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#196167 04-16-2018 04:17 PM
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Hi, my husband Tim went to dentist just this past Friday to have a weird place on his tongue checked out. I got the shock of my life when he called to say the dentist thinks it is Squamous Cell Carcinoma and was cutting it out on the spot. Dentist removed a 1.25 centimeter tumor and sent off for biopsy. While he stressed we have to wait for biopsy to be sure, he said with my husband’s history of tobacco use and the presentation of it, he feels pretty certain it is cancerous. The next day, Saturday, Tim was in terrible pain and throat felt very tight. Dentist met him at the office and pressed on his throat. Said “I think we are dealing with more than just the tongue” and instructed us to go straight to ER. He had us terrified that the cancer was probably down my husband’s throat and who knows where else. After much waiting and worrying we finally got some good news. They said his CT scan of neck and lymph nodes looked good. But my husband’s pain and difficulty swallowing has only increased since then. Granted he just had a chunk of his tongue cut out 3 days ago, but I am really questioning his dentist at this point. I should probably mention that Tim had this place for 3 months before having it looked at. It did not hurt and he simply kept forgetting about it. When I googled it, I kept running into articles that made it sound like even a month delay in treatment could be fatal. I guess I am hoping for some advice and reassurance from experienced oral cancer patients and caregivers. Also, my husband says there is a foul tasting drainage in his mouth in addition to new areas of discoloration and white spots that have just popped up in the last few days since the tumor was extracted. Anyone else have that happen?

Last edited by Timswife; 04-16-2018 04:17 PM.

MRSB
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Welcome to OCF! Im very sorry you may have a need for our site! We will help you as much as possible with info and support.

Take a deep breath and do your very best to slow down. Take this one step at a time. Avoid Dr Google, it is making this harder by promoting the "what if" thinking. As of today, your husband has not been diagnosed with cancer. He had a biopsy which will take a few days to come back. Waiting for results can seem like its taking forever. I hope this will not be cancerous, but if it would be you're already in the right place for guidance.

I strongly recommend finding your husband an ENT and an oncologist instead of allowing the dentist to continue treating him. Not all dentists will do biopsies. Most dentists only see the teeth and ignore everything else. Its good your husbands dentist is observant and did the biopsy but he really should be seeing someone who specializes in cancer. Usually an ENT or oral surgeon will be who does the biopsy. Look for an ENT who specializes in treating oral cancer (OC) patients. They should be the most experienced in seeing people with mouth issues like your husband and have the most experience in that type of thing. I'd recommend seeking out a comprehensive cancer center (CCC) if the biopsy results show cancer. A team based approach is used at CCCs so all the specialists are on the same page. They get together for whats called a tumor board meeting, patients and caregivers are welcome to attend (and should!).

Heres a link to read more about the diagnosis process (click on the second bullet point for info about diagnosis). Its from our main OCF site where there are page after page of correct, up to date medical info which is a great resource to learn about this disease (if your husband has it).

Main OCF Site, Understanding section

If your husband is still smoking, he may want to use this event as motivation to what helps him to quit. Even if he is diagnosed with OC and figures the damage is already done... he needs to quit so the poisons in tobacco do not make it worse. I know its not easy to quit, I used to smoke and quit. This is something he must make up his mind that he wants to do and then do it. By quitting, it will give his mouth a chance to heal faster. Hang in there and try your best to stay busy to help ease the stress of waiting.

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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Thank you so much Christine! Yes, my husband is stopping cigarettes but is having a really hard time with it since he is so stressed out. I am sure you understand since you are also a former smoker. He is using nicotine patches right now to try to calm the cravings. We do have an appt with an ENT scheduled this Weds. The ER set it up for us. I am not sure if he specializes in cancer treatment or not. But I figure we can start with him then move on to another doctor if needed. Thank you for replying. It helps a little to know someone read it and took the time to reply.


MRSB
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Christine's advice about a cancer center is right on the money. Where are you in VA? I see several places on a gvt. website in VA, and I'm sure that if you are near DC there will be more there.
Massey Cancer Center, Virginia Commonwealth University, Richmond, Virginia, Cancer Center Gordon D. Ginder, M.D. Director, Richmond, New Patients: (804) 828-5116

University of Virginia Cancer Center, Charlottesville, Virginia, Cancer Center Thomas P. Loughran Jr., M.D. Main: (434) 924-3627 Toll Free: 1-800-223-9173

It is important to find doctors specializing in oral cancer since it hits such a small percent of people. Both tobacco and alcohol use are big problems (unless the cancer is HPV related).

Just because he is under attack does not mean the battle is lost, it only means that the battle has begun.


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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Thank you for your reply. For some reason I just now saw it. We are only 45 minutes away from UVA. We got the diagnosis of stage 3 scc today. I plan to call UVA tomorrow for appt


MRSB
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Timswife,

Welcome to OCF and sorry you had a reason to join our group.

If you are in VA, I would highly recommend checking out Johns Hopkins in Baltimore, MD. Hopkins is one of the best head and neck cancer centers in the USA. I was treated locally (PA) initially, but when I had a recurrence after already having 2 surgeries and radiation, I went to Hopkins for another opinion (3rd opinion after recurrence). Best decision I made! You can read more about my “OC adventures” by reading posts I made in 2010.

Wishing you and your husband the best!


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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Thank you Susan!


MRSB

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