| Joined: Nov 2012 Posts: 8 Member | OP Member Joined: Nov 2012 Posts: 8 | Well the other day he kept talking about biting his tongue, now I thought it was weird because: he does not complain and also being that your mouth is one of the fastest areas to heal I found it peculiar he was talking about it for days. In fact when I was cleaning on Sunday he came up to me and told me he was very troubled over it which was just so out of character. Usually he is the first person to tell everyone that things are nothing and to have faith but this time he was acting so different.
He then came down Monday morning still talking about it and how he called the nurse to see his doctor and they could not get him in until Tuesday, so finally I asked him what was up and he should me on the side of his tongue there is like an extra growth of skin that is sort of flat and twisted not red but a bit white but not like a canker sore white or ulcerated just solid. I honestly did not notice any white color until this morning but anyway it freaked me out and then I started Googling which he already did and mouth cancer, tongue cancer is so deadly with a horrible survival rate. He does not smoke, drink or chew tobacco but he did smoke like over 22 years ago. Also after biting his tongue about 2 weeks ago our 3 year old accidentally was playing below him horsing around and my husband had his jaw loose and the little guy smashed right up into his chin smashing his teeth and making my husband bite his tongue until it bled. A few times after that he was biting his tongue and tasting blood which is odd.
So anyway he got an appt today at the same time as me which was really bad because he had to rush back for Luke to pick him from preschool. He has also for the past few months been clearing his throat a lot, now yes, our little ones have had some colds and he go them too as well as having allergies so it was attributed to that but I kept asking him to get that checked out because it seemed to go on for a couple of months. So the doctor saw him and it was so rushed, but he did not think much but there is apparently a hard spot or something in the area that hurts a lot so he said that he should go to an ENT. Now, they could not get him in until Monday in that practice so we booked that appt and made one for tomorrow with another ENT. He never got to tell the doc about the clearing of the throat or anything and the doctor did not feel his glands etc. What he has looks just like the pics I am seeing and where my husband is normally cheery and have faith kind of guy, this morning he was preparing me for the worst and life alone. He thinks it is too and that is what is freaking me out really bad. It is like in one day our life has been turned upside down. | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2007 Posts: 939 | Caroline,
First, take a deep breath. Now, look at my signature. My husband was diagnosed with Stage IV cancer and he is here today, 5 years later with no evidence of disease. People with dire diagnoses do survive this disease all the time.
The fact that you have an appointment with an ENT on Monday is good news given that we see people who are put off for a month or two. I know it is scary but your ENT should suggest a biopsy if the area in his mouth indicates it. Get those results and then we will guide you to the best places for treatment. One day at a time here and know that it is not cancer until the biopsy says it is.
Hugs, Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997. DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0 TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5. TREATMENT END: 10/1/07 PEG OUT: 1/08 PORT OUT: 4/09 FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | Joined: Nov 2012 Posts: 8 Member | OP Member Joined: Nov 2012 Posts: 8 | Thanks Deb we actually go to one of the ENTs tomorrow at 1:30 pm, everything I have read on the internet had me so depressed and my normally upbeat husband was preparing me for the fact that if it indeed was the rate of reoccurrance was so great that it was basically a death sentence. I have not stopped crying everytime I think about things. | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2007 Posts: 939 | All of us who have been thru this know that feeling of being overwhelmed and reeling with all the decisions that accompany even a chance of a cancer diagnosis. Because of that, we can empathize with how you feel right now.
See what happens tomorrow, and if it looks like you are headed down this path, keep coming back to this site and read as much as you can. I think you will find that the statistics are just that and that there are plenty of people here that have successful outcomes.
Good luck tomorrow,
Deb
Last edited by debandbill; 11-20-2012 06:54 PM.
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997. DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0 TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5. TREATMENT END: 10/1/07 PEG OUT: 1/08 PORT OUT: 4/09 FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | Joined: Nov 2012 Posts: 8 Member | OP Member Joined: Nov 2012 Posts: 8 | | | | | Joined: Oct 2012 Posts: 118 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Oct 2012 Posts: 118 | Caroline,
This might not sound like a really good outsome kind of thing, but listen as I explain what my husband Reggie has been through.
