| Joined: Nov 2013 Posts: 37 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Nov 2013 Posts: 37 | Had a visit to the oral surgeon today to find out our "action plan" and walked out with a referral to the head and neck department. I was diagnosed a week ago today with SCC and a rating of moderately well differentiated......I'm new to all of the lingo so bear with me. I have heard they will cut the tumor out of the left side of my tongue and possibly do a neck dissection to check out the nodes. Do they knock you out for this? I have heard good recovery times after the surgery so I'm looking forward to turkey dinner on Christmas.
SCC front left lateral tongue T2N0M0 After neck dissection. partial glossectomy 12/26/13. Perinueral Invasion. IMRT 60gy 30 treatments beginning 2/5/14 through 3/19/14.
| | | | Joined: Aug 2011 Posts: 269 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Aug 2011 Posts: 269 | Welcome to the forum and sorry you need to be here. I don't have the knowledge needed to answer you, however I'm sure you will see some posts soon from very knowledgable educated people. Best wishes
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: 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 | The definitely knock you out for this depending on how large the tumor is and how much tongue they remove - some require grafting - this can be a 10 to 14 hour surgery. I'm not going to get into details it makes for an exceptionally long post however please read my reply to kazy (the post just below yours - newly diagnosed) she will be having he same kind of surgery - I went into great detail explaining the cancer and surgery. If they get you in for surgery before Christmas it would be ideal - as you don't want to wait with this - recovery time if it's a large tumor is approximately 2-6 weeks depending on the extensiveness of the surgery and how you heal. Generally of you get a graft they don't let you eat for the first 8-10 days. After that it just retaining yourself to eat - it's not normally a minor surgery.
Also you want to be treated at a cancer center if possible and by a top ENT. Best of luck and do educate yourself knowledge is power.. Hugs
Last edited by Cheryld; 11-13-2013 05:39 PM.
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: 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 our site to help get you thru everything that you are facing. We will help with info and support.
I would suggest going to a comprehensive cancer center (CCC) before making a final decision on what your course of treatment will be. Its a big difference between a CCC and the average hospital in how they will handle your treatment. At a CCC, they use a team approach and get all the specialists together to discuss your individual case. Everyone is on the same page and you will get the countries top doctors who are more experienced with oral cancer. This can be very important when discussing having the kind of surgery you are looking at having. You do NOT want someone who isnt well versed with oral cancer to be your surgeon. If they dont get wide margins then you could end up with all kinds of bigger issues down the road.
As far as eating goes.... eat NOW. Bulk up, dont worry about gaining a few pounds. If you love a big turkey dinner, Thanksgiving is just around the corner, live it up!
Prior to any treatment, you should have a hearing test, a full blood count with both thyroid and testosterone levels. Go see your dentist for a good check up. If you have any teeth that arent in the best shape, have them taken care of now. If you will be getting radiation, you will need flouride trays made so it wouldnt be a bad idea to get the ball rolling on that too while you are there.
Your treatment will probably be a surgery and 6 weeks later radiation with or without chemo. You could be in for a long road before you are cancer free again. It wont be easy but you will get past this. Might be a good idea to line up some helpers for when you arent feeling the best. Also its always a good idea to take someone along with you to the doctor appointments. Too often we get some bad news and our ears stop working.
Best wishes with everything! 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: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2013 Posts: 559 Likes: 1 | Hello Fish - welcome to the family, you just joined a big one, one where all the members either have oral cancer or are caregiver to one who does. Your new brothers and sisters are very supportive, after all, we've stood in your shoes, we know what it's like.
You have a big journey ahead, one fraught with opportunities to be afraid of the present and the future. Most of that is fear of the unknown as before diagnosis you probably knew nothing about this new beast in your throat. But, we will get you past the unknown if you stick with us and read, read, read what is written here.
The other fear is worry about everything. Will the treatment be successful, will the cancer come back, will it hurt too much, for how long, will I be able to eat, to sleep, to talk. You will be told over and over on this forum that worry like that is counter-productive. It accomplishes nothing positive and lots of things negative ... it lets cancer win.
