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#158211 - 11/28/12 02:20 PM Extreme Pain After Biopsy - Very Concerned
emilyp Offline
Senior Member (100+ posts)

Registered: 12/09/11
Posts: 112
Loc: New Orleans, LA
A couple days before Thanksgiving, I noticed the floor of my mouth in between the back of my tongue and teeth was painful to touch, eat, and even talking was a little painful. After the pain only got worse, I went in to see my ENT on Monday. She could barely see anything, and said it just looked like a little ulcer, however, given the amount of pain I was in she went ahead and took a biopsy to be on the safe side.
I woke up Monday night in extreme pain, and ever since then it is super painful for me to open my mouth, eat, talk, or even touch the underside of my chin. The pain doesn't feel topical, it is more coming from underneath, which is very swollen.

I spoke with my ENT yesterday and she had no idea why I am in so much pain, she took a very shallow sample. She also prescribed me to some antibiotics, in case it is infected. I started taking them yesterday, but the pain has not gotten any better and I am starting to get concerned. My speech is sounding like it did months ago because of the swelling and pain.

Has anyone experienced anything similar after a biopsy? my last biopsy was on my tongue, and i do not remember it being nearly as painful. I am wondering if maybe the location she took it from is more sensitive? I was extremely swollen and in a lot of pain after my surgery (which is similar to what this feels like), but that was also a 9 hour surgery where they took out half my tongue. I have always had a very high tolerance for pain and have only taken pain meds when extremely necessarry, and this is to the point where i have taken out my pain meds from radiation.

Any advice would be greatly appreciated!
_________________________
Emily - 24 years old at diagnosis
HPV-, no risk factors
T2N2b Squamous Cell Carcinoma
Left oral tongue, poorly differentiated
Hemiglossectamy, reconstruction, partial neck dissection
30 Radiation treatments, weekly chemo (cisplatin)
1/13/12 last day of treatment
Diagnosed October 2011

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#158212 - 11/28/12 03:25 PM Re: Extreme Pain After Biopsy - Very Concerned [Re: emilyp]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8314
Loc: PA
Emily, is the pain from the biopsy or are you still hurting from the original pain? From your explanation it sounds to me like you were in extreme pain prior to the biopsy and you still are hurting. Its completely normal to hurt after having a biopsy.

I will throw a couple ideas out there for you, they may not be relevant to your situation but you never know. Did you have any teeth removed in this area? Ive had teeth removed and have had tiny shards of tooth fragments that have been stabbing me under the surface which caused me to be in agony. I never saw anything there but my ENT found them after very close examinations. Is it possible that it could be a piece of a tooth or even a piece of your jaw? Ive also had tiny fragments of my jaw stabbing me which was very painful.

Never know what it could be thats causing it to hurt so much. I hope it turns out to be nothing serious. Your doc did the right thing by doing a biopsy. If you need stronger pain meds to get you thru this painful time, call your doc and tell them you need a prescription for something strong. Nobody benefits from being in pain. Try not to worry!

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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#158216 - 11/28/12 03:43 PM Re: Extreme Pain After Biopsy - Very Concerned [Re: emilyp]
emilyp Offline
Senior Member (100+ posts)

Registered: 12/09/11
Posts: 112
Loc: New Orleans, LA
Thanks Christine! Before the biopsy, the pain was different... it was more on the surface, but almost felt like a stabbing pain down in the tissue. Also, I could pinpoint where the pain was coming from. Now, the biopsied site is not really the painful part, but its the tissue under my jawbone and chin that causing pain... any movement to my head or mouth causes pain... i can even feel it when i walk. it's very bizarre.

At first, my doctor thought it could be exposed mandible because the area felt rough. but when i went back in to get the biopsy, she said she didnt think it felt like that anymore. I am thinking it must be an infection, and maybe fluid that is causing the swelling. I guess I will give it a couple days and then if the antibiotics don't work I will see a doctor. My biopsy results should come in tomorrow, so hopefully they will come back negative and i won't have to worry so much. I am just concerned that the original ulcer really didn't feel like a tiny ulcer, despite how it looked. I guess we will see though! i'll let you know when i find out
_________________________
Emily - 24 years old at diagnosis
HPV-, no risk factors
T2N2b Squamous Cell Carcinoma
Left oral tongue, poorly differentiated
Hemiglossectamy, reconstruction, partial neck dissection
30 Radiation treatments, weekly chemo (cisplatin)
1/13/12 last day of treatment
Diagnosed October 2011

