Diagnosed with tongue cancer (2nd cancer): Worried about treatment

Hey I thank you for the information, so are you able to talk? I was told I won’t be able to swallow, talk, and would need a stomach tube, my feeling on this is what’s left, taking my voice away, my ability to eat on my own, I’m just not ready to live like that, but I say to you, you are stronger than I am, I have been through the treatments and they were intense

I can talk and swallow though not as well as I would like and definitely not as before cancer. I am lucky there, too. You have some very difficult decisions to make. Prior to my surgery I found some free speaking software on line and bought a wireless keyboard for my cheap Amazon tablet. I was ready to use that for my voice. Now I understand there are ways to record your own voice....probably AI, and use that with the keyboard so it uses your own voice. I will say this too, the surgery and recovery went great and,my swallowing and speech were pretty good. It was the radiation that caused much of my swallowing and speech problems with the lymphedema and fibrosis. I will keep you in my thoughts and prayers.

I had tongue back in 2016, age 52. Had surgery to remove 1/5 of my tongue. During surgery they found the cancer was in my lymph nodes so I received both RT and chemo. It was rough, especially chemo as they use heavy metals in head and neck cancer patience's. Have been cancer free since. Fast forward to 2023 developed Osteoradionecrosis of the lower jaw due to the RT. Had the Free flap fibular reconstruction surgery last year, had to do the inner flap twice due to infection, so did another skin graft from my radial forearm. After attempts t get implants done I learned this week that only have the fibular bone survived and is dead do to lack of blood flow so I am facing having to repeat the procedure, age 60. I tell you all of this as I am not sure if my cancer returned somewhere in my lower oral cavity would I be able to undergo RT again either. I have a wooden neck now and any additional RT treatment I feel would not be good for my overall health. Surgery and chemo may be your only option. As to your family, i will tell you I would never have made it with our mine. they would always remind me "your not fighting this alone". Prayers for you an d yours.

I have tongue cancer. After chemo it shrunk considerably. But I also had quite a bit of radiation that I wish I wouldn't have had. Part of tongue is gone. So now I have to do a lot of exercises and speech therapy to get tongue muscles moving again. And the extra saliva and mucus in my mouth is very embarrassing. What is the wand to help on EBay? I want to eat again normally. I never lost my sense of smell or taste. Chemo and ketruda destroying the cancer cells and has not spread anywhere else. Drs said the only way to tell if there is cancer there yet is to do biopsy. I am hoping for it to be gone. Please get some treatment for your tongue cancer. It can be gone with infusions. I am very thankful to my oncologist who came up with my treatment plan and it has worked. So please check around for help. I am sure your family would want you to fight this. I go to Rochester Mayo in Minnesota. They have been a tremendous help. God Bless you and all of us cancer people who keep fighting the fight!

rosie100, here is a description of one type of red-light wand on eBay:
VEVOR Red Light Therapy Device Red & Near Infrared Therapy Wand & 3 Wavelengths.
I do believe it helped me during radiation treatments and after.
Best Wishes to you.

Would you be willing to start a whole new thread on the red light therapy? I never heard of it and I sounds like something I would like to try. I bet others would be interested, too.

I was told with medication it will shrink

Hello, sandy8043.

Thank-you for the response. I feel totally under-qualified to give any certified guidance on this topic. Yet, I can share that while undergoing radiation treatments, I would slowly wave the oversized-pen-type, red-light therapy (RLT) wand inside my mouth and throat area for around ten minutes. The wand I used is a "Neutrogena Red-Light Wand." According to Ai: "It emits low-level red and blue light to treat acne by killing bacteria and reducing inflammation. However, it's important to note that it's designed for spot treatment of acne and may not be as effective as professional RLT devices for other conditions like pain management or wound healing."

Also, if my energy permitted, I would sometimes do this again in the evening, but this time focusing on the Adams-apple outer area of my neck and lymph-nodes under the earlobes. Here are links to two different scientific articles concerning the subject of RLT:
https://pmc.ncbi.nlm.nih.gov/articles/PMC3423866/
https://www.cancer.gov/about-cancer/treatment/types/photoimmunotherapy-video
It is impossible to say with certainty if this process helped me. The fact that I am able to eat, drink and talk normally, may or may not be attributed to the use of RLT. When I first found out I had a tumor, like most people I began researching articles on cancer treatments and outcomes. I found a hospital hundreds of miles from home that offered "proton radiation," but after driving there and going through the paperwork, it was found my type of cancer was not suitable for proton.

Desperate to avoid the radiation treatments, I tried many so-called "holistic" methods to rid my body of the tumor. The one that sticks (pun intended) in my mind, was the "baking soda and molasses" method. The thought of drinking that concoction still makes me shudder! Of course, none of it worked, so I relented and went ahead with the radiation. The research led me to RLT. Although it did not claim to cure cancer, it has been proven to have amazing results at skin healing.

Some people have undergone the same radiation treatment in the same general throat area, to later find parts of their throat mechanisms have fused together. Would RLT have reduced this risk? I cannot say, yet it is a highly disturbing mystery why some people having undergone radiation, end up with such devastating outcomes in terms of throat mechanism functionality. If RLT is proven to be safe when used as directed, what can it hurt to try it? Here is what Ai had to say about RLT:

"RLT involves the use of low-level red and near-infrared light to stimulate cellular energy production and promote healing.
Some studies suggest that red light therapy may help reduce inflammation, improve blood flow, and accelerate wound healing.
While RLT is generally considered safe, it's important to use devices that are approved by regulatory authorities and follow the manufacturer's instructions.
It's crucial to emphasize that RLT should not be used as a substitute for conventional cancer treatments. It should be used in conjunction with a comprehensive treatment plan under the guidance of a qualified healthcare professional.
Skin Health: Several studies have shown that RLT may improve skin conditions like acne, wrinkles, and sun damage.
Wound Healing: Some research suggests that RLT can accelerate wound healing by increasing blood flow and cellular energy production.
Pain Management: Studies have indicated that RLT may help alleviate pain associated with conditions like arthritis and muscle soreness.
Hair Growth: While there is limited evidence, some studies suggest that RLT may promote hair growth by stimulating hair follicles.
It's important to note that the effectiveness of RLT can vary depending on the individual and the specific condition being treated. Additionally, the quality of the device and the duration of treatment can also impact the results."

Here are some resources where you can find more information about RLT:

National Institutes of Health (NIH): The NIH website provides access to scientific studies and information on a variety of health topics, including RLT.

PubMed: PubMed is a database of scientific and medical literature, including research on RLT.

ClinicalTrials.gov: This website provides information on clinical trials, including those evaluating the effectiveness of RLT for various conditions.

It's always best to consult with a healthcare professional before starting any new treatment, including RLT. They can help you determine if it's right for you and provide guidance on the appropriate dosage and duration of treatment.

Please let me know if you find more information on RLT, as there is ongoing research and articles. We all need to learn from each other! Best Wishes to You.

@sandy8043, I should have added that my vocal cords are paralyzed, and they aren't snapping out of it any time soon. So, I will have a tracheotomy tube for the rest of my life...however long that may be. In other words, the red-light therapy obviously did not prevent the adverse effects of radiation in that respect! After reading the stories of @ld1262 and @ mytime62, and you of course, I am grateful we are all alive. My "hat" goes off to each of you!