So, your "mission" is to get through this thing day by day, hour by hour if necessary. When the worry demons start knocking on your door you need to have a list of pleasant things to do on the inside of that door. Don't open the door, read the list instead, pick one, and most importantly, go do it, right then.
My list is long: go finish that Michael Crichton novel I'm working on, go work on building a new radio control model airplane, go fix one you've crashed, go watch a good movie (Youtube has lots of free movies to watch, check it out in the Friends Forum below). Go listen to some good music (also on Youtube - full concerts even, check out the two Phil Collins full concerts he did in Paris). One specifically for you, go clean out and organize your "fishing" tackle box. Go re-line that rod and reel, it probably needs it anyway. If you have the energy go wash the car, a clean car always makes me feel better. If you can't think of anything else just go outside and look at the stars at night or just enjoy the sunshine during the day. Try to locate the North star or Orion's Belt. Look for Venus at night and in the morning. A walk might be even nicer, you don't have to go far or go fast ... just go.
Long story short, the list is endless. Just don't sit there and worry about stuff.
Welcome to the family, Fish. Stick with us, we'll get you through this.
Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0. 11/13 start rads, no chemo 12/13 taste gone, dry mouth, 02/14 hair slowly returning 05/14 taste the same, dry sinuses, irrigation helps. 01/15 food taste about 60% returned, dry sinuses are worse in winter. 12/20 no more sinus problems, taste pretty good
| | | | Joined: Nov 2013 Posts: 37 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Nov 2013 Posts: 37 | New update:
Just saw the resident doc yesterday and they ran a couple of ct scans for head, neck and chest. Doc felt around the tumor area and was pleased it didn't appear to go over the other side of the tongue. I have a pet scan scheduled for Monday and I am camping with my son over the weekend. I have a great wife, son and lots of friends. I am very happy I found this site so that I can vent, communicate and hopefully one day write SURVIVOR! I have way to much to do. I scuba dive, bike and spend lots of time with my family. I guess I will give up beer for this, but after being diagnosed I have found how much I want to get through this and live.
SCC front left lateral tongue T2N0M0 After neck dissection. partial glossectomy 12/26/13. Perinueral Invasion. IMRT 60gy 30 treatments beginning 2/5/14 through 3/19/14.
| | | | Joined: May 2013 Posts: 134 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2013 Posts: 134 | Give up beer!?! Search this board and you will find threads talking about the inherent bitterness being oddly pleasant. I have one with dinner (never ever more than two) once a week or so and enjoy it way more than before Tx. I have NO desire to over indulge and get the same vibe from others who have expressed a new found taste for beer. When you have felt as bad as we have why would anyone make themselves feel like crap on purpose? I have also read posts from folks who have made dramatic changes to their diet including beer and wine and I totally respect that decision too. Hey, if you get seniority in this little club of ours you should be able to do what you please!
Dx March 2011 via FNA (49 yrs old) SCC BoT HPV+ exact strain unknown Stage IVa T3N2cM0 Cisplatin x 3, IMRT x 40 (7267 cGy) One node removed post-treatment (rad dmg) Clean PET 10/28/11 Swallow therapy | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | I think it is the bitterness. I cook with beer too, in rice, beef stews, Welsh rarebit...I make a drink called a Michalada, basically a Mexican Bloody Mary with Beer, not even 12 ounces, not that spicy, but spicy enough for me. It also helps cut the mucus too. and would opt that instead of soda. HPV is a different cause that tobacco, alcohol related, so the risk may not be the same, and would have to be excessive, like 16+ a week even if non HPV, but a magazine article, about a year ago, said even one drink raises your cancer risk, and there was a post, and discussion about this if you search. I'll take my risk with my occasional 6 ounces, but definitely I didn't drink during treatment, with certain medications. I was probably two years post treatment.
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: May 2013 Posts: 134 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2013 Posts: 134 | I have never smoked and didn't drink at all before Dx, ran 30+ miles per week, and ate as close to a perfect diet as I could get (trying to stay off statins)....and got cancer. I'm certainly not going to tempt fate with bad behavior but I'm also not going to obsess over every little thing. I think life is somewhere between the two.
