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#148436 - 04/17/12 11:08 PM Lump INSIDE Tongue
honeybee77 Offline
Member

Registered: 04/17/12
Posts: 13
Loc: Missouri, USA
Hi everyone,
I'm new here and a bit overwhelmed. Let me give a bit of background on myself.

I began having issues with my tongue about 6 months ago, when my second child was just a month old. I noticed a whitish area and a loss of tastebuds all around the outer edge of my tongue. I saw my regular dentist, an ENT, an oral surgeon, and also had a velscope exam at yet another dentist. Everything was fine at each exam. I was still worried (I have health anxiety anyway) but decided to let things go at least for the time being. I have no health insurance and I was out of money from all these appointments.

Well, fast forward a bit and I've now found a lump INSIDE my tongue, maybe a half inch to an inch from the tip & slightly off center. It is pea-sized, round, and mobile. I can feel the edges distinctly and can move it around a bit with my fingers. Nothing can be seen from the outside of the tongue at all, it can only be felt with either my fingers or my teeth. It is around the area where the anterior lingual glands are. I do not remember hurting this area and it's now been there at least a month with no sign of going away. I admit I have numerous cavities that developed through my pregnancy and I'm working to gradually get them repaired. I don't think that has anything to do with this though.

I tried to get the oral surgeon to feel the area but he told me he could not even feel anything! To me it's blatantly obvious. I don't know where to go from here. I really want it removed and am losing sleep over it. The thing is, I know my ENT would refer me to the oral surgeon for removal but he is the one who could not even detect it when I pointed it out to him!

Any advice would be appreciated. I don't think I'll be able to rest until I have a biopsy or removal of this lump & know what it is. Does anyone have any idea what it could be, besides cancer? I'm petrified right now & have two young kids that need me.

Thank you in advance.
_________________________
queenbee

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#148438 - 04/18/12 12:57 AM Re: Lump INSIDE Tongue [Re: honeybee77]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9158
Loc: PA
Welcome to OCF! I would advise you to find an ENT (ear, nose and throat specialist) who treats oral cancer patients. Some deal more with putting tubes in kids ears. Explain your concerns and ask them to do a biopsy of the lump. Of course it can be many other things. Im not a medical professional but have knowledge of oral cancer from being on this forum and a former patient 3 times. Dont put it off any longer! Find out once and for good what it is and then take care of it so you can enjoy your family.

Hope its nothing to worry about! Good luck!
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#148439 - 04/18/12 01:45 AM Re: Lump INSIDE Tongue [Re: ChristineB]
honeybee77 Offline
Member

Registered: 04/17/12
Posts: 13
Loc: Missouri, USA
Thank you Christine. Will they do a biopsy or excise the whole thing?

Is an FNA acceptable or can it miss cancers at times? Also, is a tongue biopsy particularly painful? Will I need help caring for my kids afterwards?

Thanks again
_________________________
queenbee

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#148442 - 04/18/12 02:16 AM Re: Lump INSIDE Tongue [Re: honeybee77]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
Hi there I originally had no visible sign of my tumor it was just a reddened area and sore.

Go see another ENT ask him or her to palpate the area and remove it. An FNA is okay but excision with give you a definite answer. 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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#148444 - 04/18/12 02:20 AM Re: Lump INSIDE Tongue [Re: Cheryld]
honeybee77 Offline
Member

Registered: 04/17/12
Posts: 13
Loc: Missouri, USA
Thanks, Cheryl. I have been looking online but I don't think there's an ENT that specializes in oral cancer within about 3 hours from me. Is it essential to see one that does? Should I rather go back to the oral surgeon? I am sorry for all the questions. I am just afraid of making the wrong choice and making something worse.
_________________________
queenbee

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#148446 - 04/18/12 02:31 AM Re: Lump INSIDE Tongue [Re: honeybee77]
honeybee77 Offline
Member

Registered: 04/17/12
Posts: 13
Loc: Missouri, USA
So Cheryl, am I correct in saying that your tumor was inside your tongue? Was it a mass that you could feel, such as what I'm describing?

I've read a lot since I discovered this and have not found any instances of cancer developing inside the tongue with nothing visible outside, that's why I'm asking for more details from you. What I read also seems to indicate that most tongue cancers develop on the edges of the tongue and that it's rare for it to affect the dorsal tongue. Is this true? Can you tell me more about your tumor?

