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Camille Offline OP
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Hello everyone,
I was diagnosed with squamous cell cancer of the tongue on March 17, 2017. Towards the end of January I discovered a spot on my tongue, that looked like a canker sore. I thought that's what it was but after 2-3 weeks when it wasn't getting any better I made a appointment with my dentist. On Feb. 6th he looked at it and told me it looked like I had bitten my tongue because it lined up perfectly with my back molar. I had no recollection of biting it and the ulcer part was deep so I had a hard time thinking I could have done that. He sent me home and told me to continue rinsing with warm salt water and come back in 2 weeks so he could check it again. Still feeling in my gut something wasn't right I made a appointment with a different dentist. He looked at it and took a picture of it and agreed with the first dentist- simply trauma to my tongue from a bite. I told him I was stressed and concerned it was something more, but he said I didn't have any of the risk factors for oral cancer. I have never smoked a day in my life, have never used tobacco products, and don't drink. He wanted to see me back in 2 weeks or if I wanted I could see a oral surgeon to put my mind at ease.That appointment was on Feb. 24th so leaving there with still a feeling knowing something wasn't right I made a appointment with a oral surgeon. I wasn't able to get in till March 10th but I saw a excellent oral surgeon who did a biopsy. (He later told me he knew what it was the minute he saw it). The pathology report came back on March 16 and I* got the results...squamous cell carcinoma. Needless to say I was devastated, though i was prepared because I knew in my heart it had to be more because it just wasn't healing up. I am so scared that the month I wasted going to those 2 different dentists cost me valuable time.
The oral surgeon got me in the following week to see the ENT doctor he recommended and i had my first appointment with him. He examined me and confirmed what the oral surgeon said. He also did the procedure where they put the tube in your nose and down to your throat. He said everything looked normal there as far as he could see. He discussed with me 2 options...trying radiation first or surgery. My husband and I talked about it with the doctor and he said he felt confident he could get it all with surgery so that is the choice I made. In the meantime before surgery I have had blood work done, a chest x-ray, a appointment with my cardiologist and a EKG to clear me for surgery and last Friday a CT scan and a PET scan. My question for anyone who could be so kind to answer is...does this seem like a exceptionally long time to wait for surgery? He also said the surgery will take about 2 hours and I should be able to go home from the hospital that same day barring any unforseen complications. Does that sound accurate? Since being diagnosed I have been reading everything I can get my hands on and I am just overwhelmed and scared from all the varying things I keep reading. Any advice or kindness shown will be very much appreciated. Thank you so much.


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
Joined: Apr 2017
Posts: 41
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Camille...sorry about your diagnosis. I had a chronic sore throat in mid January. I got a CT scan in mid February and had surgery for a mass in my epiglottis 3/2/17. The mass was the same thing you have...squamous cell carcinoma. I been in radiation and chemo for 2 weeks. Be aggressive in asking questions and getting answers. My surgery on 3/2 was outpatient. I was in at 8 and out by 1 pm. Find a good cancer doctor and go from there. In the mean time, keep your chin up ( I know it's hard). This is a great support group! I wish you the best!

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Welcome to OCF! You are in the best place for info and support.

What bothers me about your treatment plan is the choice between surgery or rads. All physicians should be going by a flowchart to determine which path would have the best outcome for their patient. Then hearing a 2 hour window and outpatient surgery this further makes me think it does not sound right. Of course, I am not a physician and I dont have a medical degree or background but Ive been here on this site talking to hundreds, probably more like thousands of people over almost 10 years. Ive picked up quite a few things about treatment plans and how things should go. I strongly suggest going for a second opinion at a Comprehensive Cancer Center (CCC) before starting any treatment. Gather all your medical info and make an appointment. Being this is your first time having cancer, you should not have much of a change even waiting for another month. If the CCC doesnt have open appointments for a while its ok to ask about being placed on their cancellation list and calling a couple times a week to see if they can move you up. This usually works to get an earlier appointment for most patients Ive talked with. Only after getting that second opinion can you begin to make your treatment plan decisions. Its so much better for you to have faith in the medical team you select and not second guess what they tell you. When I read about your hesitation, I knew you were not comfortable with the info you had been told. Its tough enough on a patient getting diagnosed and going thru so many tests and appointments. I think you will see a big difference in how a CCC does things compared to the doctors you have already been to. Below you will find some helpful links.

