| | Joined: Nov 2007 Posts: 24 Member | OP  Member
Joined: Nov 2007 Posts: 24 | Well I'm once again in panic mode. Last month, I believe I bit the replaced side of my tongue hard while eating something cold. Noticed pain in the tongue pretty quickly, not like something that has been getting worse. Have spells of pain that come and go, and also have been getting what my Dr at Dana Farber referred to as "zingers"--brief ear aches that last a few seconds. Had these prior to my first diagnosis just over 4 years ago. The pain in my tongue is near the same location as the first occurence, and at the base of tongue and floor of mouth. Generally have more pain in the mornings, and some points during the day don't even know it is there. Fortunately, I have a 6 month follow-up with Dana Farber in just over a week (2/28), and hopefully they can set my mind at ease. Am wondering if I need to call Dana Farber and let them know I am experiencing some issues prior to my appoint, in case they think I should have a CT scan or any other tests while I am there.
It is amazing how much more difficult this is now then when I was first diagnosed. Mostly that my oldest son was just 4 months old, now he is 4 and half years old, and I have a second son who is 1 and a half years old. Hate the though of them having to see me go through treatment or worse.
Age 27: Diagnosed 11/1/07 with Oral cancer localized in the left side of my tongue & 1 lymph node. Upper Neck Disection Surgery 12/17/07, removed left side of tongue and a few lymph nodes. Post surgery treatment: 30 days Radiation, 4 Treatments of Cisplatin. Completed treatments 3/27/08.
| | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | I had the same scare not too long ago. Saw my RO on Monday and sent me for a PET/CT on Thursday, and all was clear. Told me the pain was just a side-effect of radiation. I too have those "zinger" ear pains and tongue pain like that. I am hoping it is nothing, and your Drs can put your mind at ease. I know I still have to go see my ENT so we can figure out why the pain is getting worse on my tongue.
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: 6 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: 6 | We all get the jitters around check up time. I think you are feeling some anxiety due to it being time for your check up. After going thru surgery and radiation its only natural to be afraid of ever having to go thru that again. Try to keep yourself busy to keep your mind off worrying. Since you bit your tongue thats probably whats going on. Dont you get scanned before you get your check ups? If that isnt what your doctors normally schedule then it wouldnt hurt to call your doc just in case they would want this done prior to your exam. Hope its nothing. Best wishes!
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: Nov 2007 Posts: 24 Member | | OP Member
Joined: Nov 2007 Posts: 24 | Thanks for the encouragement. My Dr. at Dana Farber didn't want me to have too many CT scans post radiation & chemo, as he said the finding would be greatly skewed with my body trying to recover. Next month (3/27) will be 4 years since my last treatment of radiation.
Age 27: Diagnosed 11/1/07 with Oral cancer localized in the left side of my tongue & 1 lymph node. Upper Neck Disection Surgery 12/17/07, removed left side of tongue and a few lymph nodes. Post surgery treatment: 30 days Radiation, 4 Treatments of Cisplatin. Completed treatments 3/27/08.
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Yeah!!! That's so great novalty
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
| | | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2011 Posts: 596 | Novalty,
Congrats of coming up on your 4-year anniversary. I'm sure as it is a good thing, you are probably getting anxious as the date approaches. Biting your tongue probably just "woke up" that area that is now less resilient to trauma since your rads/chemo. Of course, it's easier for me to say this and believe it to be true than for you. That's the way it is for all of us. So, hang in there and I hope your check up goes well.
As an aside, I live in greater Boston and have my SO at Mass Eye & Ear. I was pregnant at the time of diagnosis and surgery. It seems that we have similar histories. The fear of being ill again and not being able to take care of our kids will be ever- present, I'm sure. It's really hard. We all remember how hard it was just to take care of ourselves when we were sick. But you are moving farther out from your last treatment and the time for being declared "cured" is getting closer. I wish you all the best and I'm glad that you've come back here for support!
Take care,
Kerri
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | | Joined: Nov 2007 Posts: 24 Member | | OP Member
Joined: Nov 2007 Posts: 24 | Thanks everyone for the well wishes and support. I had my appointment with my Dr. at Dana Farber. After a check up and the usual scoping, my Dr. feels the pain is from the bite trauma, and said that he expected the recovery time to be long as the tongue has swell a slight amount which causes me to bite it infrequently. He advised that if I was to start seeing any blood, have a canker sore that wouldn't go away after a week or an ulcer that is when I should be concerned. He said he didn't have any concern that the pain I am experiencing is due to a recurrence. What a sigh of relief.
Age 27: Diagnosed 11/1/07 with Oral cancer localized in the left side of my tongue & 1 lymph node. Upper Neck Disection Surgery 12/17/07, removed left side of tongue and a few lymph nodes. Post surgery treatment: 30 days Radiation, 4 Treatments of Cisplatin. Completed treatments 3/27/08.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Paul, congrats on the good news! Im sure you are greatly relieved. Hope your tongue heals quickly. Be well!!!
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: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Yippeeeeee for you Paul. Happy Dance!
julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2011 Posts: 596 | That's wonderful news, Paul! Now you can relax and enjoy!
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
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