| Joined: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Mar 2013 Posts: 421 Likes: 1 | So, I got scoped poked and prodded on Feb 18th and got the all clear. I had a bit of a heart scare as "scanxiety" reared it's ugly head and sent me to the ER with chest pain. After a full cardiac workup, I've been given that all clear there as well.
Overall, I've been doing Ok at almost a year out of treatment. While I have quite a few of the usual side effects, I'm managing well overall.
Today, I noticed a hard painless swollen node under my right ear just at the jawline. It's visible just looking in the mirror. I'd estimate it to be at least a centimeter or more right now. Obviously I'm kinda freaking as this is how it all started in August of 2012. I don't poke and prod myself at all so I didn't notice it before and it's only been a month since my last check up. Could the beast have come back that fast and strong?
I sent a note off to my team and I have an appointment with my dentist and GP next week. I don't know what I'm even asking but damn.... with the stats and me being a year out?....
Positive thoughts and prayers
"T"
Last edited by fishmanpa; 03-18-2014 05:26 PM.
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: Jun 2013 Posts: 262 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jun 2013 Posts: 262 | T, I so understand your panic! Cancer is real for us, not an abstraction. I know it's easy to say and hard to do, but take a deep breath and gIve all the possiblities equal play. It could be a swollen node from a cold or sinus infection or plain old scar tissue, to name just two. Justifying optimism: You were checked out just a month ago. You've been examined regularly. Your treatment was comprehensive -- surgery, chemo, rads -- you fired all the bullets and then threw the gun at it. You were treated at a top facility. And your HPV+ variety of tonsil cancer has proven highly responsive to exactly the regimen you followed. Of course you need to have this bump checked out, but the odds are very much in your favor. My thoughts are with you, praying for good news -- Lynn
53 T3N2aM0 HPV+ 5/26/13 discovered painless superball-sized lymph node in neck 6/26/13 DX SCC R palatine tonsil 7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes 9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses 10/16/13 Treatment ends Dec 13 Ulcer appears at surgery site Jan 17 Biopsy -- no cancer! Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
| | | | 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 | Well that's a bugger. I would be phoning your team to be seen ASAP. That's the only way to find out what's going on and to relieve your anxiety. Take a deep breath. Reread what Lynn has written Thinking of you, 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!
| | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Mr T,
Sorry for new concerns cropping up. There are too many "what-ifs" to really play them all out. Keep busy and let the doctors do the analytical work. Enjoy every day as much as you can. As far as you know, it has not come back until they can prove it.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | 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 | I'm going to second Tammy's response - call your team NOW.
It could be an infection or a cold or something innocuous. But do not wait, you need to have peace of mind asap, simple as that. Call, tell them you're freaking out, and need to see the dr. ASAP. I'm not a fan of FNAs but they may do one and if they do then you will have to wait for the results. If that is the case then you'll be waiting even longer to find out what's up, if you wait to see your gp etc... call now. hugs. Hoping it's nothing.
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: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Mar 2013 Posts: 421 Likes: 1 | I have an appointment with my ENT/Surgeon Monday at Johns Hopkins.
Please keep me in your thoughts and prayers
"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: 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 | I will absolutely. I'm hoping it's nothing but best to find out asap... hugs.
Last edited by Cheryld; 03-19-2014 12:05 PM.
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: Nov 2013 Posts: 104 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Nov 2013 Posts: 104 |
Brian Stage IV TxN2aM0 HPV+ SCC 38 y.o. male 9/20/13 Sentinel Node Found 12/5/13 Start of 72Gy and 5 bags of Cisplatin 1/21/14 Treatment Ends 1/25/15 1 Yr clear
| | | | 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 | You did the right thing by consulting your team, and anything, like cancer, is possible even in a short time, but it can be many other things also. Good luck with everything.
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) | OP Platinum Member (300+ posts) Joined: Mar 2013 Posts: 421 Likes: 1 | It seems that this situation may be indicative of something systemic in nature. The gland on my neck was joined by others under my arm and groin and I've had a maddening persistent itching over my entire body since this started. There are bruises and blotchy red rashes where I've been scratching (I've been awakened every night since this started because of itching and scratching in my sleep). I awoke today an it seems the swelling is beginning to abate a bit. The itching is barely tolerable even with anti-itch cream and Benedryl but it does help a little.
I see my ENT Monday and we'll see what's going on.
Positive thoughts
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: 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 | Can you say reaction to something??? Yikes!!!
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: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Mar 2013 Posts: 421 Likes: 1 | Despite the fact that the swollen node on my neck had gone down considerably and the very unusual way this all started, my ENT is very concerned. He had a CT with contrast done stat while we were there but was unable to arrange a FNAB of the node. He has no idea why it swelled as rapidly as it did or the reason behind the intense itching (which is finally easing). The CT showed "thickening" and "tissue inflammation" but he thinks it could be due to whatever it was that hit me. The node itself didn't present as very concerning. This was based on what he saw but it has to be reviewed by the CT specialists. I have to go back to Baltimore for the biopsy. Contrary to the standard mantra he said "In a situation like yours we assume it's cancer until we can prove otherwise". I appreciate their concern and thoroughness but I'm a bit in freak out mode right now So I'll know in a day or so when I'm heading back down to Baltimore and until then, it's a waiting game. Positive thoughts and prayers. "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: 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 | I am honestly thinking you've had a reaction to something. I know their concerned but It sound like your node was very unhappy with something you dealt with... Food you ate or and item came into contact with. Hugs and fingers crossed.
Last edited by Cheryld; 03-24-2014 07:22 PM.
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: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | Have you had the arthritis panel as part of your bloodwork to rule out RA / Lupus? Maria (I have RA; possibly a touch of lupus)
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker First symptoms 7/2010, DX 12/2010 TX 40 IRMT (1.8 gy) + 10 Cetuximab PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | Joined: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Mar 2013 Posts: 421 Likes: 1 | UPDATE:
I spoke to my ENT's office and they said I should see my GP and call back (which I did today).
She has no idea what caused the node to swell and the itching etc. No one seems to know but this whole thing seems to be systemic as it's now progressed to my chest. I'm a little hoarse and my ears itch. Their best guess is "something viral". I was given an antibiotic to take anyway.
I discussed the "scanxiety" with my GP and she's not surprised at all that I have a bit. The med she gave me is one I can take whenever I feel I need it so I can start a week or so prior to check ups and go off afterwards. There are no side effects associated with it as it's not an SSRI and mild by med standards.
The good news is that the CT scan was "unremarkable" and my ENT said not to get the biopsy and to see him again in May. If the node persists or grows larger contact him but for all intents and purposes, I'm Ok for now.
Can you say ~WHEW~?
Positive thoughts
"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: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | YEAH!!! for the report and also getting something to keep around to beat down when the mind starts spinning and smokin a bit too much.
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Jun 2013 Posts: 262 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jun 2013 Posts: 262 | T, I can say Whew, and Hallelujah! I'm so glad that you bored your ENT this week . And I really like the way you're stepping off the scan-coaster. I think I need to follow your lead and will be talking to my docs about a short-cycle med. That idea just never occured to me. Thanks for sharing the info! (((HUGS))) Lynn
53 T3N2aM0 HPV+ 5/26/13 discovered painless superball-sized lymph node in neck 6/26/13 DX SCC R palatine tonsil 7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes 9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses 10/16/13 Treatment ends Dec 13 Ulcer appears at surgery site Jan 17 Biopsy -- no cancer! Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
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