Best wishes with everything!!!

List of CCCs

OCF main site --- DIAGNOSIS

OCF main site --- TREATMENT







Last edited by ChristineB; 04-17-2017 05:59 PM.

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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Welcome to the forum. I'm sorry you have to deal with oral cancer. However, all of us here have dealt with it one way or another, so we know and understand what you're going through.

Since you only had the CT scan and PET scan on Friday, I would think the treatment should depend on those results rather than on the scope. So, you may have to prepare for a possible change of plans. I agree with Christine that you should consider a second opinion at a CCC. There the doctors work as a team and there are treatment protocols that they have to follow. You will probably benefit from other services there, such as a dietitian or counseling at any point if you need it.

When my husband was diagnosed, we were told that the timeline given by the government (I'm in Canada) for oral cancer patients was to get them to start treatment in six weeks. Those weeks actually flew by. We saw the radiation oncologist, the medical oncologist, the dental oncologist (all at the same hospital), had the teeth checked, mask made, and then the first treatment started. My husband was followed by a dietitian all through to make sure he was eating enough. I really can't think where else we could get that kind of service.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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Posts: 111
Camille -

Sounds like they are going to try a resection of the tongue and verify clear borders. I would recommend going to the best available ENT with a proven history of treating oral cancers for a second opinion.

Read my Signature. The partial glossectomy I had at the beginning of my journey had clear borders. However, the cancer cells had already metastasized to my lymph nodes, but did not show during the surgical prep x-rays and scans.

Don't mess around with this. Get a second opinion

Good Luck


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

Joined: Apr 2017
Posts: 39
Camille Offline OP
Contributing Member (25+ posts)
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Thank you so much everyone for your kind words and suggestions. I feel so thankful to have found this forum to be able to talk to kind, caring people who can understand what you are going through. I live in Las Vegas and have talked to quite a few people about this ENT doctor who will do my surgery. Everyone has reassured me, including the oral surgeon who referred me to him that he is the best in this field. I have not heard the results of my scans yet, but he did say he felt surgery would be the best first option and then radiation if needed. This is all just so overwhelming to me. In 1986 when I was pregnant with my first child I was diagnosed with melanoma. After my son was born I had surgery to remove it. The cancer had not spread anywhere else so other than regular visits for many years to my oncologist and dermatologist I didn't have to have anything else.
So am wondering if I should call my prior oncologist and get in to see him before my scheduled surgery. I did have a long talk with the oral surgeon a couple of days ago and he said in his opinion he agrees with the doctor that surgery should be the first option dependent on how the scans turn out. Have not heard the results of the scans yet however. Just having such a hard time accepting this as like I said I have never smoked a day in my life and don't drink either. Just trying to stay positive and tell myself you beat melanoma 31 years ago, now you just have to beat this and once again. I appreciate everyone taking the time to respond very much!
Camille

Last edited by ChristineB; 04-18-2017 01:52 PM. Reason: removed religion from post

February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
Joined: Mar 2017
Posts: 4
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Posts: 4
Camille,

I had to read everything I could when my husband was diagnosed on Valentine's day. He had his partial glossectomy and neck dissection on 3/27. It took over 3 weeks to coordinate the surgeons's schedule and get all the necessary testing done prior to surgery. He was in the hospital for 2 days following surgery. He had the best case scenario based on everything that had been explained to us prior to surgery. After surgery, the final pathology actually downgraded his cancer to T2N0M0. He did not have to have a skin graft or free flap. He was able to speak right after surgery. He did have a nasal feeding tube for 10 days. That allowed him to heal. He was ready when they removed it and has not had difficulty swallowing or resuming his regular diet. He does have a lisp with certain words but I'm sure that will continue to improve. The pet scan appeared to have involvement in the lymph nodes. However, the final pathology all lymph nodes removed were negative. At this time, his team of physician's have changed his course of therapy and now recommended observation instead of radiation. He was back to work after taking off 2 weeks. I was prepared for the worst and so far things have been much better than expected. Best of luck to you and I hope you find this encouraging.


