| | Joined: Oct 2006 Posts: 383 Platinum Member (300+ posts) | OP  Platinum Member (300+ posts)
Joined: Oct 2006 Posts: 383 | So I saw my surgeon the last week of October and all is good! Mid-November and I start getting some wild headaches (I hardly ever get headaches). Thanksgiving week I feel a knot under my left jawbone. Now I'm concerned. Can't get into surgeon that week (They said mid-December(?), so I call Oncologist and get in day before Thanksgiving. We get a scan scheduled last Friday and yep, here we go again. Spent yesterday afternoon with surgeon and we scheduled surgery for next Wednesday. Tumor is Squamous-same type, different area and side of throat. Attached to a Lymph Node but he feels confident it's very isolated and will be an easy out with no sign of metastasis! Time to go, pain is becoming a grind at this point and now dropping weight even though I am eating. Will keep all updated. BTW, although I haven't commented here too often lately this group is always in my prayers. What a great Foundation and wonderful group of people here!
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 ****
| | | | | 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 | Sorry to hear the news, Steve. Good luck with your surgery and I pray for wisdom and guidance for your medical team as well as the best possible outcome for you.
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: 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 | Steve, Im so sorry you are going thru a recurrence. Im hoping your surgery goes as planned and it can be a very simple procedure to get you back to being cancer free. Best wishes!!!
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: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,293 Likes: 1 | Steve,
So sorry to hear about another recurrence. On the plus side is you know the drill well. On the minus side is you know the drill well.
Let's hope you caught it early and a few snips can remove it and all will be well again.
Good luck.
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: Oct 2006 Posts: 383 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Oct 2006 Posts: 383 | Thank You All. Will keep you posted as I progress through this latest journey! I feel very Blessed and confident this will be a quick turnaround!
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 ****
| | | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2011 Posts: 596 | Hello, Steve.
I am so sorry to hear of this 4th round...so unfair! I am glad to know that you are maintaining a good attitude in the face of this latest news.
I will keep you in my thoughts and follow you through your treatment and recovery.
Love in OCF,
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: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Paul has been where you are - he's very knowledgable - hugs and best of luck
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: Oct 2006 Posts: 383 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Oct 2006 Posts: 383 | Thanks all and here's an update. To your point Don it turned into a lot more than a few snips. To put it in the surgeons words, it was very aggressive, growing fast, and was really "Packed" in there. It had compromised the node (Encapsulated?), and spread around a few others as well as the jugular and several nerves, which as you all know will create more opportunities during recovery and therapy! I lost the jugular vein and several nerves, #9 which controls soft palate (Left side) so everything loves to come back up through my nasal passages. It wrapped around the nerves that provide feeling to ear, side of face, etc. (No big deal, just like ear/side of face & head are asleep all the time). I am grateful though as he feels strongly that everything is clear now. As a precaution and because of the aggressive spreading my tumor board has met and my oncologist determined that he would be willing to re-radiate, especially since this is on the other side (Left this time). And of course, the decision for six weeks of chemo to accompany the radiation! With all the swallowing issues due to nerve damage I get feeding tube early, tomorrow afternoon as a matter of fact! Will be soliciting help, encouragement, and Prayers as I go along (And hopefully I can help others along my path, it's not like I haven't already learned a few things over the past nine years, much from right here). Well, enough rambling. I'm braced, Faith is strong, attitude is right, time to get it on and stop Cancer in it's tracks once and for all. I have Grand-kids to take fishing this Spring! Love you all and thanks for listening and being there for me, and for one another.
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 ****
| | | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2011 Posts: 596 | Hi, Steve.
I'm so sorry of the findings once the surgeon got in there. It seems like the timing was essential. It's good to hear that he feels confident that he got everything, though I'm sorry that you had to lose the nerves controlling your soft palate.
All of that being said, I think the decision for another round of chemoradiation is a good idea to sweep up any stragglers that could cause trouble later. As you said, you know what to expect. I admire your strong faith. I wish I had that on which to lean, but I don't. Your resolve to beat this once and for all is empowering. May you be fishing with your grandkids come spring!
Love in OCF,
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: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | So glad your surgery went well - were I you I would push for rads. It is doable based on location. Hugs and best of luck.
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
| | |
| Forums23 Topics18,242 Posts197,125 Members13,310 | | Most Online1,788
Jan 23rd, 2025 | | |
|
