#28363 11-15-2006 01:13 AM | Joined: Jan 2004 Posts: 64 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Jan 2004 Posts: 64 | Hi all,
The last few days I have experienced a severe pain in my neck, midway down my jugular that hurts to the touch. When I press it, the pain is felt in the back of my throat and through my ear. My jaw also hurts on that side. I have been taking vicodin for pain, tylenol stopped working. I had an appointment with my ent in sept and all looked good. I am 4 years out from end of treatment. I have never felt anything like this. I just got over a few bad head and chest cold and have residual congestion. Does this sound like an infection or something worse? Please help.
Kelley
SCC tonsil(left) with contralateral mets. Modified right neck disection August, 2002. 33 rads(62 gy)both sides of neck and 3 cycles cisplatin completed October 25, 2002. 34 yo at time of diagnosis
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#28364 11-15-2006 04:54 AM | Joined: Sep 2006 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2006 Posts: 493 | Kelley,
I'm not a Dr so I won't attempt to Dx. I think you should call your ENT and get in to see them. I wouldn't hesitate on this.
Tim Stoj
60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
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#28365 11-15-2006 06:03 AM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | I would see your doctor but it sounds like an infection of some sort to me. Let us know and I'll keep my fingers crossed for you.
Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#28366 11-15-2006 07:13 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Even if it is an infection, why would you want to try to treat it yourself? Whatever it is, I would RUN, not walk, to my ENTs office and get it checked out ASAP. Let's hope for the best. Keep us posted.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#28367 11-16-2006 12:26 PM | Joined: Jan 2004 Posts: 64 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jan 2004 Posts: 64 | I saw the ent today and after scoping and palpating my throat and neck, he said once again that everything looked good, that what i was feeling was not related to my treatment or disease. He said I have an inflammation around my carotid and gave me a medicine for, what i believe, migraines. It wasnt my regular surgeon that I saw however an ent regardless. I saw my surgeon in sept, and asked when my next ct was and he said he wouldnt send me for anymore unless something was wrong, which he found nothing. His school of thought is pet/cts the first 2 years, which i talked him into one the third year, and then chest xrays every year. He talked about radiation exposure, blah blah blah. He also assured me, as he always does that he would be throwing me a party at 5 years and that physical palpation with me is easy because i am so thin. Do I feel better? Yea, but...!! Do I take the meds and see(which i'll do anyway) or do I insist on annual ct's? I dont feel as bad, i'm sure my mental state exacerbated the condition. But my ear, neck jaw and throat still hurt. Thanks for listening guys. I appreciate your feedback and your warm wishes. These episodes(as I call them) are fewer and further in between but when they come, it consumes me sometimes. I'm sure most of you understand that, so thanks again.
Kelley
SCC tonsil(left) with contralateral mets. Modified right neck disection August, 2002. 33 rads(62 gy)both sides of neck and 3 cycles cisplatin completed October 25, 2002. 34 yo at time of diagnosis
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#28368 11-17-2006 09:33 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Annual MRI's are a better choice over a CT (at least that is what my CCC orders) . Annual chest x-ray is pretty much standard.
One CT = 6 months of background radiation level.
I am 4 years out as well and have more congestion then I had pre Tx. I also have neck spasms from radiation damage, which I take Valium and Codeine for.
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#28369 11-17-2006 01:21 PM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Gary,
Please explain the importance of your sentence...One CT = 6 months of background radiation level. ?
Thanks,
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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#28370 11-17-2006 02:26 PM | Joined: Jan 2004 Posts: 64 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jan 2004 Posts: 64 | Thanks Gary. I see my mo next month and will talk to him regarding having an mri. I believe what i am feeling are some sort of neck and back of throat spasms. I read something about trigeminal and glossopharyngeal neuralgia and describes my symptoms, however mine were constant. I think it is called atypical. Well, thats my diagnosis, and im sticking to it!!
Yea, what do you mean about background radiation level?
