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After more than a year of experiencing pain on the left side of my tongue (and being told repeatedly that my non-healing ulcer would go away if I just got my teeth filed down), I finally went to an oral surgeon on July 7 and had an excisional biopsy. A week later, the pathology report confirmed that I had squamous cell carcinoma, stage 1. I should be happy, because the oral surgeon said this is "very curable." But all I can think about is going through another surgery (my appointment with the head and neck surgeon is Aug. 10; don't know when the actual procedure will be. I know I need this surgery to prevent the cancer from spreading, but I am terrified of being left with permanent deficits -- maybe never being able to speak or eat normally again. There's no one I can talk to about this. My nearest family members live 500 miles away. I feel like I'm all alone. Somehow I have to get through this ordeal and not lose my job (and insurance!), and I probably can't work if my speech is impaired. And will I someday be able to eat regular food again? How is it possible to enjoy life if you can't eat?

I'm really scared, but I'm also angry. I don't understand how this could happen. I'm a 56-year-old female who has never smoked, never used any tobacco products, never drank alcohol, never used drugs, never been exposed to HPV. I've been a vegetarian for 33 years and I walk every single day, rain or shine. I've done everything the health experts say you're supposed to do. I don't even have a family history of cancer. And yet I got this disease anyway. To be honest, I feel embarrassed and ashamed, as if I'm being punished for something I did wrong. I have so many confusing emotions, and no one to talk to!


"Try not. Do, or do not. There is no try."
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Welcome to OCF! I completely understand how you could be angry!!! Anger is part of the process we all go thru when being forced to face a potentially life threatening disease. You will find you are in a very good place with finding our group. We understand, we have been exactly where you are too. It takes someone who has walked the same path to fully understand the complexities of how this terrible disease affects us emotionally. You are no longer alone! We get you and will help you get thru whatever path your illness, treatment and recovery takes you.

There are so many things that make up why one person gets cancer while another person who on paper appears to be nearly identical doesnt. Even if your family history does not include cancer, you still could be predisposed to get cancer. We have many members who have no known cause. From what you wrote it sounds like trauma is what caused your cancer. While its pretty rare, I have seen others who have had their OC caused from trauma as well.

This is a safe place to read, post, vent. Your identity is private so you do not have to ever be ashamed of your feelings, not with us.



Christine
SCC 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 smile
Joined: Sep 2016
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Just so you know - between 5 and 7% of oral cancers are diagnosed with no history of smoking, moderate social drinkers, non-HPV. (I fall into that category as well. I was 30, spent multiple hours a week in the gym, very active, skiing, whitewater rafting, etc.) I understand. It's hard to justify why bad things happen to good people.

So, I'll throw a few things out there that have helped my deal with the diagnosis -

Don't waste your time and energy trying to figure out why this is happening to you. Cancer has a way of making the patient feel like a victim. You need to concentrate on beating this and becoming cancer free.

Relax. Once the ENT's have all of the information and are able to determine their course of treatment, (and subsequent consequences), then you will be better able to determine the impact to your quality of life. My first time through, partial glossectomy, radical neck dissection, radiation and chemo, left me with no disenable speech defect and no issues with swallowing. I was back in the gym and coaching youth sports within a few months of completing radiation. I know it's easier said than done, but at this point you just need to relax and understand that worrying about outcomes that may or may not have any validity.

Your said that you were worried about permanent defects and their potential impact on your life. Really? I would much rather continue to live a life with noticeable defects than consider the options. If not treated because of your fear of permanent defects, the cancer would eventually lead to a painful end.

Let the diagnosis and subsequent treatments take their course. What you'll be left with is a life without cancer in it

Good Luck

Last edited by bjmpittsburgh; 08-09-2017 09:04 AM.

