| | Joined: May 2014 Posts: 8 Member | OP  Member
Joined: May 2014 Posts: 8 | I am two weeks out after surgery. Had part of my tongue taken and reconstructed. Have healed rather rapidly considering. My trach is out now and swallowing well. Still have some swelling but seems to be coming down - not as fast as I would like but going the right direction. I have a peg which will be removed next week. All of my lymph glands were clear except one which they say is encapsulated and they may want to use radiation on it. My question is - is there an alternative to radiation? | | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Welcome to OCF! You have come to the best place to get info and support for oral cancer.
The only scientifically proven ways to eliminate oral cancer are either surgery and radiation with or without chemo. That's it, nothing else will work. Radiation is no walk in the park for this type of cancer but it is doable. We will help you get thru whatever you are facing.
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: 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 | Hi Blair, sounds like all is going rather well.
Listen to Christine. Oral cancer is an aggressive beast. Hit it with the works first time and that means radiation when your team recommends it. Especially as you already have spread to a Lymph node - which makes it a stage 4.
You do not want to have any regrets at a later time. Please do not consider any non medical alternative treatments. This is your life you are talking about.
Radiation is doable and many here will help you through.
One other thing - I would keep the PEG in situ if you are going to have radiation treatment.
Tammy
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: Apr 2014 Posts: 236 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Apr 2014 Posts: 236 | Hi Blair
Its best to leave the peg in if you are going to have Radiation Treatments. My mom is in her second week after completing her radiation and the peg is being used everyday.
Sweetpe
Caregiver
RE:My Mother
Age 70
Non Smoker
SCC 3/4/2014 Left rear jaw
Mandiblctmy 3/25/2014
35RAD Completed on 06/03/2014
MRI 9/3/2014
25mm lobulated recurrence left mandible/floor of mouth carcinoma
9/23/14 Salvage Surgery
MET(s)
9/23/14 Salvage Surgery Not Successful
Chemo Recommended
1st Round of Cisplatin Chemo Started 10/20/14
Cisplatin stopped 11/20/14. Side affects to bad.
Chemo started again 1/22/15 Carbo/Docetaxel
Passed Away April 22,2015
| | | | | 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'm going to third all that has been said... do rads and chemo if it's recommended (and it should)
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: Mar 2014 Posts: 286 "OCF Down Under" Gold Member (200+ posts) | | "OCF Down Under" Gold Member (200+ posts)
Joined: Mar 2014 Posts: 286 | Welcome and ditto to what the others have said. Listen to the doctors first, and use the internet (including us) to help you understand the torrent of information that you are confronted with. A lot of the concepts are pretty foreign until you have to face them first hand. Best wishes for your treatment.
Cheers, Dave (OzMojo) 19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil. 31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014) 11August2014 PET/CT clear. 17July2019 5 years NED.
| | | | | Joined: Apr 2014 Posts: 13 Member | | Member
Joined: Apr 2014 Posts: 13 | Hi, Like you I have had surgery, base of tongue 1 cm mass and lymph nodes removed. Only 1 positive, but it was large and they are recommending less intense rads, only 1 side of neck, no chemo. I am 3 weeks out of surgery will probably start rads in a couple of weeks. I don't want to have recurrence, so I guess this is what I have to do.
SCC stage 3, BOT, 1 Node, DX 4/10/14
CT4/10/14
PET4/11/14-clear (except for 1 node)
FNA4/14/14,4/24/14
T1N2M0
TORS 5/23/14
HPV+
30 rads completed 8/22/14
NED 11/6/14 😀
| | | | | Joined: Jun 2014 Posts: 56 "OCF across the pond" Supporting Member (50+ posts) | | "OCF across the pond" Supporting Member (50+ posts)
Joined: Jun 2014 Posts: 56 | Hiyah mate. I had the same as you. And it was found in two of my lymph nodes.
I had 30 sessions of radiotherapy.
Yes, radiotherapy IS awful - but it could SAVE YOUR LIFE.
I had surgery last December, radio this February March. I attended my graduation ceremony today BSc(Hons) Nursing Practice, and I am going back to work this Wednesday. You can and you will get through it. I did.
I am VERY glad I went through, yes even fought through the radiotherapy, because it is our LIVES we are fighting for.
I would not like to be sitting here now thinking "I wish I'd had it... what if?" - because you'll never manage to shake those thoughts. Cancer haunts your mind as it is....
You will need that PEG, because your mouth will be sore. I had my PEG for 16 weeks (6 weeks during radio and 10 weeks after).
Get ready for a fight, my friend, but it's a brave and important fight that you WILL WIN - you will beat radiotherapy and come out the other side with an improved chance of survival!
Sent with my very best hugs and compassion to you, and all of us with this dreadful illness.
Mar 99 white patch tongue
Dec 11 white patch changed shape. biopsy neg
Sep 13 white patch ulcerated. Biopsy
Nov 13 diag Tongue SCC T2N2BM0 poorly Differ.
Dec 13 Hemigloss. neck dissect.Trach.Caldwell Luc (suspect cysts inside face, neg), teeth out. forearm flap, abdo graft
Feb 14 PEG tube
Feb/Mar 14. 30 x radio 60gy Grade 3 Mucositis, burns, hair loss, very ill. Nerve damage ear neck shoulder
Jun 14 *now* PEG out. Have lost 98 lbs in 1 yr. Anorexia. Dysphagia, liquids only. Dysphasia. Fatigue.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | If they recommend it, do it.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: May 2014 Posts: 8 Member | | OP Member
Joined: May 2014 Posts: 8 | I am looking at Proton radiation at MDanderson which is less evasive. Has anyone had this? | | |
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