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Joined: Jun 2021
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Joined: Jun 2021
Posts: 1
After 14 years cancer free, it's back. I noticed the signs very early, Took 6 months for them to find it. Had CT Scans that hid it behind Implant and hardware reflections even after I warned them that we were looking right where the reflections would blind the images. I asked multiple times if there was any way to adjust the CT scan to see around from another angle. Not until a "tumor" burst and bled under my tongue and I could no longer speak did they realize that I wasn't being a hypochondriac. ENT Oncologist actually insinuated this.

Now I have a supposedly inoperable tumor in my tongue. It appears to be entirely in my tongue. but biopsy showed vascular and perineural invasion. and two slightly hot lymph nodes near the clavicular head? I suspect there is nerve involvement because of pain extending the length of the right Trigeminal Nerve.

We've talked with radiology, the chemo doctor and the surgeon. No one is being optimistic at all. They haven't staged it. The surgeon said if surgery was chosen it would be a Total Glossectomy TG and Total Laryngectomy TL. With poor Quality of Life and prognosis. 2 year max. The Radiologist said he couldn't do radiation because of the previous Max Dosage radiation I had 14 years ago. He has recommended seeing The Proton Therapy Institute at UF Health Jacksonville Fl.

I expected when we spoke to the Hematology Oncologist that she would talk up T-cell therapy or Immunology as an extra insurance to beat this. She didn't. She mentioned them as possible palliative options. She offered Cisplatin and Taxol again as concurrent treatment if we did the Proton therapy.

I want to beat this. I am in otherwise great health. In a fair amount of pain, but getting that under control.

My instinct is to have the TG and TL. Get the Cancer out of my body and then do follow up proton therapy? But the pessimistic attitude of the surgeon and teammates were disheartening.
Has anyone with recurrent cancer had a TG with or without TL? How did you do?
Has anyone here had Proton Therapy for Tongue cancer/base of tongue cancer? How did you do?
How about Immunotherapy, T-Cell or any other effective treatments?

I know this is rambling. I started a post a week ago but I was too angry and it showed. I have always been an optimist. and joked that I would be shouting from my casket as they are shoveling the dirt in that I'm getting Better! Well folks it seems they are gathering around with their shovels and I need a shovel to toss the dirt back out. I will keep my humor all the way through. But I would like some positive direction or possibilities. God Bless you all. All of us have been through Hell and back. Let's keep on truckin.


SCC Left Tongue/Tongue Base 6 times 2000-2007
Radiation 70Gy/ Cisplatin-Taxol 2007
ORN Left Jaw 2008-2010
Left Mandible BMP Graft Reconstruction 2011
Recurrent SCC Tumor Oral Tongue/Tongue Base 2021
Joined: Aug 2018
Posts: 335
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Joined: Aug 2018
Posts: 335
Likes: 1
my husband had proton therapy with his second bout of cancer. 1st one of base of tongue, the second was in the vicinity but inoperable. He did chemo for 5 days, break for 2 weeks, then more chemo. he had a backpack those days. He also had immunotherapy. He has been cancer free for a little over a year now. He had treatment at Mayo in MN. They said they had only lost 1 patient after another hospital kind of sent him home to just slowly pass away.


Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free

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