1997 SCC Tumor on tongue - Partial Gloss
1997 Met to Lymph
Radical Neck Dissection / 2nd Partial Gloss
6 weeks chemo and radiation
Brachytherapy
2011 Stroke
2014 Recurrence SCC at Base of Tongue / Hemi-gloss
Free Flap reconstr from thigh
PEG Tube
Radiation
Permanent Issues with speech and swallowing
2018 - Bleeding throat / mouth
2019 - Bleeding throat / mouth
2019 - 3rd diag Cancer SCC Base of mouth / jawbone
2019 - Aug remove portion of jaw / right pec det / free flap closure and tongue

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Hikerdeb,

I was in your shoes in 2005, no risk factors and was diagnosed with SCC of my lateral tongue, stage 1. Over the years I meet many OC survivors and most of those that I met had no risk factors. I also did a lot of research, asked a lot of questions, trying to find out why I developed oral cancer. The best quess was irritation from my teeth (but there were no jagged edges), so I'm in the "unknown" cause group. As others have stated, don't waste your time now trying to find out how you got OC. Spend the time educated yourself about the possible treatments, medical terms, best hospitals and doctors.

Most likely they will do additional surgery on your tongue to make sure they got it all and you have clear margins. They may recommend a neck dissection also. Have you had a CT or PET scan yet? This should be done to make sure it has not spread.

One thing I learn the hard why is where you are treated and who treats you is very important. I had a great surgeon (ENT), however, my first surgery was done at a small local hospital. I was given the "all clear" after my surgery. As I found out more about my cancer, I decided to go to a larger hospital for a second opinion. I needed to have the biopsy slides from my surgery sent to this hospital, so before sending them, the pathologist looked at the slides again and found out he "misread" one of them - there was cancer at the margin in one of the specimens.

Over the next few months I went to a number of hospitals, saw many specialists, and had a few PET scans. Good news they could not detect any cancer from the scans, however, there was the uncertainty that there could still be a few cancer cells. The specialists initially recommended surgery, then radiation, or just "watchful waiting". I opted for radiation.

It wasn't until after I had radiation, that I found the OCF website and forum and learned so much more. OCF is the best source of information on oral cancer I have found. One thing that is usually done at the larger cancer centers where they treat a lot of oral cancer patients is to conduct a biopsy during the surgery to make sure they get clean margins. This is referred to as "frozen sections" - a pathologist is in the OR and will examine the tissue as it is removed. Had this been done during my first surgery, I would not have needed radiation.

Then in 2010 I had a recurrence - same area as initial cancer. So over the next 1.5 years I had 3 more surgeries. In my case, my speech and eating have been somewhat compromised but not severely. Everyone is different and it will depend on what is done during your surgery. Many OC patients have speech and swallow therapy to help minimize the effects.

If possible, go to a major cancer center and/or get a second opinion. When I had the recurrence in 2010, I finally ended up one of the best hospitals for head and neck cancer. Far superior in so many ways.

Good luck!



Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
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You are in what I call the "eye of the storm." The initial shock of hearing the "C" word and then learning the plan of treatment and surgery! It's enough to level anyone no matter how strong you are as a person. Me I wanted to scream and say really bad curse words. (Okay so I did do this in my car while driving...) it's like someone grabbing your ankles while you're trying to swim to the surface. Your kicking and pulling with all your might so you can draw in a breath of air. You feel alone in a room full of people. These are all real feelings (not that you need me to validate them) but they are YOUR feelings. This is happening to your body. You aren't being punished but it feels that way. You have lived a very healthy lifestyle and it doesn't seem fair! I get it! Cancer isn't fair it picked us but what cancer doesn't know is how strong you are! And how in time you are going to look cancer square in the eyes and say "cancer you are not going to beat me I'm gonna kick your butt and soon you will be out of my body and if you come back I'm gonna kick your butt even harder!!!" You've have the fight in you so reach down deep and find it and we will be here with you every step of the way!


SCC 4a Biopsy- under tongue 4/7/17 results Squamous Cell Carcinoma. Surgery scheduled 5/9/17. Tumor Boarf reviewing case next Wednesday 5/3/17 Appt surgery/reconstruction/involvement TBD a affected area-base of tongue on the entire right side floor of mouth from base of tongue to wall of mandible, lymph nodes in neck involved. Proceeding w/PET, surgery/ reconstruction TBD, trach, port, radiation, chemo, feeding tube. Learning from you everyday. DeboraLee
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Fate whispers to the warrior

"You cannot withstand the storm."

