| Joined: Aug 2010 Posts: 157 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Aug 2010 Posts: 157 | Doc came in this morning and looked upset, then just started spouting it out. " Nate, this one is very aggressive. I took out 5 times more than the pathologist said too and the tumor shows to be poorly differentiated. Were going through the MDA tumor board monday then go from there, more surgery may not be the answer but we will see what they say. Possibly more chemo and radiation but that may be so toxic it could kill you. Just hang tight and we will see you next week, you're being discharged friday." I guess the only good thing said was All nodes came back negative. Whomever feels like chiming in then please do, with tips , stories, encouragement etc. What does all this mean? He did say this type of cancer in 20 somethings is the hardest to kill. I was ALL CLEAR for 3 scans, now here I sit in my cubicle at the hospital just confused. He seemed so confident and now he looks defeated. I just want to be at home with my family, korinne and the dogs.
SCC left lateral tongue, left neck dissection. 2 nodes positive. 3 All Clear then ITS BACK 8/23/11 Shows 1cm in tongue in CT SCAN, Radial Free Arm Flap with Radical Neck Dissection 9/20/11 , All Nodes Negative, But Tongue Tumor Poorly Differentiated. Awaiting next step in treatment on 10/5/11... RIP Nate 7/28/12
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Nate,
we've talked all day brotha, you know my thoughts and that I'm in your corner. I think it's sad your Dr can't muster up a fraction of your courage and not look defeated. "F" that guy. Square your shoulders, lower your chin and get those hands up, we still got some work to do.
Rest up, love on those close to you and prepare your heart, it's the size of the state you live in.
Love you bro
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | 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 | Nate, you and I have also been chatting today. You know what Ive told you. Do NOT give up!!!! Even when things look bad, you never can predict what the future will hold. Try your very best to keep thinking positive! I know how difficult that is, Ive been in your position. Lets hear what the plan your docs come up with on Monday.
There are a couple of good things. Having zero lymph nodes come back positive is a good sign. Just being able to return home on Friday will help you to feel better. I bet you cant wait!
Hang in there!!! 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: 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 agree totally. Please don't give up and don't be defeated. Poorly differentiated cancer responds better to radiation and chemo than well, and moderately. This is because it doesn't resemble an actual cell and therefore doesn't have the defenses. The problem with it is because they are so poorly differentiated the replicate quickly. It's best to move and make a decision ASAP. Push. The good news is no node involvement. Hopefully your doctors get out ahead of it. If you don't have confidence in your dr. if he seems out of ideas, then get another dr. But don't waste time. talk to him before friday. Tell him you want to treat this aggressively - you're young and strong, you can handle what they throw at you. hugs... heal well.
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 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Jul 2009 Posts: 453 | Nate, you listen to these guys. They know what they are talking about. Know that we are all behind you, supporting you. Stay strong Nate. You are one of the toughest guys I know, don't let this beat you.
Sending you strength and love from Australia.
Wendy xx
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone No surgery Teeth removed 06/07/2009 radiation 13/07/2009 x 7wks chemo 15/07/2009 x 3 Cisplatin last TX 28/08/2009 25/11/2009 PET-lymph node activity. 08/01/2010 CT Scan-ALL CLEAR 03/03/2010-Peg removed 01/2013 left side of Jaw removed and replaced with pectoral flap. 23/12/2020 scan show lesion in tongue 01/2021 SCC stage 3 base of tongue diagnosed 01/03/2021 chemotherapy started.
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Nate - You are a fighter!! You've already demonstrated that so keep up the momentum! There is always something you can do about whatever situation you are in and YOU CAN DO IT!! You have had positive signs already, so concentrate on that and as Cheryl says, if your doctor "seems out of ideas, then get another dr". Yell if you have to, to get people moving. Sending positive vibes and hugs your way.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Jul 2006 Posts: 388 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jul 2006 Posts: 388 | Nate, these experienced folks have some pretty encouraging words for you! Listen to them, and we are all pulling for you to come out the other side of this bad news with a new, upbeat, and fresh outlook from your doctors. Hugs, Nate.
Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
| | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jan 2009 Posts: 476 | Nate, you have received some great advise from some very wise people here. YOU CAN DO THIS!!! You have so many people in your corner pulling for you and praying for you. I am amazed at how well you are doing after this HUGE surgery. You have youth and strength on your side - FIGHT, FIGHT, FIGHT!!! If you don't feel confident in your doctor find another one. There are many doctors out there and feeling confident in the one providing your care means so much. Continued prayers! Sending you a HUGE hug from Philly! Wanda
Wanda (47) caregiver to husband John (56) age at diag.(2009) 1-13-09 diagnosed Stage IV BOT SCC (HPV+) 2-12-09 PEG placed, 7-6-09 removed Cisplatin 7 weeks, 7 weeks (35) IMRT 4-15-09 - treatment completed 8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear 4-2013 - HBO (30 dives) tooth extraction 10-2019 - tooth extraction, HBO (10 dives) 11-2019 - Left lateral tongue SCC - Stage 2
| | | | Joined: Aug 2010 Posts: 157 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Aug 2010 Posts: 157 | Here is the problem with finding a new doctor, I'm in the public county system. No Health Insurance. My doctors were residents at MDA, and the team is them, their residents here at LBJ/ENT and MDA tumor board. I definately want quality of life, this is a very uncomfortable hospital and don't want to just be their lab rat for aLl the students to come see. I don't want to keep getting cut up like a pig, I am so swollen and burning right now. Never thought I would say this but I hope chemo and radiation is the answer. I bounced back quickly from that last time as most remember and have the PEG in place already. Someone give me some ideas on good high calorie supplements I can use, Christine, Eric? I'm going to use the shit out of my vaporizer to stay hungry and pain free! Get bent cancer!
SCC left lateral tongue, left neck dissection. 2 nodes positive. 3 All Clear then ITS BACK 8/23/11 Shows 1cm in tongue in CT SCAN, Radial Free Arm Flap with Radical Neck Dissection 9/20/11 , All Nodes Negative, But Tongue Tumor Poorly Differentiated. Awaiting next step in treatment on 10/5/11... RIP Nate 7/28/12
| | | | Joined: Jul 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2010 Posts: 531 | No words except ones I can't put on here cuz Christine will be an editing fool if I did. So after those were all thought in my head, and a deep breath...FIGHT NATE! Gosh darnit do some research on docs maybe somebody else will be able to take your case if you don't like these docs and this hospital. Ron had no insurance either and the Cleveland Clinic took care of him and I got him on Medicaid and now he is on Medicare and he has the best docs there. Go on the internet and do some searching, be proactive while you are there waiting to go home, maybe have Korrine(by the way I so love her name):)talk to whoever you find and give them all the info on your case maybe somebody down there will help you at a different hospital. They have that list on this forum somewhere for hospitals dealing specifically with cancer. Do not just lay there get to lookin! Hugs to you! Sue
CG to Ron Out of Pain 4/3/13 4/12-lung and under chin growth no treatment 1/13/12 lung biopsy 6/11 recur 6/30 resection #2 Clear margins Clear 12/10 Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out RAD 30 8/10 DX 4/2/10 "Oral Cavity" T3NOMO 12/28/07 Non Hodg Lymph remission 7/08 passed away 4.3.15, RIP Ron, you are greatly missed
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