| Joined: May 2009 Posts: 10 Member | OP Member Joined: May 2009 Posts: 10 | Suzanne, your post made me chuckle. I kept fogging up the lense trying to get the pictures, and my camera was going crazy! =P I took a bunch more, later than these. I think the new ones are a bit more revealing, but not by much. And besides, I'm not sure people want to stare at pictures of the inside of my mouth all day, hehe. =P | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | I just want to let you know a lot of people, even my Drs. have said that most cancerous places are not painful, mine was extremely painful to the point that I could not chew anything solid, so I knew something was wrong. Even though most time they are not, there is a chance it could be. I am thankful I had pain otherwise I would not have caught mine so early. Even though you don't like it know, be thankful there is pain so would know to get it checked out. Good luck and keep us posted.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: May 2009 Posts: 10 Member | OP Member Joined: May 2009 Posts: 10 | Walknlite, I am glad you brought that up specifically. I have pain in mine, and the pain does radiate into my ear and neck when it's bad (like right now). Advil helps with the ear and neck, but the local pain is always there. It's really bad today because the doctor poked it so much yesterday.
I'm wondering--when yours hurt, was it a raw kind of pain, or did it feel like it was hurting from the inside out and more kinda pressure sensitive? Mine is both right now, but I do have a sore there. So the raw pain seems to be the sore, and then the lump itself hurts if you press on it.
Called the dentist today and explained my issue, and they said not to come in but to make an appointment with an oral surgeon instead. They gave me a referral and I have an appointment on Monday morning (I couldn't believe they got me in so fast). Wish me luck, everyone.
Off to fill my lidocaine prescription because my mouth is hurting a lot today. | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | That is exactly how mine was. I had white patches on my tonugue for years and no one seemed bothered by them. So I never thought anything of this. This past Feb. out of the blue I began to have pain when I ate. I looked in my mouth and saw a small lumo under my tongue. It was extremely painful to the touch and was hard. The dentist said that the fact that it was hard and not moving concerned him. He said he had hope because I was in pain, but that I needed a biopsy ASAP. No one else believed him. You make sure you get that biopsy. It was not until I began to have horrible ear pain asked for pain meds for it, did someone think something needed to be done. This thing came out of no where and grew very fast. It was always painful when I had it looked at because there were pressing on it to find out what it was. Everyon told me iyt was just a sore. The orak surgeon I went to said that it looked like a drill fell in my mouth when I was having dental. My dentist would not touch me until I got this thing out. I have not had dental work in over 2 years. I would have remembered a drill falling in my mouth. If this oral surgeon won't do it, do not stop there. Contact an ENT. You and your body knows when something is wrong. Do not let them drag you along. I did not get anything done for two months. By the time my ENT decided to do the surgery, I was only swallowing liquids. MY ear hurt constantly, and my head hurt to swallow. It still does. I am hoping that is because of the surgery and I am still healing, and not that there is still a tumor in there. Yes, you symptoms are exactly like mine were.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Kyn....one thing to know about oral cancer, you will learn so much as you go. --- Everyone is different! --- Just because someone else has something similar doesnt mean its the same as what you have. Same goes for side effects, we all react differently to meds and procedures.
A dentist wont do a biopsy. You should get an appointment with an ENT or oral surgeon. ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr 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 xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Christine is right. Everyone is different, and has different experiences and different symptoms. I have learned that just the few days i have been a member. No two people have the exact same symptoms.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: May 2009 Posts: 10 Member | OP Member Joined: May 2009 Posts: 10 | Thank you guys. Yeah, when I called the dentist I said, "I want to make an appointment with someone who can do a biopsy because etc. etc." And they said, "Well, she's done biopsies before, but for your thing you should go see this oral surgeon instead." So I see the oral surgeon on Monday morning.
I totally understand what you guys are saying about how everyone's experience is different. I also have epilepsy and have found that to be very true with epilepsy as well, so it's not surprising. | | | | Joined: May 2009 Posts: 10 Member | OP Member Joined: May 2009 Posts: 10 | Well, I'm a little disconcerted about the fact that the Lidocaine helps the pain in my mouth for a short (a very short) time, but it has no effect on my ear/neck pain. I thought the ear/neck thing was just like a weird nerve reaction of the pain in my mouth, but now I don't know. I thought numbing my mouth would make it all stop, but it doesn't. =( Advil still works, but it's becoming less effective (probably because I've been taking so much of it). It wears off pretty quickly now. | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Hav your Dr. prescribe you something stronger. I take Darvocet for pain.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Mine was VERY PAINFUL!!! It hurt so bad. I take Ultram for my pain and it works great for me.
You took those pictures yourself?!? That is impressive. My dentist took mine:) I can turn my tongue and open wide like a pro.
Suzanne *********** T1 SCC on right side of tongue Age 31...27 when diagnosed 4 partial glossectomies No chemo or radiation Biopsy on 2/2/10-Clear Surgery needed again...no later than April 2011 Loving life and just became a mother on 11/25/10 It's not what we CAN'T do..it's what we CAN do:)
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