Wife to James 39,
Scc tongue dx 2/14/17
Partial glossectomy & neck dissection 3/27/2017
T2n0m0
Joined: Apr 2017
Posts: 39
Camille Offline OP
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Well today I am one week away from my surgery. I am trying to stay positive and stress free, but boy is it hard! I did get a second opinion and they were also in agreement with the surgery. The doctor said he would not recommend going the route of radiation yet, if surgery is able to remove it all, and the surgeon feels confident he will be able to. The results of my scans were not back at that time yet, so I have my pre-op appointment Monday May 1st and I will get the results then. My surgeon has been on vacation so have not been able to get any results yet. Am hoping and praying that the cancer has not spread anywhere else, but am really scared because every once in a while (mostly when I lay down at night) my jaw, ear, and throat on that same side will hurt. I am just so ready to have this all behind me and start on hopefully the road to recovery. I am still so upset and discouraged by the fact that I wasted the whole month of Feb. going to 2 different dentists who both thought it was nothing. Guess I can't dwell on that though, because it doesn't change the outcome. I just hope it hasn't cost me precious time in this battle. Thank you so much to everyone for your uplifting messages and responses. They truly do mean so much. And to AandJ I am praying I have a more positive experience like your dear hubby's and appreciate your encouraging words so very much.
Camille


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
Joined: Apr 2017
Posts: 39
Camille Offline OP
Contributing Member (25+ posts)
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Joined: Apr 2017
Posts: 39
Hello everyone,
Well today I come home from work to a message on my answering machine to call the insurance girl at my doctor's office. I call and she tells me my insurance has denied my surgery which is scheduled for a week from today. I am devastated and don't know what to do, and am really confused on why they would deny it. She didn't have much info to give me other than they want to speak to my doctor about what he plans to do and why he plans to do this. I just don't understand because they approved the chest x-rays, blood work, CT scan, and PET scan. Why would they then deny the surgery? I tried calling my insurance company but of course they were gone for the day. I will call first thing in the morning, but now I am really even more stressed and feel I am at my breaking point. Has anyone here had to deal with this or have any suggestions on what i should do with my surgery so close now? I know I have to get this surgery as this has gone on a while now, but know we won't have the money to pay all this outright. I am so down tonight and just feel like everything is just weighing on me so heavy. I am so tired of the constant pain when trying to eat, drink, or even talk and not being able to sleep at night, and now this. Please keep me in your prayers that this will out work out o.k. for me.
Camille

Also this doesn't make much sense either...my insurance paid the pathologist fee, and the oral surgeon's fee, but they denied the fee for the biopsy. I don't understand that at all either
How can you have a pathology report without a biopsy? Just more stress when I don't need it..


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
Joined: Apr 2017
Posts: 39
Camille Offline OP
Contributing Member (25+ posts)
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Joined: Apr 2017
Posts: 39
I had my pre op appointment on Monday and the surgeon went over all my tests and scans,. There was a suspicious area in one of my lymph nodes in my neck so now he has added a neck dissection to my surgery to remove lymph nodes. My chest x ray and my other tests were good and he said I am actually pretty healthy. On a positive note my insurance has now approved my surgery but instead of going home today. I will be staying overnight in the hospital. My surgery is at 4 this afternoon and just praying all goes well. Thank you to everyone for all your kind words and thoughts.


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
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