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#158220 - 11/28/12 04:04 PM Re: Extreme Pain After Biopsy - Very Concerned [Re: emilyp]
PaulB Offline
Patient Advocate (old timer, 2000 posts)

Registered: 07/06/12
Posts: 2457
Loc: NYC
I had several similar experiences with my back molar, gums that was infected in 2010 after radiation. Needed the hyperbaric, antibiotics, but never had the tooth extracted. It flared up a few times since, needed biolsy on tongue as a precaution, and most recently last month during treatment, which was examined, CT scan taken, but this time was concluded to be mucositis, and ulcer from biting my cheek, but I still need to take the tooth out at a later date. Oral Antibiotics may take a while to work. Rinse rinse with baking soda, leave out the salt if it burns, use magic mouth wash, and avoid irritating foods like spices, acids, sharp texture or difficult to chew foods, so not to irritate the area or cause more pain. Good luck with the biopsy.



Edited by PaulB (11/28/12 04:06 PM)
_________________________
10/09 T1N2bM0 Tonsil 48
11/09 TPF IC In hospital for 187 days
07/10 NED
09/10 Met
09/10 Eye Surgery
02/11 35 IMRT 70Gy
06/11 30 HBOT
07/11 NED
09/11 Met
10/11 Radical ND
02/12 NED
04/12 Met
05/12 Met
06/12 Selective ND PNI LVI
07/12 Met
08/12 Radical ND HD-IORT 12Gy Pec flap
10/12 25 IMRT 45Gy Taxo Erbitux
02/13 NED
08/13 Met
10/13 Selective ND
10/13 TBO & Angiography
10/13 Radical ND Carotid removed HD-IORT 10Gy PNI LVI
12/13 25 Proton Therapy 50Gy 6 Carbo
05/14 NED
07/14 30 HBOT
08/14 EEG EMG MRI
09/14 Teeth Extr





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#158221 - 11/28/12 04:22 PM Re: Extreme Pain After Biopsy - Very Concerned [Re: emilyp]
Cheryld Online   content
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4840
Loc: Toronto canada
HI there... sorry you're going throught this again. I had a similar sore that caused me pain I noticed it on a friday after eating out. Then had the usual panic attack over it. I called that monday and asked for an appointment with my SO (who I trust) I figured it would be a two week wait to get in - if it was gone by then then great... but if it was still there then I would have a valid concern and it would be dealt with (let me tell you it was painful) -well I was wrong. Firstly I got in two days later which was great but I didn't see my SO just his fellow who I don't know at all and definitely don't trust particularly because he blew me off saying it was likely an ulcer or injury from having bitten it... NOT.. the location was all wrong for a bite so then I made an appointment with my local back up ENT and had to wait two weeks. When I finally saw him he said it was very small didn't look like anything he would be concerned with. Thought it was an ulcer. Prescribed Oracort and told me to apply it as directed then come back if it didn't heal in two weeks. I did as recommended and used it as directed which was once at night... didn't help much though it seemed to get better slowly. Since it seemed to be improving I took another tact...(he had said he would biopsy it if it didn't improve) I brushed my teeth after each meal, rinsed my mouth to too, applied the oracort and stuck to NON irritating foods... soft - non acidic - basically. it took 4 darn weeks to heal!! but it worked.

Right now your mouth is still damaged from radiation. any cuts or injuries or spicy and acidic food can really hurt like the devil (and cause ulcerations). Try keeping the area super clean, and be gentle with it.
It may take a long while to heal but it will. Mine looked small, but the deep part was small. it had to heal from the inside out by the time it did it had to have been about 4mm long. I still get irritation and sore patches from eating and I'm almost 19 mos out of treatment etc.

Hopefully it's nothing. I am like you - not super sensitive to pain but mouh sores can hurt like the devil.

YOu're dr. was right though...based on your history better safe than sorry.hugs...
_________________________
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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#158275 - 11/30/12 12:03 AM Re: Extreme Pain After Biopsy - Very Concerned [Re: emilyp]
emilyp Offline
Senior Member (100+ posts)

Registered: 12/09/11
Posts: 112
Loc: New Orleans, LA
Glad your ulcer has gone away Cheryl!

The pain has gotten better, I think I might have had an infection. I got on antibiotics and I can at least talk now, which is a big improvement to how I was feeling!