The warrior whispers back

"I am the storm."



SCC 4a Biopsy- under tongue 4/7/17 results Squamous Cell Carcinoma. Surgery scheduled 5/9/17. Tumor Boarf reviewing case next Wednesday 5/3/17 Appt surgery/reconstruction/involvement TBD a affected area-base of tongue on the entire right side floor of mouth from base of tongue to wall of mandible, lymph nodes in neck involved. Proceeding w/PET, surgery/ reconstruction TBD, trach, port, radiation, chemo, feeding tube. Learning from you everyday. DeboraLee
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Thank you for all of your responses to my posting. I did see the ENT/head-and-neck surgeon on Aug. 10. He has scheduled me for a partial glossectomy on Aug. 30. I will have a CT scan of my neck on Aug. 24 to look for lymph node involvement or any additional primary tumors. At this point I am still considered Stage 1, so if nothing shows up on the CT scan, surgery is the only treatment I will need at this time. I am still really nervous about the procedure, though. What is it like when you wake up after surgery and can feel that part of your tongue is missing?

I should mention that one reason this situation has been especially difficult is that my sister's husband of 40 years was diagnosed with stage 4 cancer (originating as a gastric carcinoma) in late May. He didn't even realize he was sick, yet he deteriorated so quickly that just two months later, on July 26, he died. My entire family was so shocked and devastated by this experience that most of them have avoided discussing my cancer. Even though my prognosis is much better, they just can't deal with it right now. And Eddie's death demonstrated how fickle and unpredictable this disease can be. I think if we weren't living in the shadow of his illness, I would not feel so uneasy about what is happening to me.


"Try not. Do, or do not. There is no try."
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Don't worry about waking up after surgery. Spend more energy making sure you have the right team doing the surgery. I quote Susan2992 (see above);

"One thing I learn the hard why is where you are treated and who treats you is very important. I had a great surgeon (ENT), however, my first surgery was done at a small local hospital. I was given the "all clear" after my surgery. As I found out more about my cancer, I decided to go to a larger hospital for a second opinion. I needed to have the biopsy slides from my surgery sent to this hospital, so before sending them, the pathologist looked at the slides again and found out he "misread" one of them - there was cancer at the margin in one of the specimens."

Get to a hospital that specializes and has seen lots and lots of oral cancer. Ask if they plan a radical neck dissection. If yes, understand that there will be a neck scar. If not, find out why. Studies in the UK showed that recurrence decreases if the neck dissection is done. That's my personal and non-professional point of view.


SCC stage 1 Nov. '03,
SCC stage 2 (clear mrg, no rad, no chemo) RND, Feb. '15
SCC stage 1, lower gum Mar '23

TLC356
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Dear Deb,
I'm so sorry for your loss of your brother in law. You and your family have been through a lot. Your families reluctance to openly talk about your diagnosis is understandable and they may be waiting for you to take the lead. If you want/need to talk to them let them know how you feel! They are scared too and perhaps uneasy with how to approach you.

I was also terrified before surgery the unknown causes fear. If you read through posts on this site you will notice claims that everyone's experience is different. This is absolutely true! I've met with and/or spoke to 10 different patients with almost a mirror image of my diagnosis. And EVERY single one reports a different combination of symptoms and outcomes. Before you sigh and feel frustrated I will share with you my personal experience. Please understand it may not be the same with you but I hope it will help alleviate a little fear and anxiety you are feeling right now.

My surgery was on 5/9/17 - partial glossectomy, removed floor of mouth on same side, reconstruction of flap to fill floor of mouth, skin graft from leg placed over flap drain inserted, removed Tumor from neck and 20 lymph nodes drain inserted, urinary Cath placed, feeding tube placed in stomach and chemo port inserted upper part of chest. Following surgery as I became more alert and I jotted down my thoughts during this time.