Dx March 2011 via FNA (49 yrs old) SCC BoT HPV+ exact strain unknown Stage IVa T3N2cM0 Cisplatin x 3, IMRT x 40 (7267 cGy) One node removed post-treatment (rad dmg) Clean PET 10/28/11 Swallow therapy | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | [quote] I think life is somewhere between the two.[/quote]Took me a long time to figure out moderation is the key to a happy and less stressful life! Much of our lives is dictated by our DNA and there is no amount of running or eating this or that is going to overcome that. :-)
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: May 2013 Posts: 134 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2013 Posts: 134 | True that. It is also NOT the human default. Stop paying attention and you will gravitate back to whatever end of the spectrum you tend towards. I'm a type a person which I believe in my heart of hearts switched the cancer ON. I'm still alive having learned a wonderful and powerful lesson about priorities and balance and yet at the two year post mark I find myself falling into the same old habits. I always told my kids "the right thing is rarely the easy thing". If it's hard to stay centered then I guess that's where I need to be
Dx March 2011 via FNA (49 yrs old) SCC BoT HPV+ exact strain unknown Stage IVa T3N2cM0 Cisplatin x 3, IMRT x 40 (7267 cGy) One node removed post-treatment (rad dmg) Clean PET 10/28/11 Swallow therapy | | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2013 Posts: 559 Likes: 1 | It's good to read your thread again Chris. While I'm not nearly as fit as you (I used to be, but now the knees talk scream at me if I try that distance) it does remind me of pleasant days gone by.
You seem to have the formula figured out ... everything in moderation. I agree, that's the key. Even being fit doesn't guarantee nothing bad happens. But being fit, makes it so much easier to endure the treatments, and being mentally fit so much easier to fight the demons that try to enter the fray.
Your approach to life has given you extra layers of armor that protect you. You don't need a lot of pep talk, you pep yourself up. I wish it was as good for others on the forum.
Like I said before, it was good to read your thread again. Keep writing, you motivate others just by being here.
Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0. 11/13 start rads, no chemo 12/13 taste gone, dry mouth, 02/14 hair slowly returning 05/14 taste the same, dry sinuses, irrigation helps. 01/15 food taste about 60% returned, dry sinuses are worse in winter. 12/20 no more sinus problems, taste pretty good
| | | | Joined: May 2013 Posts: 134 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2013 Posts: 134 | Ha! Tony, I tend to not write about the many times I have to say "well, that didn't go the way I thought it would..". I owe SO MANY people a debt of positive energy that I can't pay them all back but I'm gonna try.
I was released by my radiation oncologist Friday. I have very strong feelings about the politics behind this that I will not discuss on this board. Suffice it to say, it was an attitude test that I failed. So, just gotta look at it from a different perspective and celebrate the end of that chapter of my life.
Dx March 2011 via FNA (49 yrs old) SCC BoT HPV+ exact strain unknown Stage IVa T3N2cM0 Cisplatin x 3, IMRT x 40 (7267 cGy) One node removed post-treatment (rad dmg) Clean PET 10/28/11 Swallow therapy | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | [quote] I'm a type a person which I believe in my heart of hearts switched the cancer ON.[/quote]OMG! The concept of moderation is rather new to me too. I'm past belief and moved the factual yet unproven that my lifestyle switched on my cancer as well. Being HPV+, not a smoker or drinker to excess, my type AAAA personality did it to me - I know. For example, over the years, I read and truly believed a common trait among many successful individuals was they just worked harder and longer; many getting by on very limited sleep, some as few as 5 hours. So, I trained my body to get by with less and less sleep and I swear that took a sever toll on my body and mind and both were unable to take the ABUSE. I played as hard as I worked so the candle was burning on both ends and one day both my mind and body just quit. Personally, I KNOW I will NEVER return to those self destructive behaviors. I'm happy just as things are right now. don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | |
Forums23 Topics18,168 Posts196,927 Members13,104 | Most Online458 Jan 16th, 2020 | | | |