| | Joined: Mar 2011 Posts: 21 Member | OP  Member
Joined: Mar 2011 Posts: 21 | a friend emailed this link im glad he did.
ive never posted to a forum of any kind have some patience please.
after an exam and biopsy i was diagnosed with tongue cancer 15Feb11. i dont know what stage.
ive seen the oncologist and radiation guy and have had a feeding tube put in. i have decided to consult with a sugeon 3Mar11. and go from there. i have so many questions and concerns i dont know where to start
48 yo male smoker beer drinker biop dx 2/15/11 stg iv scc tongue
teeth out 2/16/11
peg 2/21/11
pet 2/22/11
total glossectomy 4/11/11
18 nodes removed. 1 cancerous margins clear
| | | | | Joined: Feb 2011 Posts: 117 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Feb 2011 Posts: 117 | Rebel6211:
Sounds like you are about 2 months behind me in this journey. I had surgery to replace 1/2 my tongue on January 3rd 2011 and am doing pretty good all things considered. I have a gastro (PEG) tube and would not give it up even though I am eating soft foods, pudding, ice cream, etc. and can now drink and swallow most liquids. Let us know how your appt with the surgeon went (today ?).
This site is wonderful and full of much good info and invaluable support from some very brave people who have been thru this and much more and have blazed a trail for the rest of us to follow.
stay in touch. Where are u in wisconsin ? I am pretty close to Wisc/ILL border.... maybe an hour away.
Also -- NO QUESTION IS TOO SILLY TO ASK. these people are great and if one person doesn't know the answer, someone else will get back to you or tell you where you can go to get more info.
Ingrid K
from Illinois
(Facebook name: Ingrid Kardynalski in Huntley, IL
DX 12/6/10 of T3 SCC Tongue.
Surgery 1/3/11 was hemigloss & forearm free flap, midline mandibulectomy, Neck Disection-All nodes clear.
Ended rads 5/11/11. Taste buds back to about 80%. PEG removed 4/5/12, experimenting eating real food again. If I can do this, so can you !! Stay Strong.
| | | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | Rebel - welcome, sorry you have to be here but here is a great place if you need it. Which we all do!
Let us know what the surgeon said, and begin making a list of those questions.
Courage!
David2
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: 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 rebel - sorry you have to be here... But there are a lot of wonderful people here who can help. Read some of the postings - they will give you information about what to expect, with regards to surgery and recovery and any possible treatments that may be in your future. Inform yourself, write down any questions you have when you go see the surgeon. I know it's terrifying - but educating yourself will help. There are a lot of great people here who will answer your questions, and lend an ear.
I too was diagnosed with tongue cancer on the 20 th of December. I am 4 weeks out of surgery where they removed 1/2 of my tongue and 40 lymph nodes. The next step for me is radiation and chemo in 2 weeks. It's not an easy road, but there are people who've been through it before And they can help. Take care and good thoughts coming your way.
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: Apr 2010 Posts: 201 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Apr 2010 Posts: 201 | Hi Rebel. Welcome! Glad you found us. My sister had same cancer and is 8 months out of surgery and 4 months out of radiation.
Please make sure you are being seen at a CCC. I'm sure Christine will be along here soon to post the link to them or just search it on our site.
There you are usually treated by a team which includes a surgeon, oncologist, speech therapist, nutritionist etc.
It's going to be a rough road that many here have traveled so ask away. No question is dumb or weird to us.
CG to Sister (42). Smoker quit @ diagnosis Dx 4/20/10 SCC T2N0M0, Rside of tongue Hemigloss R neck dis, all nodes removed 6/2/10, Trach and NG in, home 6/8/10,8/18/2010 start erbitux x6, 30 IMRT end 10/11/10 with only 3x erbitux due to reaction and one week off of rads
1/10/2011 Clear PET!!!
| | | | | 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, Rebel. You have found the best place to help you with your journey. Are you being treated at a cancer center? That is something very important. Its much better to be going to have this dealt with by the top places where they are very familiar with oral cancer. All the specialists involved with your case will conference together to discuss your individual situation and come up with the best treatment plan for you. Right now its important that you eat all your favorites and then have seconds. Fill up now as yoru sense of taste will be compromised for a while. Dont worry, its temporary for most of us. A few good questions to ask your doc are.... How many cases do you treat per year? How extensive will surgery be? (Surgeons cut, remember that!) What are all the treatment options available to me? What side effects will I experience? Those are just a few starters. A very good place to start on here is the first tab titled "New Posters Read This First". Then there is another tab with a great document titled Draft Copy. This is a huge list of all kinds of pointers and posts from experienced patients and their caregivers, the link for it is below. Best of luck with everything! http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=106434#Post106434
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: 21 Member | | OP Member
Joined: Mar 2011 Posts: 21 | thanks everybody. the info ive found on the net is spotty and outdated at best. support and answers from people who have or are experiencing the same thing is a huge help.
i see the surgeon next week mar 9 my ent told me they would probably have to cut out my whole tongue. i live between green bay and marinette wi. the surgeon is at UW madison hospital. the ent knows him personally and says hes one of the best in the country.
i suspect ive had this for over a year. yeah i know i waited too long.
my sense of taste has all but disappeared already. the pain is what finally got me into the doctor.
the last of my teeth were pulled 16 feb.
my biggest concerns are will i ever be able to eat and talk at least so people can understand me? my ability to speak coherently gets worse every day.
though im not a first time cancer patient-i had testicular cancer back in 90-91 which involved surgery and radiation this is much worse.
48 yo male smoker beer drinker biop dx 2/15/11 stg iv scc tongue
teeth out 2/16/11
peg 2/21/11
pet 2/22/11
total glossectomy 4/11/11
18 nodes removed. 1 cancerous margins clear
| | | | | 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 | Rebel, Im so sorry to read of such a drastic surgery. Do yourself a huge favor and go to a cancer center for a second opinion. Do not hesitate. Call right away and tell them everything and that you need to be seen immediately. It could mean a completely different treatment plan which could potentially save some of your tongue. Here is a list of cancer centers and best hospitals. Good luck!!!! http://www.oralcancerfoundation.org/resources/cancer_centers.htmhttp://health.usnews.com/best-hospitals
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Do as Christine says Rebel. She has been thru just about everything. She also gives very good advice. Her and I are in this together it seems. We have both had a lot of things done, but I did have at least 4 opinions before I had the 1st surgery. Right now I have 2 big ones to go before long. Christine booted my rear to get me moving. LOL
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Mar 2011 Posts: 21 Member | | OP Member
Joined: Mar 2011 Posts: 21 | thanks for the list christine. the surgeon i will be seeing is at the same address as the cancer center in that city. i will be sure to ask if he is affiliated with them.
my info came from the etn. the surgeon may not think total removal is necessary. ill hear him out and go from there.
damn jim thats a lot to go through. im tired of it all already and i havent even started yet
48 yo male smoker beer drinker biop dx 2/15/11 stg iv scc tongue
teeth out 2/16/11
peg 2/21/11
pet 2/22/11
total glossectomy 4/11/11
18 nodes removed. 1 cancerous margins clear
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