I also got the results back of the biopsy, which came back as mild dysplasia. My doctor told me she got all of it, but it worries me that it just popped up out of nowhere (I only had the pain in my mouth for about a week when I got it biopsied). My doctor told me that from here on out any ulcer I get that lasts more than a week will need to get biopsied. The fact that this precancerous lesion came up just a year after my original diagnosis worries me that these things are going to keep popping up for the rest of my life until I don't catch it in time and have a recurrence. I know this is a very morbid thought, I am very happy with my results, it just makes me think. I am 25 years old, its hard to enjoy/move on with life when I have to worry that any ulcer that pops up is cancer.

But, no cancer for now so good news!
_________________________
Emily - 24 years old at diagnosis
HPV-, no risk factors
T2N2b Squamous Cell Carcinoma
Left oral tongue, poorly differentiated
Hemiglossectamy, reconstruction, partial neck dissection
30 Radiation treatments, weekly chemo (cisplatin)
1/13/12 last day of treatment
Diagnosed October 2011

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#158277 - 11/30/12 12:11 AM Re: Extreme Pain After Biopsy - Very Concerned [Re: emilyp]
Bette Offline
Senior Member (100+ posts)

Registered: 10/28/12
Posts: 118
Loc: Central California
Emily,

You can't look over your shoulder for the rest of your young life to see if the disease is there. Learn to be diligent in watching for the signs. If you get it again, they will treat it again. Trust me when I say you have to look to the future and live as if you will be cancer free for life.
_________________________
Bette/CG to husband Reggie 66

dx 1: SCC Soft Palate (12/06)
tx: chemo and rad

dx 2: SCC 6 cm tum rt. vocal chord (12/09)
tx: total laryngectomy with stoma, 2 nodes

dx 3: SCC 4 cm tum BOT (10/16/12)
Tx: partial gloss w/ mod deck dis 4 nodes incl. part. pharyngectomy

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#158283 - 11/30/12 03:31 AM Re: Extreme Pain After Biopsy - Very Concerned [Re: emilyp]
Cheryld Online   content
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4840
Loc: Toronto canada
Ditto what Bette said. Be diligent and look to the future.
_________________________
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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#158296 - 11/30/12 01:13 PM Re: Extreme Pain After Biopsy - Very Concerned [Re: emilyp]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8314
Loc: PA
Dysplasia very often does return. But the good thing is that it does not always turn into cancer.

Please try to move on. Try to think of this a different way. You dont "have to worry that any ulcer that pops up is cancer". It is a choice to worry. By allowing yourself to focus on "what if" it makes you scared and upset. If you absolutely 'must' think about this, at least only allow yourself a few minutes to contemplate things and then move on to a more pleasant subject. It took me a while to learn how to do this but I live my life without worrying about recurrences. Worrying will never change anything, it will only make a person upset. In my situation, a recurrence means I will die as Ive already had OC 3 times and I cant get thru round #4. I already know this and have accepted it so I go about living the very best life I can and not allow my mind to stray over to the "what if's". With practice you can do this too. If you have beaten OC, you can do anything smile At 25 years old, you have your whole life in front of you. Live it up!!!!


Edited by ChristineB (11/30/12 01:16 PM)
_________________________
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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#158310 - 11/30/12 04:18 PM Re: Extreme Pain After Biopsy - Very Concerned [Re: emilyp]
emilyp Offline
Senior Member (100+ posts)

Registered: 12/09/11
Posts: 112
Loc: New Orleans, LA
Thanks for the advice! I know these things, but it is easier said than done smile

I just don't want to be blind-sided again, so I guess I subconsciously keep telling myself that the cancer is going to come back so I am not surprised if it does. I know this is no way to live, I need to move on with my life! I really admire your outlook and strength Christine (and everyone else, for that matter!). I think with time I will learn to accept everything and not worry about the what if's... this recent scare just really put my chances of recurrence into a reality. But, I am very diligent about calling my doctor about every small thing that comes up... luckily, my aunt is a fantastic ENT so I have full access to a doctor at all times!

I will be ok... I just need to keep reminding myself that smile
_________________________
Emily - 24 years old at diagnosis
HPV-, no risk factors
T2N2b Squamous Cell Carcinoma
Left oral tongue, poorly differentiated
Hemiglossectamy, reconstruction, partial neck dissection
30 Radiation treatments, weekly chemo (cisplatin)
1/13/12 last day of treatment
Diagnosed October 2011

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