| | Joined: Jun 2013 Posts: 262 Gold Member (200+ posts) | OP  Gold Member (200+ posts)
Joined: Jun 2013 Posts: 262 | My tonsil cancer has reappeared less than a month after my tonsillectomy. We were on vacation last week and I had time to look in my mouth for the first time in about two weeks. My massive post-surgery excavation is gone, replaced by tissue extending from the tonsil area just as it did the first time. This time there are also peculiar and quite ugly growths on the adjoining wall of my cheek.
My tumor was very fast growing the first time, going from not visible to 3 cm plus in about 10 days. By the time I had surgery, the first tumor hung from my tonsil to my tongue and nearly touched my uvula. This one seems inclined to do the same. It's about 3/4 of the way to my uvula and at least 2 cm high. Two docs viewed my mouth two weeks ago and neither noticed anything, chances are there wasn't anything to notice yet.
I supposedly had a clean margin of less than 1 mm on the deep edge the first time. I kept looking at a ruler and thinking that wasn't much of a safety buffer. I guess I was right. I don't blame my surgeon for not taking more, there was already a risk of hitting a major blood vessel or opening a hole between my mouth and nasal cavity.
I am getting ready for chemoradiation and have a simulation appt. Tuesday. I was expecting to start within the next two weeks. Tomorrow morning I will call the RO and MO to let them know what I am seeing in my mouth and find out whether it changes anything.
I had been gearing up to follow the Block Center program in support of my treatment but this really takes the wind out of my sails for the moment. I am thinking less about nutrition etc and more about what the best options would be for my daughter if the worst happens.
I was so scared of treatment and the long-term physical losses, now I am way more scared of this vicious disease.
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: 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 | Mamacita - I'm sorry - it is terrifying and it does seem very aggressive - don't be discouraged, just let this news out more fight in you  it should respond well the the chemo radiation hold onto this. Hugs...
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: 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 | Did a biopsy confirm you are having a recurrence? Maybe its scar tissue?
Wishing you all the very best with everything!
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: Jun 2013 Posts: 262 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jun 2013 Posts: 262 | Thanks Cheryl and Christine, you are so kind to me. Please forgive me, I was too quick to panic. <red face here> My RO says I'm just a month out of surgery and what I'm seeing is changing architecture as things heal. My uvula is being pulled to the surgical side as tissues close over the fistula/defect from surgery. It's off-center now, and I mistook that for the tonsil site closing in. It's hard to see well because I can't open very wide. He says my ear pain is consistent with the major surgery.
Even if it is a recurrence the response would be the course we're on, Cisplatin plus radiation. Bottom line is we're going to give it another 10 days before worrying more or a biopsy. In my heart of hearts I would like my surgeon to look at it, but I can't take time off work to make the trek with so many absences looming for treatment.
I guess this was my first taste of the fear that every mysterious change will trigger from here on out.
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: 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 | Yeah - glad its just healing..
Last edited by Cheryld; 08-22-2013 09:59 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: Aug 2013 Posts: 144 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Aug 2013 Posts: 144 | I am so sorry you had to go through those feelings.
. Radio/Erbitex:(35/6.) .6/13 RSSC with met.to left neck.9/11/13 MND with left tonsil removal.9/18/13 margins failed, .Dx Terminal. 10/22/13 Dx.StageIII Lymphedema. Carboplatin/Taxol, cancer progression,WECF
3/14/2014 given 2 weeks, 3 maybe. All the veins in my head are slowly leakinging due to Ehlers Danlos syndrome. lucky thing is that my spinal fluid leaking out my nose is slowing the build up of pressure in my huge, huge head. you would not believe.
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