| 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 | Other than a slightly swollen neck I had ZERO indications which I believe is common for HPV+ OC's.
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.
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Suzanne
As Leslie pointed out you have been seeing an ENT all along, just using their fancy formal name rather than their colloquial designation. Yes, a simple CT scan is all that is really needed especially for diagnosing ear pain possibilities of cancer tumor. There is a reason why almost every PET scan is usually a combination of both PET and CT. PET scans just measure sugar intake, a highly unreliable diagnostic tool for cancers of the tongue, base of tongue and soft tissues in the oral cavity. The CT scan shows what is really there or not anatomically. If your CT scan is clear then it very improbable that the ear pain is being caused by cancer. An MRI would also be more accurate than any PETScan. It is a very reasonable request to have either a CT or MRI done in light of this symptom. Again, I would bet they will come out clear, but you need and deserve this peace of mind. Charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Thanks Charm:) Why can't they just go by ENT's...lol Anywho..I will calling my doc tomorrow and get an order for a CT scan. Then I can put this to rest. As always...I appreciate your input. Leslie...thank you for letting me know that they are the same thing. Someone else may have told me that a while ago but I forgot:)
Happy new year to all:)
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:)
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Suzanne. I had about 3 Pet Scans and all they did was confuse things with the false positives that came back. You sure did get good responses from our intelligent members. This is the worlds best site for learning and answers. ZGood luck and go for that marriage and kids ..
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: Sep 2009 Posts: 60 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Sep 2009 Posts: 60 | I was in the same boat as Charm. Ear pain for a year, being told to take alergy meds. Then after I lost my insurance due to a layoff, I get a proper diagnosis. The tumor can put pressure on the nerves and cause the pain. I also knew when the treatments were working when after 5 weeks of Rad the ear pain suddenly went away.
Flip _________________________________ Age: 54 SCC Tonsil + 3 nodes Radiation and Carboplatin Treatment 4/1 - 6/7/2009 No surgery, no PEG Never smoked Drink socially (brew my own beer and love wine. A bottle of scotch lasts me a couple of years) CT 11/4/09 No sign of envolvement in Tonsil or nodes
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | What about during treatment that ear pain suddenly comes back?
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: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Suzanne, Any knews on aCT scan? Did you get one scheduled?
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: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2008 Posts: 716 | I had ear pain and for about two months before being diagnosed it felt like my teeth where going to fall out. After the surgery in order to have the tumor removed all the pain went away and it felt like my teeth were fine.
I like how we're all taught that early discovery saves lives yet when we say something or go to the doctor's office we're told to wait or just ignored...go figure.
Tell her you can't deal with the ear pain and that it needs to get resolved asap. And remember, a lot of different things cause ear pain.
Will be thinking of you--good luck.
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer 8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35 11-4-08 Recovering & feeling better | | | | 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 ended up getting a needle biopsy right thru the area between my right jaw and ear. Damn it hurt but it was reliable. It came back negative which made me , my ENT and Oncologist all 3 happy.
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: Oct 2006 Posts: 383 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Oct 2006 Posts: 383 | I agree with Charm and the others above, your life, your decisions. My issues started with an ear ache. It wouldn't go away and I wouldn't stop looking for an answer. Then, all of a sudden I had a sore open up under my tongue and it explained the ear ache. Referred pain from the tumor. Even then brush biopsies showed negative. Not trying to scare you but if a PET scan makes you feel more comfortable then nobody should deny your request. Best Wishes, Steve
SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!
**** PASSED AWAY 10/8/16 ****
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