In Dec. 2006 the dentist found a troubling spot in the back of Reggie's throat. 1 month later after some scopes and an MRI it was determined he had SCC of the soft palate. Stage II. After months of rad and chemo the doctors told us no more cancer. 2 years later to the month, his voice went hoarse and he could hardly breath. Scopes and MRI's later he was diagnosed again. This time it was SCC of the larynx. Total laryngectomy and 2 nodes removed in 2010. This past October, with a soar spot on his tongue for a week back to D. Scopes and another biopsy and he now has SCC of BOT stage III. Surgery is scheduled for Dec. 5th. Partial glossectomy and opharyngectomy and reconstrucvtive surgery and he will be cancer free once again.
I know it is the most devastating news you will get. But I am proof as wife that you and your husband can and will get through this and survive. It won't be an easy journey, but you must be strong and your must be informed and you must fight!!!
You will look cancer in the eye and fight back. Life is too precious. The worst part is not knowing and thousands of thoughts racing through your mind constantly. You are here and I have found it's a very informative and supporttive place to be.
Keep posting and letting us know of your husband's situation.
I just want to say that I have been talked down from the ledge lately here at this sight. I handled the first two go rounds with no problem, but this time I'm thinking the worst. Everyone is right when they say take a deep breath and quit thinking the worst until you have some sort of evidence. Treatment as advancwed tremendously in this field.
Stay in touch
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: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | "OCF Canuck" Platinum Member (300+ posts) Joined: Sep 2012 Posts: 381 | Caroline,
Everyone here would dispute the death sentence.
If it makes you feel any better, the pictures don't look bad at all.
Mine looked like the first picture except about 8x the size (the ridges ran from the tip of my tongue all along the left side, to the back where my throat is). I had the surgery, and found out today that I will not be required to do raditation.
I have been back at work since since 3 weeks after the surgery, talking and eating solid food.
If it is bad news, you will deal with it, and we will help.
Good luck tomorrow!
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: Nov 2012 Posts: 8 Member | OP Member Joined: Nov 2012 Posts: 8 | Thank you all so much I am so glad to have found this. It is just so hard not knowing, you are right about that. Then the holidays and I can't help thinking what will happen. I find myself bargaining with God and begging for him to let this be okay and just nothing. With five kids and the youngest 3 and 5 it is so hard for us, we are going all the time and I cannot even imagine doing it alone. We don't have any family around, and I am so scared. Thanks again. Tina, how long did yours take to get as big as it was? | | | | 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 | Caroline, please do yourself a favor and calm down. I know its very scary right now when you dont know whats going on. It could be nothing so preparing you for a life without having your husband is going to the extremes. Its always upsetting when there is the possibility of having something serious wrong.
With the ENT tomorrow, a diagnosis will still be unlikely. A biopsy would need to be done to determine exactly what the sore is if anything besides scar tissue. Since you wont know for at least a week or two, try to stay busy going about your usual life style. With having 5 children it should be pretty easy to stay busy. The ENT your husband is seeing should specialize in oral cancer. Some practice mainly in the field of putting tubes in childrens ears.
Hope it turns out to be nothing! 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: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2007 Posts: 790 | Hey Caroline!
Oh my gosh... Its OK. Just hang in there until you get a definative answer - that only a biopsy will tell you. I have no idea from your pictures if its just an abcess or what,
Just try and be calm. I know its terrifying - belive me I know... but you don't know what this is and until you do for sure there is not reason to go into panic mode and even then its totally and completely counterproductive to go into panic mode thinking that if he does in fact have cancer its a death sentence and its over. I am proof that it doesn't happen that way all the time.
I was diagnosed with stage 4 tongue cancer and I'm still here tell you about it.
Whatever it is - you are going to deal with it as it comes because you can't afford to fall apart. You need to be strong and tough for your husband and your family.
Hang in there and I'm thinking about you. any questions don't hesitate to ask!!!! Feel free to contact me directly!
KATE
Tongue Cancer T2 N0 M0 / Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007 Surviving!!!
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