| | Joined: Jun 2015 Posts: 3 Member | OP  Member
Joined: Jun 2015 Posts: 3 | Hello all.
I've had oral squamous cell carcinoma sage 4 in my tongue and neck nodes. I just ended a course of chemo and radiation which friend much of my tongue but overall the cancer didn't respond well. Now I'm looking at losing most if not all my tongue. I have to admit that I'm scared. I just found out by reading an article that it's not best to do surgery after radiation and chemo because f healing and recurrence, but I don't know what I have left. I'm going to meet with the surgeon tomorrow. It occurred to me today that maybe I need support....and to understand how everyone else lives...
JC
Squamous Cell Carcinoma
Tongue and lymph nodes
35 radiation treatments
chem with cisplatin and carboplatin
Largely unsucessful
| | | | | 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 | Welcome to OCF, JC. You have found the very best source for info and support. We have been faced with similar difficult decisions as what you are going thru. Just remember every single person is different and will respond to things in their own unique way.
With any recurrence its important to take care of it as soon as possible. But at the same time you also want to get the best medical care you can. A second opinion is always a good idea. If you are not being treated at a major Comprehensive Cancer Center (CCC) you might want to consider seeking one out for the very least a second opinion. These are the countries most knowledgeable and skilled places to get treated. They use a multi-disciplinary team approach. Please let me know if you need the CCC list and I will repost it.
Radiation usually is not done a second time to the same area in a short period of time. Surgery may be your only option as chemo alone is not curative.
Hang in there! We will help you get thru this.
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: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts)
Joined: Nov 2009 Posts: 644 Likes: 1 | You're in that awful limbo between getting a result and waiting to see the doctor for a plan. All my sympathy. It's a very hard time when the mind searches round for more and more things to worry about. Good luck for the consultation with your doctor.
1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | | 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 | JC I feel your shock at finding out that rads and chemo have not cured your cancer. My Husband Kris , had a recurrence 10 months after his rads and chemo. His only option then was surgery. Yes, they prefer not to to do surgery in a relatively close time period post radiation but it is doable. Please do not worry unnecessarily about this.
Please take Christine's advice and get a second opinion from a CCC. This is your life you are talking about.
Kris had his entire tongue removed . Life is still good.
Thinking of you ,
Tammy
Last edited by tamvonk; 06-04-2015 03:26 AM.
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 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 | Are you at a CCC? Comprehensive cancer center? If not get a second opinion there. The treatment for this type of cancer is usually surgery first - because it doesn't readily respond to chemo and rads. Then depending on the post surgery pathology there's a follow up with rads and chemo.
That said... we're past that point and to be honest - the surgery is your best option.
so get a second opinion with a top hospital if you haven't already.
the surgery actually isn't too bad (generally easier than the rads) but as you already know healing is a little harder. up your protein, eat healthfully and walk a little daily - this will help with circulation, O2 and healing.
hugs... we're here for you
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 Topics18,168 Posts196,925 Members13,103 | | Most Online458
Jan 16th, 2020 | | |
|
