| | Joined: Feb 2012 Posts: 3 Member | OP  Member
Joined: Feb 2012 Posts: 3 | Hi, I was diagnosed in February of this year with cancer of the tongue. I had a cold sore which I treated, it went away but another came back. I also had a hard white ridge on the edie of my tongue, but as I always bit my tongue I blamed this hard ridge on this. I eventually went to my doctor who immediately referred me to the Dental hospital. They did a biopsy on my tongue and a week later told me it was cancer. I was given two options, one do nothing and I had 6 to 12 months, two -have surgery which would remove a part of the tongue, which they would rebuild using a piece from my arm, and I would feed myself using a pet tube. I chose surgery, however when they went to operate they found the tumour to be far bigger than they anticipated and they did not proceed with the surgery as it would have meant taking most of the tongue leaving me without the ability to talk or eat for the rest of my life. I woke up in ICU knowing something was wrong,and the surgeon was there to explain things. After more discussions i opted for chemo 5 sessions, and radiotherapy - 35 sessions. This had the effect of reducing the tumour.
I eventually had surgery in November, and got our of hospital on 20th December. The theatre procedure was R hemiglossectomy, R modified radical neck dissection, L anterolateral thigh flap.
I am doing ok, unfortunately I have swelling to the right side of my face, as they removed three of the five nodes on that side of my neck. I feed overnight through the peg, and I have some drinks during the day so I get the required amount of calories each day.They didn't touch the left side. I have some swallow and I can talk, its a bit garbled, but my family can understand me.
Can anybody give me some advice as to how to get the swelling down? I found some massage techniques on the net but I have yet to try them.
My family are having Christmas dinner right now and I can't bring myself to join them, I loved food so much, and still do.
I don't know how to add my signature, all I know is I had squamous cell cancer. My surgeon is confident he got all the cancer.
Adrienne
Biopsy tongue 3/1/12 (49 yrs)
Cancer 1/2/12
PET CT 6 cm lesion 16/2/12
Lge lesion, no surgery 9/3/12
Rig 15/3/12
5 Chemo 35 Radio
PET CT good response 2/10/12
Biopsy 18/10/12
MRI Lesion reduced 15/11/12
Trache, R hemiglossectomy R mod radical neck dissection, L anterolateral thigh flap 16/11/12
| | | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | Adrienne - welcome to our family and so sorry to hear about all that you've gone through. You're in the right place for help, advice and compassion. I don't have any specific advice about swelling reduction but I'm sure someone will.
Mainly I applaud your bravery and fortitude. Very glad to read that you're getting all your calories. Keep that up! Although it might not seem so now, there will come a time in the not too distant future when you'll be able to join your family again for meals, and will enjoy them.
My thoughts are with you.
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Jan 2012 Posts: 112 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2012 Posts: 112 | Hi Adriene, one year ago I was like this! Just keep calm and this will get better! 
December, 2011 - T1N0M0 SSC Oral Tongue sugery (Dec 07, 2011). Partial glossectomy, primary closure. Selective Neck dissection, all 57 nodes free. 29 at diagnosis, no risk factors at all. No smoking, drinking and HPV negative. Can you explain? I can't.
| | | | | 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! Glad you have found the forum to help you manage your recovery and after effects. I have sent you a link with some info about how to make a signature and other tips.
Best wishes with your continual improvements.
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: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | | "OCF Canuck" Platinum Member (300+ posts)
Joined: Sep 2012 Posts: 381 | Adrienne,
I had a bilateral neck dissection and massive swelling. For the most part it is just time, but working on the neck mobility and range of motion has helped. Also, my physiotherapist told me a 3 finger massage of the scarring would help, so I have been doing that as well.
Good luck, and keep us posted!
Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
| | | | | 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 | Hi there.. Congrats on getting through it. Your situation sounds odd in comparison to normal treatment but I'm so glad it worked. I am very surprised they gave you a time frame, when it sounds like you had no metastacies.
That said lymphatic massage will help build new lymph pathways, also being active will help as well. Even if it's just walking a dog. Hugs and welcome.
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 2012 Posts: 118 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Oct 2012 Posts: 118 | Hi Adrienne,
My husband Reggie just had similar surgery on Dec. 5. 75% of his tongue and some throat and soft palate with left thigh flap. He is 21 days post op and still very very swollen. His doctor said that the neck swelling would just take time. About 3 months. The flap which has a muscle attached has to atrophy some before the swelling goes down. His tongue is still 3 times the size it should be. But the new tongue is pinking up and looking really good. Hope that helps.
Last edited by Bette; 12-26-2012 09:56 AM.
Bette/CG to husband Reggie 66
dx 1: SCC Soft Palate (12/06)
tx: chemo and rad
dx 2: SCC 6 cm tum rt. vocal chord (12/09)
tx: total laryngectomy with stoma, 2 nodes
dx 3: SCC 4 cm tum BOT (10/16/12)
Tx: partial gloss w/ mod deck dis 4 nodes incl. part. pharyngectomy
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | Welcome, but sorry for your treatments, and surgery. Other than it taking time, maybe ask your doctor about a therapist that specializes in lymph drainage therapy, LDT, and doing light exercise like walking, swinging arms to get the Lymph fluid flowing, and when that can be done after surgery. The manual Lymph drainage has to be done a certain way...direction, pressure, and each area in the face, neck has a different pathway to do, so it's best to see a professional. Some find Lymphdemia relief with acupuncture also, but again, see when, and if that can be done. Good luck.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Feb 2012 Posts: 3 Member | | OP Member
Joined: Feb 2012 Posts: 3 | Hi
Thank you for your advice, I saw my consultant yesterday and he gave me the name of a therapist who specializes in lympheodema so I emailed her and am waiting for a reply. I have been doing light exercise, but now I will concentrate on exercises which focus on the arms.
Kindest regards
Adriene
Biopsy tongue 3/1/12 (49 yrs)
Cancer 1/2/12
PET CT 6 cm lesion 16/2/12
Lge lesion, no surgery 9/3/12
Rig 15/3/12
5 Chemo 35 Radio
PET CT good response 2/10/12
Biopsy 18/10/12
MRI Lesion reduced 15/11/12
Trache, R hemiglossectomy R mod radical neck dissection, L anterolateral thigh flap 16/11/12
| | | | | Joined: Oct 2011 Posts: 225 "OCF Down Under" Gold Member (200+ posts) | | "OCF Down Under" Gold Member (200+ posts)
Joined: Oct 2011 Posts: 225 | Hi Adriene,
It's nice to meet you. I don't have any advice on lympheodema, but I hope to be able to offer some help to you at some stage. Hang in there, Linda
Last edited by samkl; 12-29-2012 06:32 AM. Reason: Spolling (of course)
Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
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