Thank you
_________________________
queenbee

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#148447 - 04/18/12 03:09 AM Re: Lump INSIDE Tongue [Re: honeybee77]
honeybee77 Offline
Member

Registered: 04/17/12
Posts: 13
Loc: Missouri, USA
One additional question to whomever may know the answer:

I just read in another thread that a scan could rule out the need for a biopsy. Is this true? Would a scan even pick up a small lump within the tongue and be able to tell if it needs to be removed or not?

What kind of scan would this person have been referring to?

Thanks again, I apologize for being full of questions.
_________________________
queenbee

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#148448 - 04/18/12 03:14 AM Re: Lump INSIDE Tongue [Re: honeybee77]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9158
Loc: PA
I know you are upset and worried. Im a mom and I know how it feels to think "what will happen to my children?". Take it step by step. You need to take care of yourself so you can care for others.

Here is more info. I am also going to give you a link to the main OCF pages where it talks about diagnosis. Too often new members are so hungry for instant info that they miss checking the main pages where there is tons of important things to read.

A FNA is not as good as a regular biopsy. Yes, it will be sore for a while. If I had to take a guess, I would say the first week will be tender and then it will gradually improve. You could be sore for 2 weeks, never know or maybe you are one of the lucky ones who bounce back quickly and in 3 days you are ok. If I were in your shoes, I would line up helpers for the first 4 or 5 days. Not that you will be incapacitated, but you may not be feeling up to caring for the demands of young children from morning til night.

It is very important to get this checked. Not that I would think it is cancer. That cant be diagnosed over the internet. I am basing this statement on what you said, that it has been there for a while. First you noticed a patch then the lump. Not all tongue cancers can be seen with looking in a mirror, many are located in the base of tongue where its not possible to look. I cant predict what your doc will do in regards to if they will excise it or do a biopsy. Dont worry! Whatever they do will be a step in the right direction (unless they dont biopsy it). A biopsy is the only way to know for certain if it is cancer.

Wishing you all the best with this!

Diagnosis (from main OCF pages)
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#148452 - 04/18/12 05:28 AM Re: Lump INSIDE Tongue [Re: honeybee77]
braziliangirl82 Offline
Senior Member (100+ posts)

Registered: 01/26/12
Posts: 111
Loc: br
_________________________
December, 2011 - T1N0M0 SSC Oral Tongue sugery (Dec 07, 2011). Partial glossectomy, primary closure. Selective Neck dissection, all 57 nodes free. 29 at diagnosis, no risk factors at all. No smoking, drinking and HPV negative. Can you explain? I can't.

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#148455 - 04/18/12 08:10 AM Re: Lump INSIDE Tongue [Re: braziliangirl82]
bethers0808 Offline
Gold Member (200+ posts)

Registered: 05/13/10
Posts: 224
Loc: MN, USA
hello there. To try to help you answer some questions. My cancer was in my tongue, and didn't have any signs on the outer parts of my tongue until it made my tongue swell up against my teeth and that was when I noticed something was wrong, otherwise, I wouldn't have noticed. I saw my dentist and an oral surgeon for 5 months and they both swore up and down that it wasn't cancer until the biopsy the oral surgeon did that was for "precancer" came back as cancer stage 3. Mine was in my tongue, almost near the middle but more on the right side and near the back part of my tongue.

When they did the biopsy, my tongue was pretty tender for quite a while, but I was able to go on with life as usual, except for eating, I had to eat softer stuff for a while, but like I said, mine was near the back and pretty big, and I had a lot of pain before they biopsied, so it only intensified the pain I already was experiencing, so if you do get a biopsy, your experience may not be as bad as mine was.

Is your spot causing you any pain?

Also, if you saw that oral surgeon already, one or more times, and he/she was still insisting there wasn't anything there, you can try to see them again, but it may be wiser to try to see someone else that has more experience with oral cancer.

As for scans, it has been my experience that they would rather biopsy before scan, but that may not always be the case. I would just try to see someone who has knowledge and experience with oral cancer, an ENT or oral surgeon. I see an oral surgeon who is a head and neck cancer specialist now and he is amazing.