My first thought following surgery was OMG I made it through a 12 hour surgery and then I thought Thank you God for giving me a second chance. I was in the recovery room and my family kept telling me I did great. I was apprehensive about the putting my hand to my neck as I thought I had a trach. I didn't have to have a trach but some patients do to ensure they have a good airway. There was a lot of swelling in my mouth. It felt as though I had 6 hot dogs shoved in my mouth sideways so it felt bulky due to the swelling. My tongue was actually twisted up and over facing my cheek. I couldn't close my mouth due to the swelling so that was a little wierd but I knew in time the swelling would go down. I brought a mini whiteboard to communicate and that really helps. I did read somewhere to start swallowing as soon as possible but please check with your surgeon as I am not a doctor and your surgery may be different. It was hard to swallow but I wasn't in pain as they gave me meds to keep me comfortable. However, I NEVER felt wow I can feel part of my tongue is missing. But I did feel a sense of peace that the cancer was out of my mouth and neck and they said I had clear margins.

Once I arrived to my room in ICU there was a lot of scrambling with lots of beeping monitors nurses coming in and out and I was trying to get comfortable as the mattress was stiff and hot. The doctor ordered the temperature in my
room to be at 80 degrees to promote blood flow to my flap. It was so stinking hot there was sweat was rolling down my face and my hair was drenched that was miserable. 80 degrees doesn't sound hot but it's stifling! 😥

My left arm had a Velcro cast and an ace bandage from my finger tips hand all the way to my elbow. On the inside of my elbow was a tube that led to a drain It felt a little sore and only hurt a lot if I bumped It. They propped it up on a foam donut the size of a plate and wrote down on my white board to add a pillow.! This really helped. I also added a pillow under my right arm to reduce the pull on my neck.

I'm not sure when but at some point they started the tube feedings so I never felt hungry or thirsty the entire 8 days I was in the hospital.

Every hour the nurse would come in with a hand held box called a Doppler. There was a wire connected to it and a tube the size of a pencil. They touched my flap with this and you could hear the swooshing of blood flow. That's a good thing!

The skin graft on my leg was tender to touch and my husband came in to check on me and he inadvertently started patting my leg where my skin graft was and Omg it hurt! The pain of the skin graft was like if you fell down and skinned your knee in a 3 by 4 inch area.

I was able to make enough noise to get someone's attention but I wasn't able to talk or say words yet. My ICU nurse was very attentive but I noticed when I needed something and his back was to me he didn't acknowledge my primative grunts. I was like what the heck is going on. 4 hours later he tells me he is deaf. At times it was aggravating because I felt I couldn't communicate my needs or get his attention. It is a struggle and frustrating because you want to talk but you just can't. Try speaking with 6 hotdogs in your mouth words do not sound the same. Please Use the whiteboard!

I could go on and on but I think I covered your questions from your post!









SCC 4a Biopsy- under tongue 4/7/17 results Squamous Cell Carcinoma. Surgery scheduled 5/9/17. Tumor Boarf reviewing case next Wednesday 5/3/17 Appt surgery/reconstruction/involvement TBD a affected area-base of tongue on the entire right side floor of mouth from base of tongue to wall of mandible, lymph nodes in neck involved. Proceeding w/PET, surgery/ reconstruction TBD, trach, port, radiation, chemo, feeding tube. Learning from you everyday. DeboraLee
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To add to tinks post... its best to have someone there with you as much as possible. If you can have a few friends/relatives take shifts you can have someone with you all the time. Ive spent more than my share of time in the hospital and have found staff isnt always as attentive when the patient is unable to communicate. This is why if possible have people stay with you to not only your voice but also your advocate. Take a dry erase board, cell/tablet to text with. Theres an app called Speak It that will say what you type. I had a close friend who lost her ability to speak from OC, she used this all the time. It was especially helpful when she had to make phone calls. Your situation is different, your ability to speak clearly will happen as you recover. Getting a speach therapist involved will be a huge help with learning how to maneuver your newly shaped mouth.

Best wishes!!!


Christine
SCC 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 smile
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