| | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | That actually sounds quite encouraging. Focusing on recovery is definately the way to go! Remember to ask for help with the boys so you can treat yourself now and then - maybe a movie or browse at the mall or an antique store. Toes crossed for the upcoming PET - can't type with fingers crossed ;-)
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Mom of 3...was there a typo maybe? Your post says they upgraded from a low grade 2 to a low grade 2?
Of course I am happy to hear you are on the road to recovery!! It's a shame they didn't get clear margins...I wonder why the doctor didn't take more when they said they knew that was the case?
How is the eating going? Make sure you are getting your nutrition..it's very important for recovery and hard for us OC patients it's not always easy!!
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Aug 2011 Posts: 269 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | hi mom of 3, i've been following your thread from the beginning and thinking about you. hope all continues to go well and your pain subsides very soon. i will continue to check in on you.
Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
| | | | | Joined: Aug 2011 Posts: 11 Member | | OP Member
Joined: Aug 2011 Posts: 11 | Ooops that was a typo  It was upgraded to a low grade 3. so, I went for my next check up yesterday and all looked to be healing well. I turned a recovery corner when the stiches (holding the "bio" skin stuff on...I forget what that stuff was called) and that really made things more tolerable. I am still on Ibuprofen 24/7 as the swelling really effects my ears and throat. My nurse prac. check nad no inner ear infection but it hurts just as if I had a bad one. She said everything looks healthy and great. I guess a bright spot is that she said my "hole" is just small enough that she would not suggest a prothesis for my soft palate(?) she said my tissue will fill in enough and in the long haul it will be so much better. (plus, more surgery is very possible) As for eating, each day gets better but I stick to very soft pasta, fish for protein (as Dr suggested) and that slides down easy, cheesy things work well, diced peaches and pudding. My wt loss slowed down so that is good, in fact today I lost none! So, since healing is good, I dont go back for a check for 2 weeks and then I scheduled my next recheck with Dr Futran for Dec 7th. He told the nurse prac. that he woud most likely not do a scan at that time. Hum? Sometimes it makes me wonder why there is such confidence that there will not be a reoccurance when I did not get clean margins. But I do trust him and he is known for being the best and it was reviews by the Seattle Cancer care alliance so I guess I will try not to worry but hard when I read about lots of reoccurrence when clear margins were not obtained. Time will tell. BUT I am officially on the 5 year countdown to being cancer free!
Found questionable spot in routine dental cleaning 6/28/11
Consult w/ Oral Surgeon 7/20
Lesion removed for Biopsy 7/28/11
DX 8/3/11 MEC (Grade Low2)
upcoming resection surgery 8/31
| | | | | 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 | Glad to hear you are healing quickly. Not sure if your doc was going to have you do a CT or a PET scan. I know if it was the PET scan that those tests have a high number of false positives. Any inflammation will light up the PET scan. That could be why your doc put it off. Keep up the great work with your eating. Here is a list of easy to eat foods. It might have some items on here you hadnt thought of trying. Hope it helps. Keep up the good work!!! http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=94621#Post94621
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 | Congrats on healing so quickly glad things are going so well for you. And Christine is right sometime you need a bit of time to heal prior to a scan. Take care and healing vibes to 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
| | | | | Joined: Aug 2011 Posts: 269 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | hey momof3boys!!! so glad to see you are healing well. sorry you still have pain in your ears and throat and hope the swelling goes down soon, very soon! keeping you and your family in my prayers.
Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
| | | | | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2009 Posts: 440 | Welcome! Sorry I am so late. I too had MEC. Thankful yours isn't as severe and that your dentist was proactive!!! I hope you are recovered from your past surgery and enjoying your boys! I'll be praying for good scan results!!!
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi mom of 3...so happy to hear that things are going well. You sound like you're in good spirits and that is so important.
How are your boys doing? Is someone helping you home school them?
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Aug 2011 Posts: 11 Member | | OP Member
Joined: Aug 2011 Posts: 11 | Thanks Suzanne - The boys are being so great! Such great helpers and we started school last week, we are taking it slow (reading and math) and do the best we can...they really understand that Mom gets tired pretty easily but I am so happy to have them with me, times like this make you treasure TIME! This week we are gettng more serious with schooling and I have some online work for them now so that helps that I dont have to talk so much.
Good news, I have gone 48 hrs w/out prescription pain meds (just ibuprofen first thing in the morning and I can make it until early evening before I have to take more) So things are getting much better! Doing school with the boys sure helps keep my mind off things.
Big challenge now is my husband is traveling with work starting saturday for most of the month of October...ugh! So, huge blessing I turned a corner in regards to pain!
Hope you all have a great week!
Found questionable spot in routine dental cleaning 6/28/11
Consult w/ Oral Surgeon 7/20
Lesion removed for Biopsy 7/28/11
DX 8/3/11 MEC (Grade Low2)
upcoming resection surgery 8/31
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