I hope that you get answers to your questions soon and hope that this isn't cancer, but if it is, this group is a great group of supportive people! will keep you in my thoughts!
_________________________
25/female at diagnosis
Dx;stage 3 SCC tongue 03/25/2010
Surgery 04/13/2010
Trach,ng tube, peg feeding tube
Hemiglossectomy, right side neck dissection, 40 lymph nodes removed. Free-Flap transplant to tongue.
30 rounds IMRT ended July 15,2010

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#148456 - 04/18/12 11:01 AM Re: Lump INSIDE Tongue [Re: bethers0808]
honeybee77 Offline
Member

Registered: 04/17/12
Posts: 13
Loc: Missouri, USA
Thank you so much for your answers! No, I have absolutely no pain with this lump. I found it totally by accident. It is small, perhaps pea sized or slightly smaller. It can't really be felt by just grabbing the tongue & pressing, which seems to flatten the lump a bit. You have to try to actually grip it in your fingertips, if that makes any sense.

Was your lump much larger than that? I did also read more cancers were either on the sides of the tongue or the back. Mine is quite close to the tip. I know there are glands in that area, so I am hoping it is a cyst or gland blockage but I'm still worried.

My lump also seems to change in size, although very slightly. I have a habit of feeling it too much, which sometimes seems to 'deflate' it a little. It's always there though. Someone suggested infection, but I have been on antibiotics for an upper resp infection and it had no effect on the lump.

Thank you again for your insights.
_________________________
queenbee

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#148458 - 04/18/12 11:43 AM Re: Lump INSIDE Tongue [Re: honeybee77]
AnneO Offline
Gold Member (200+ posts)

Registered: 12/30/10
Posts: 289
Loc: Kansas
Hi,
No one here is going to be able to tell you for sure what you have from our online conversations unfortunately. I'd quit squeezing it to deflate it. You live in Missouri, I'm in Kansas, but I am familiar with Missouri. Do you live near Kansas City or St Louis? If you are close to either of those places you can at least find someone who is more familiar with oral cancer.
Best,
Anne
_________________________
SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of 10/2015

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#148462 - 04/18/12 12:02 PM Re: Lump INSIDE Tongue [Re: bethers0808]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
Hi there bethers answered your questions... But I will confirm what she said. My tongue was red... No ulceration, no white, just red. A biopsy of the area came back inflamed tissue - however if the ENT had taken the time to palpate he would have felt a lump inside my tongue. I thought it was scar tissue from where I'd had a piece of thickened skin removed ten years earlier, but no it was a tumor - definitely see someone who knows oral cancer. You can go see your oral surgeon again, but I'm not sure if it's a waste of time and money since he has already decided its nothing. Sometime because you're young the don't ntertain the idea (it's an old mans cancer usually involving heavy smokers and drinkers) Ipoint in fact I met with my SO on Monday, he sent his fellow in to examine me (a new guy from Switzerland - ) an the first words out of his mouth were - so how many cigarettes do you smoke a day? He almost fell off his chair when I told him I've never smoked, never drank, and I'm almost a vegan... It's those preformed beliefs that they sometimes have a hard time getting past. Hugs and good luck... And three hours is not fun, but it's worth it for your peace if mind and you're worth it.


Edited by Cheryld (04/18/12 12:05 PM)
_________________________
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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#148466 - 04/18/12 04:05 PM Re: Lump INSIDE Tongue [Re: Cheryld]
honeybee77 Offline
Member

Registered: 04/17/12
Posts: 13
Loc: Missouri, USA
I think I found a fantastic place in St Louis that has doctors that specialize in head and neck oncology. That's what I need, right?

Does anyone know of a connection between glossitis (loss of tastebuds) and oral cancer? Glossitis is the only thing I've been diagnosed with definitively regarding what's going on in my mouth.
_________________________
queenbee

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#148472 - 04/18/12 04:52 PM Re: Lump INSIDE Tongue [Re: honeybee77]
AnneO Offline
Gold Member (200+ posts)

Registered: 12/30/10
Posts: 289
Loc: Kansas
If you are close to St Louis, Barnes hospital should have a ENTs on staff who see oral cancer patients. Yes, ENT oncology should be what you need.

I don't know any names there, but sounds like a good stop for you. We might have someone on the forum that has seen a doctor in St Louis, I do not know.
Best,
Anne
_________________________
SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of 10/2015

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#154216 - 09/06/12 11:28 PM Re: Lump INSIDE Tongue [Re: honeybee77]
calvin123 Offline
Member

Registered: 09/06/12
Posts: 3
Loc: Oregon
Hello. I have the same problem as honeybee. PLEASE let me know what happens

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#154224 - 09/07/12 03:18 AM Re: Lump INSIDE Tongue [Re: honeybee77]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
Calvin read my reply to you in the other posting. Take care!
_________________________
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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