Kelley
SCC tonsil(left) with contralateral mets. Modified right neck disection August, 2002. 33 rads(62 gy)both sides of neck and 3 cycles cisplatin completed October 25, 2002. 34 yo at time of diagnosis
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#28371 12-08-2006 04:52 AM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Dec 2003 Posts: 207 | Hi Kelley, I just ran across your post as I'm having similar symptoms myself ... I've always been somewhat sore and tender on the opposite side of my neck from where my surgery was. Sometimes it flairs up, I go see someone, and they always come back and say everything looks and feels good.
One ENT said a lot of the soreness is because my head is "unbalanced" because I have muscles on one side and lack some on the other.
But this week, the pain has seemed more acute than usual. Monday night, even had shooting pain from my neck into my ear that made me wince everytime I had an "episode"... Went to my general doc this week and he said he felt a swollen lymph node, which of course has me completely freaked out. But he said the fact that it is tender to the touch is a sign that it's likely from the lymph node doing its job catching an infection and not something malignant.
But, I'm going to see an ENT today anyways... sorry to hijack the thread but was glad to see this on here... I'm 3+ years out from initial diagnosis and 2+ years from final treatment, so this has kind of jarred me back into some old feelings/emotions/fears again...
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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#28372 12-08-2006 05:52 AM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Hey, it's great to hear from you again!
I have tons of trouble with my neck, and it seems to get worse by the month. I have alot of pain and it's something I'm aware of every minute of the day, the closest thing to a disability that I can think of from this cancer. And now it's both sides of my neck that have pain and spasms and are tight. I also will have pain from my neck to my ear if I've been really active that day. I feel "unbalanced" in my head and neck area. I love going to watch high school basketball games, one of my very favorite pastimes, but I now have trouble sitting through a game because my neck tightens up. Something about the way I have to hold my neck while sitting in the bleachers. Can't win, can we? First I can't eat the popcorn and hotdogs like I loved scarfing down in past years.........now it's difficult to sit period, lol. But..........I'm there, watching the game, screaming at the ref and crying when the under dog wins............so what more can we ask for?
Hope you find out all is well.
Love,
Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#28373 12-08-2006 05:58 AM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Dec 2003 Posts: 207 | Good to hear from you, too, Minnie ... actually I've gotten along a lot better in the food department ... probably fattened up too much ... cna even drink some mountain dew and eat some (mildly) spicy foods (though one of co-workers cracked up laughing at me when I broke out in a huge sweat while trying to eat some spicy BBQ awhile back -- he still kids me about it)...
I guess I don't help my own cause by lugging around a big old heavy camera to all the sporting events I cover at my current job. Or by working at a computer other parts of the day. And I have a 2-year old daughter that can't resist "carrying Daddy" (i.e. letting daddy carry her) ... she weighs like 30 pounds!
Unfortunately, I can't yell at the ref in my position as a sports photog, though at times it's tempting... take care ;-)
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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#28374 12-09-2006 04:04 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | What kind of camera do you use? I have a nice Cannon Rebel but it stinks in the school gyms. I need something that's good for sports.
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#28375 12-09-2006 10:38 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 |
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#28376 12-11-2006 02:50 AM | Joined: Oct 2006 Posts: 248 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2006 Posts: 248 | Kelley, I hope your feeling better and I'm sorry to hear of others with neck pain, especially having to take pain meds so long after tx. Kelley I just wanted to let you know that I also get aggravated because I never get any scans done. The same old song and dance. "No need until you show symptoms". A yrly chest X-ray and that's it. Of course that's when my cancer split personality rears it's ugly head; What are these Dr.s trying to hide? Doc I'm tough enough please order the test I have to know for peace of mind and I want to be healthy enough to enjoy my last trip to disney with my kids....etc. etc.Then I settle down and reach into my pocket and take out the $4 and go to a high school basketball game and have the time of my life.I have now after 7 yrs drew a line in the sand and I'm going to let the dr's treat and find the cancer and I'm going to take Minnie's lead and take in some more basketball games and work on things that Improve my quality of life. I know that can be difficult for those in pain, It's more like
Mark D. Stage 3 Nasopharynx dx10/99 T2N3M0 40xrad 2x Cisplatin 5FU. acute leuk 1998.
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