| Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | So about how long does this throat pain last after radiation. I can swallow just fine, but if I put anything other than water down my throat it burns really bad. The pain has also sihifted from just the right isde to both sides of my throat now. I am still on the 75 patch for the ear pain. The ear pain also also gone from jus the ride ear to both ears. Is that something I should be worried about? I have my Pet scan in two weeks and am waiting on pens an needles because the right side of my tongue iss till swollen and hurts to move hardly at all.
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 | Inflamation will cause a PET scan to light up. Go to your doc and make sure that you are healthy enough for a PET scan before you get one. It would be awful to get one nad it lights up all over cuz of the problems yo are having. You would be worried sick thinking you had cancer again.
Normally a PET scan is given a minimum of 3 months after you finish rads. Most docs will wait til 4 - 6 months before they do one. PET scans are very costly so it doesnt make sense to do one so close to you finishing tx and having another biopsy healing. What were the biopsy results? 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) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Those results were negative, and we were thankful for that. I see my ENT again on Monday. I will talk to him about it. I do know that my RO checked me a few weeks ago and said my tongue looked better than it had two weeks after treatment was pretty much healed. I am still having a lot of pain. I can handle the pain if I know I am cancer free.
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 | Congrats on being cancer free!!!!! With everything going on with your mouth and throat, you may want to make a list so you dont forget something. I always make a list of things I need to talk to the doc about or I would forget 1/2 of what I wanted to say. Best of luck Monday. 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) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | I wil definitely have a list. The throat pain really worries me as it hurts just to have water touch it and then shoots to my left ear. This is new in just the last few days. I am just trying to be patient and wait for the scan. So hard to do. I am just trying to live my life, but every little pain worries me.
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: Nov 2009 Posts: 212 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Nov 2009 Posts: 212 | Hi Angelia, I am 6 months post and just recently have hit the state where my throat pain is low enough I do not take anything for it. I was talking 1/2 percoset for it in Feg, It is still bothersom but now it is down to "just one of those little things"
Steve
70 male, athlete...again SSC of undetermined orgin , early july 09 40 tx radiation, 8 chemo cisplatin and ebuterx finished TX in mid Sept 09 Clear at the 6 year mark! Back to swimming, biking and running! just a tad slower never regained my weight, even when I eat lots and lots, just a skinny guy now
Just way glad to be seeing the green side up!
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Got a good report from my ENT. He said he did not see anything and it may still be from the radiation. I am just having a difficult time believing that nothing is wrong.
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 2008 Posts: 148 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jun 2008 Posts: 148 | Just remember it will take months for your body to heal and rid itself of the radiation that has been beamed in. Good news is that you are recovering. I am surprised you are having a PET scan so soon after all this radiation. My first one came one year after tx ended. Good luck!
Bill . . . SCC - originated in right tonsil, drifted into neck ( 28 lymph nodes removed - one positive ). Radical neck dissection in September 07, completed 34 radiation tx on January 4, 2008. Used Peg. Non smoker, 61, good shape, no previous health issues. Second year PET scan - "all clear".
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I have the same feelings Angelia. But both my ENT and Oncologist told me the same about severe rad burns and both agree that it will just keep getting worse. I will say the Methadone takes care of most of the pain and makes you feel like you had something illegal. LOL.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jun 2009 Posts: 440 | I agree with Steve, being 6 months out as well, my throat still burns as well as my tongue but it has gotten better over time, hopefully soon, I won't have the burning sensation anymore. Good luck with your scan, I'll be waiting to hear the good news!
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0 Elizabeth, 33, mother of 3 girls (4,7, &8yrs old) 3 rds of chemo(Carbo/Taxol) Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube. 30 rds of rads with weekly cisplatin SCANS ALL CLEAR! OCF Regional Coordinator of San Antonio Walk
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