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#201723 01-25-2023 02:41 PM
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My husband had cancer under the left side of his tongue last year. He had surgery in February at Mayo Clinic and also completed his radiation there in April. His cancer was stage two and none of the 33 lymph nodes that were removed showed evidence of cancer. He did, however, have perineural invasion. He has had some ongoing issues since he finished his last round of radiation. He continues to have the expected issues with spicy foods, etc. but he keeps saying it feels like a piece of popcorn kernel in the area where the cancer was removed. He's also in tears when he brushes his teeth because of the pain in the area where the cancer was located, (this has been an ongoing issue since the surgery).

We went to his regular three month follow-up last week and the doctor didn't see anything but said the area felt firm. She ordered a CT scan on Saturday just to make sure everything was okay. The doctor called us on Monday morning and said there appears to be something asymmetrical and without borders in the area where the original cancer was located. She said it could be scar tissue but it wasn't there on his last CT/PET scan. She set up an appointment with his ENT/surgeon just to be safe but I am terrified. Has anyone had scar tissue show up on a CT scan and followed up to ensure it wasn't cancer? Do you still have pain a year out from treatment or feel like something is in the area where your cancer was removed?

Thanks for any help offered, I am trying not to Google everything and make things worse.

Last edited by CancerSurvivorSpou; 01-25-2023 02:54 PM.
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Hello Cancer Survivor Spouse,

Welcome to OCF forum and congrats on finishing surgery and radiation. Both difficult steps. I am sorry to hear of the continuing issues. Everyone responds differently and no cancer path is the same. But, here is what i can offer. I was stage 4 and had the right half of my tongue removed, rebuilt my tongue with flesh and artery from my arm, all nodes on the right side of my neck removed, cancer in one node, and follow-on 60Gy of radiation over 6 weeks about 3 years ago.

I had to use kids toothpaste for quite awhile and find flavors that didn't sting/burn. It still hurts to use regular toothpaste but I can handle it now. I really can not use anything mint or mouthwash, etc. Your husband's situation sounds worse than this. But, curious if has gotten any better. I had to learn to judge improvement in weeks and months after radiation treatment. Recovery is long and slow. I have also had lots of cavities, gum recession, crowns, and root canals as a result of radiation.

My tongue is definitely different but generally no real pain there. I do notice my speech changes and that the shape of my old and new tongue is changing slowly over time. It seems my old tongue is trying to compensate for the lack of muscle in my new one.

Glad to hear they are analyzing this further. Wish I could offer more insight maybe others here can help with some of the other issues. Stay safe and keep the faith.

Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
Nels #201726 01-26-2023 09:57 PM
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Thank you so much for your response. You are so right about seeing progression in weeks and months. I actually am seeing improvements in small steps which amazes me. He was devastated after having part of his tongue removed but even more so when he was told that radiation was the next step of his journey.

My husband made it through six weeks of radiation without a feeding tube and I never thought he could do it. He has always been skinny and a ",picky" eater but he made it! Lots of milkshakes, supplements and other foods that were easy to chew. He lost some weight in the beginning but has stabilized at this point.

He is having a hard time finding a dentist at this point in time due to COVID. His original dentist misdiagnosed his cancer as a broken tooth irritating his tongue and then TMJ when he was having ear pain and grimacing. I think his dentist feels guilty about the misdiagnosis and just doesn't want to see him now. 🙁. In any case, his teeth are now shot and we will need to find a periodontist who specializes with cancer patients. The oncologist at Mayo said he will have to go to a hyperbaric chamber if he has his teeth removed due to the limited blood supply in his jaw after radiation.

My husband's biggest fear was losing his ability to speak. The surgeon at Mayo did an amazing job, (as did everyone else at the hospital), and called me in the middle of his surgery to tell me he removed minimal tissue and my husband's speech would be minimally affected. He has a little bit of a lisp but his recovery has been awesome. He is now concerned, (me too), that they will remove his tongue if the current CT results are truly showing cancer.

His follow-up with his ENT\Surgeon is scheduled on 2/9 and I pray that it truly is scar tissue. I assume the ENT will do a biopsy but really have no idea. I don't know how he, (or anyone with oral cancer), gets through this. It's one hell of a disease and you're all amazing.

Last edited by CancerSurvivorSpou; 01-26-2023 10:21 PM.
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Great job on getting through rads without a feeding tube! Not easy. I lost about 10-15 lbs thru rads on a 155 lb 6' frame. You gotta force feed yourself things that taste like cardboard (or worse). I recall the list of what i could stomach got really short (about 15 items).

It is scary. I can recall conversations with Doctors telling me and my wife that i may not be able to speak, eat, feeding tubes for life, etc. But, good news, my life is back to full speed and has been for a couple years. It took many months though. What took over an hour to eat soon after surgery now takes about 15 min. I can recall a few of my first regular foods (like scrambled eggs or french toast) took soooo long to eat. I could barely manipulate it. I can now speak and be understood. Speech took months to clear up but i could talk to strangers fairly quickly after surgery if they were patient with me. I remember jumping on a conference call with a customer about 6 weeks after surgery and thinking let's take this tongue for a test drive! I still have a lisp and it comes and goes depending on what i eat, hydration ? not sure exactly what causes it to vary but it does.

The upshot is things kept getting better. The pace of crowns and root canals has even started to slow a little these last 6 months. Even three years out, I still slowly notice improvements in what i can taste and eat. Ketchup has been one of the harder ones for me but i can now eat it straight up on french fries (took almost 3 years).

I hope you find a good dentist. I got lucky and found a local one with some experience with oral cancer and she is quite patient and attentive. I am in there every 3 months for regular cleanings plus all the work on top of that. They know me well!

I am rambling. Prayers for no more cancer are sent your way. This cancer ride is a damn roller coaster that none of us ever knew we were in line for the rest of our lives. Hang in there.

Stay safe and keep the faith,
Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
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