Tongue Cancer: What are my treatment options?

ENT

@otem I would recommend pursuing treatment as soon as possible. I hope the links Colleen has shared will help you. Alternative treatment is not well proven and not a substitute for primary medical care. I do many complementary treatments for my head and neck cancer, but these began after initial medical and surgical treatments. You can start researching beta Glucan for an immune stimulant, and look on Amazon for a book titled The Rebel’s Apothecary by Jessica Sansouci. I found that very educational. These treatments are Not a substitute for medical care.

@otem, this must be distressing to find out that your mom has tongue cancer. It is best to talk with your mom's doctor about treatment options and financial assistance.

You can also talk with a social worker who can help. I encourage to look up "My Help Navigator" https://myhelpnavigator.auntbertha.com/ It is a social care network that connects people and programs — making it easy for people to find social services in their communities, including food, medical care, transportation, etc.

- My Help Navigator: https://myhelpnavigator.auntbertha.com/

Your local chapter of the American Cancer Society may also have financial programs to offer https://www.cancer.org/cancer/financial-insurance-matters/managing-health-insurance/programs-and-resources-to-help-with-cancer-related-expenses.html

I'm sorry that you and your mom are in the situation of having to consider delaying treatment. Do you know what stage your mom's cancer is? Was she diagnosed at a cancer center?

Hi i just found out that ny mom has tongue cancer, is it possible to delay chemotherapy for 3months since there is no money and start alternative treatment

Hi I had the surgery Friday to remove all lymph nodes levels 1 through 4 at John’s Hopkins and he said he got it all. So next is radiation I am deciding where to go for that now. Pain was really bad for the first few days. Still taking oxycodone that seems to help with the pain. There was no visible sign of ene so that is a really good thing.

@newtonguecancer, how are you doing? What did you decide?

Hi I have 3 abnormal lymph nodes and one a submandibular one under my jaw is very painful has anyone ever heard of this and what helps the pain go away. My surgical options are to have it at John’s Hopkins on Friday. Or wait to next week and have it at either Sloan Kettering or Rochester. I also have heard it is better to have the radiation given at a cancer center as they have better outcomes.

I have many post affects; extreme dry mouth, thick phlegm when I wake up in the morning, tight jaw and neck, the left side of my tongue is paralyzed, my epiglottis is barely functioning which makes eating difficult and sometimes dangerous, I get fatigued easily, I have brain fog and my conversation sometimes heads for left field, I have 24/7 migraine but receiving (4 rounds) Botox which has helped greatly, chronic ear pain from nerve damage, hearing loss, I’m cold most of the time and weak, my joints hurt and I’m just not what I was prior.
But on the bright side I’m still alive and my family is great full.

I see you 6 years out. What are the after effects of the treatment you received?

I am very confused is what I think. There should be a very low likelihood that it’s cancer but also not sure what else it could be. Swollen nodes on same side as surgery. It is my understanding the only way to know is to take them out. Talked with ENT a surgeon yesterday who feels that it is very unusual for nodes that are cancerous to be painful and so thus puzzles him. So now the drs are trying to figure out if the nodes are most likely cancerous before we do surgery and I am back at the point when I had cancer on my tongue I just want it out. My options are to go with Sloan Kettering and wait maybe a week or a local hospital that could get me in sooner. Because it’s the nodes and a more complex procedure would lean toward Sloan Kettering since the surgeon does more neck dissections. The waiting part is tough. Anyones thoughts or ideas are appreciated. I am having a hard time sleeping these days.