know the depth and involvement. It doesn't mean cancer - but my assumption is they want a better look at it. And a scan will give them a thorough picture. Hugs. And good 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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Well it is cancer, a cancer called Mucoepidermoid carcinoma. I have know idea what that really means and I have no idea how to go about dealing with this.


DX with MEC salivary gland 8/20/2013 age 27 F 9 weeks pregnant
Jessica, Mother to a 4 and 9 year old
11/18/2013 surgery to removed tumor, including bilateral jaw muscle. 2nd Trimester.
12/2/2013 results came back for clear margins
Joined: Jul 2012
Posts: 3,267
Likes: 1
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I'm sorry to hear, and we were all hoping it wasn't. MEC, which is rare, mainly effects the salivary glands, mostly in women. Surgery is the mainstay, and can include radiation, I believe. There is a whole page on this at the opening page that I can't link it right now with my iPad, but that would be a good start. I'm sure your doctors will tell you more, and depds on the type grade.

http://oralcancerfoundation.org/facts/rare/mc/

Last edited by PaulB; 08-20-2013 03:21 PM. Reason: link

10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
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03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
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02/19 Finally Cancer Free Took 10 yrs






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