| Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Aug 2011 Posts: 596 | Hello, friends, Is it typical to still have intermittent/occasional ear pain on the surgical/irradiated side? I am 8-9 months post-rads/chemo/tonsillectomies. This was for my second primary cancer tumour. The first surgery was a partial glossectomy/SND, clear margins & nodes, no adjuvant therapy. Both were HPV-negative. I am being followed monthly at this point. I see my MO one month and my SO the next month. I am scoped every month and all has "looked great", just some residual edema. I have my second post-treatment MRI w/ contrast next week, followed by an appointment with my SO. I know I'm getting "scanxiety" and this ear pain has happened before, but it seems that it might be more frequent. I'm also having some TMJ issues on that side. I guess I'd just like to know others' experiences. Thanks for listening. xo, 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: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Mar 2013 Posts: 421 Likes: 1 | Hi Kerri,
Yes, at least for me it was. I'm 8 weeks post Tx and had some minor ear pain on the heavily irradiated side but more so muffled hearing which scared the bejeebers out of me (hearing loss is a side effect of Cisplatin). Turns out it was a buildup of ear wax. An ear wax removal kit solved the issue.
"T"
57 Cardiac bypass 11/07 Cardiac stents 10/2012 Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+ Palatine Tonsillectomy/Biopsies 12-21-12 Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13 Emergency Surgery/Bleeding 2/18/13 3/13/2013 30rads/6chemo Finished Tx 4/24/13 NED Since
| | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Aug 2011 Posts: 596 | Thank you, T!
I'm looking at your signature and it seems like your treatment was spread out over time.
You said you are 8 weeks post treatment? In your signature, it says you had rads/chemo in 2012...is that a typo or did you have additional treatment? Was the emergency surgery just after your neck dissection? Forgive me, I'm just a little confused as to the order of treatments. I'm guessing that they started with surgery in late 2012 and went into this past Spring of 2013?
Nonetheless, thank you for sharing your experience. I'm wondering how long this will last. I know I will ask my doc next week, but it's just nerve-racking as you know. Every little thing makes you worry...especially with having had cancer twice and a scan coming up next week!
Take care and I'll keep you posted, 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: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | They say if you had pain before treatment, it's likely you'll have pain after treatment, more than someone who did not. Glad they are monitoring you closely to rule out any disease. I had neck/ear pain from an enlarged cancerous lymph node high in level ll, near the ear, which diminished during radiation, but continued for a while after, probably from the necrotic tissue still hitting a nerve, and radiation still works just as long as your treatment lasted, so it was probably up til then, 7 weeks. They had to add the fetynal patch to the oxycodene, and seemed worse when laying down, especially during radiation.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Mar 2013 Posts: 421 Likes: 1 | Hi Kerri,
Thanks for catching that! I corrected it. It still was a few months from Dx to Tx as I ended up seeking a 2nd opinion at Johns Hopkins and deciding to seek treatment there (no brainer!) as opposed to locally.
But yes, I started locally (Winchester Medical VA). PET was done Dec. 2012 and the cancer was local in my neck only. I had my 1st tonsillectomy/biopsy done Dec 2012. Was very uneasy with the doctors and lack of organization at Winchester and went to JH. They were 180* different in their assessment and did the selective neck dissection first to remove what was a very aggressive cancer. They also took my lingual tonsils and biopsies to try and find the primary. We never did find the primary. I was treated on the assumption it was oropharyngeal cancer and hit pretty hard all around to cover the bases.
I truly understand what you're saying about recurrence. That's my main concern having had the PET a full three months prior to treatment. I'll be getting my 1st post Tx scan in Sept/Oct.
Best wishes, positive thoughts and prayers on your upcoming scan! Here's to meeting NED again!
"T"
57 Cardiac bypass 11/07 Cardiac stents 10/2012 Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+ Palatine Tonsillectomy/Biopsies 12-21-12 Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13 Emergency Surgery/Bleeding 2/18/13 3/13/2013 30rads/6chemo Finished Tx 4/24/13 NED Since
| | | | Joined: Jan 2013 Posts: 80 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jan 2013 Posts: 80 | Hi Kerri,
I am a few months behind you - 3 months out of treatment - and like you am lucky to see the wonderful staff at MEEI (though I see Dr. Emerick). I too have intermittent pain in/around my left ear which is the side that had the tonsil cancer. I know that the last 10 sessions of radiation included a 'boost' on the left side, so there has to be more sensitivity and damage to all the tissue and nerves there.
I will keep positive thoughts and prayers for your upcoming scan. Keep us posted.
Best,
Nancy Age 56 at diagnosis Neck Lymph node removed 11/2012 Tonsillectomy perfomed 12/2012 - identified as primary SCC Left Tonsil with Left Node involvement, DX 12/2012 RX started 1/29/2013, finished 3/23/2013; Daily IMRT (35 Sessions) Weekly Taxol/Carboplatin (6 weeks) PEG placed after week 4 (3/1/2013) PEG removed 6 1/2 months later (8/12/2013) | | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Aug 2011 Posts: 596 | Thank you, T . Thank you, Nancy . It makes me feel mentally better, at least, lol! My ear has been killing me today. I've had to take 2 doses of oxycodone, plus my regular regimen of low-dose methadone. I've been sleeping most of the day. The fatigue is compounded by recently having my thyroid poop out. I've been on meds for 5 weeks. I'll get my levels checked next week and my synthroid will be adjusted. I'm looking forward to the meds helping with the fatigue. Also, I returned to work 3 weeks ago and I work M-Th evenings, 4-9 pm, then Saturdays 8-1. It's good for my mental health, but I wasn't nearly ready to return. We need the money badly, so I'm just sucking it up. It's really not bad when I'm there, but the next day I'm extra tired and hurting. I feel badly for my kids...sigh. Hey, I'm alive and relatively well and this won't last forever! Thanks for listening to me blab on and on. I look forward to the day when someone asks me how I'm feeling, I can honestly say, "good"! For now, it's some extra makeup and a smile and other days I can't quite hide it . Just keep swimming, as Dory would say! Love to my OCF Family! 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: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Aug 2011 Posts: 596 | I have some "scanxiety" ramping up this week. This Friday, I have my second post-treatment MRI w/ contrast. It will be a year in early August since the second round with the beast. My first scan this past January looked great. I'm hoping for the same this time around. The scan is bad enough, but waiting for the results is worse. I hate this. Sometimes, I really can't believe this is part of the scrip of my life.
I'll keep you all posted.
Love, 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: Jan 2013 Posts: 57 "OCF Canuck" Supporting Member (50+ posts) | "OCF Canuck" Supporting Member (50+ posts) Joined: Jan 2013 Posts: 57 | Hi Kerri I'm scheduled for the Friday scan as well, my first pet post rads so know what your feeling. I also had ear pain which stopped in the last month,still get it a bit when throat aggravated from eating. Good luck on fri praying for double Ned'
46 yr old non smoker moderate drinker Lump on neck Dx branchial cyst by fna mar 2012 Op to remove dec2012 biopsy back hpv 16 scc Starting rads jan 31 no chemo docs say? Finished mar13 Pet scan june 30 NED :))) Back to work and enjoying life Checkup aug 12 all good
| | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Thinking of the two of you. We do not have any scheduled scans now - with our teams blessing. The " scanxiety" is indeed too much. Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
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